Happy 4th of July everyone. Sorry it's been so long since my last post. We've had a very busy summer schedule,I'm sure you can all relate.
Momma called the doctor and the doctor said.....
So our last visit to Johns Hopkins was good, bad & unexpected. The good news is that the Dr's were very pleased with Ben's annual EEG. It was a 3 hr video EEG and he only had one very small seizure on it. His baseline was even normal. So even though he has been having a seizure a week, Ben doesn't seem to have any sub-clinical seizures, or "white noise". Once again the Dr's said that they feel strongly that Ben should eventually become seizure free. Hopefully by this time next year. Ben con't to have slow but steady developmental progress. He's been going to summer school as well as music classes this summer. He really enjoys the music class and has had quite a few breakthrough moments (he actually "played" the piano and sang "Twinkle twinkle" little star from start to finish. He never missed any of the words). It was a really nice moment.
The bad news is that the Drs were unwilling to let me titrate Ben's meds in order to get seizure control. (I asked them to give me the upper limits on his meds as well as a titration schedule and I'll increase as needed and let them know how it's going.) Even though I'm a critical care nurse and titrate cardiac and other life support meds on the weekends. Dr R said no. He said "I'm a little old fashioned and want to keep a close eye on things" I said ok, but if you're going to micro-manage his care, I expect better response and availability via phone & email. He promised me again that he would improve. We'll see. The other bad news is that they won't see us any more frequently than once every six months. So, even though Ben's still having seizures, his lipid panel is 3x the upper limit of normal and he's been having white stools,they feel extra visits aren't necessary. I wonder what you need to do to warrant extra visits?
The unexpected. The Drs feel that Ben's white stools are happening b/c he occasionally is overwhelmed by the amount of saturated fat in the diet and can't break it down. This causes him to lose fat in the stool (thus, they're white) and drop his ketones. This is a theory I had from the beginning but the JHH Drs didn't give it credence until Ben's pediatrician suggested it to them. And I'm the one who gave the pediatrician the idea. I guess MD's speak a different language to each other!
Anyway, the Drs said they have never seen this happen with one of their kids. They are considering putting Ben on MCT (Medium Chain Triglyceride)oil. This oil replaces the fat (e.g. butter & cream) in the diet. They have never done it before at the clinic but it is the primary form of the diet in Canada & Europe. If they do switch Ben to the MCT oil, Ben would not only lose some of his food but he would lose most of his favorites, eggnog, egg custard, waffles, ice cream, butter lollipops. It will take JHH a couple of weeks to research the changes in the diet and come up with an alternate menu for Ben. In the meantime, Ted has created new menus and changed as many of the old ones as possible in order to increase the amt of unsaturated fat in the diet instead of saturated.(we're hoping that if the white stools stop, we won't have to switch to MCT oil) Basically it means olive oil, mayo & nuts instead of butter & cream. We've come up with some yummy meals. Chicken Waldorf salad, bacon & applesauce with maple flavoring, eggplant parmesan & avocado & bacon.
So for the keto cooking gang, we won't be having another cooking session until the Dr's decide if we need to switch his diet. It may be we'll all get together and just do snacks. They haven't changed and Ben goes through them faster than any other food.
Here comes the bride.....
The first weekend in June we went to Virgina for the wedding of Ted's cousin Ashley. We had a great weekend. It was really nice to see all of Ted's family and spend time together. Grace was in the wedding and she looked beautiful.
Ashley had asked if both Ben & Grace could be in the wedding but we decided against having Ben participate. I just didn't want anything unexpected to happen and disrupt Ashely's big day. Gracie did a great job during the rehearsal. She waked down the aisle slowly and smiling the whole way. She must have done it 6-7 times. The next day, when the big moment came, she stood at the top of the aisle, took one look at her dad and crumbled into a big pile of white dress. She looked like a big s'more minus the chocolate! She never cried. A family friend quickly walked up,took her hand and Gracie stood up and walked down the aisle without a complaint. She was adorable. It was really nice to spend the weekend focusing on Grace and a little less on Ben. It reinforced how much time we spend with Ben and how we need to try to balance our time & attention between the two of them.
A Pirate's life for me.......
The week after the wedding. We celebrated Ben's 5th birthday. Ben has been a big fan of the movie Pirate's of the Caribbean (and good mom that I am, I actually let him watch it, skeleton's & wooden eyeballs & all!)So we went with a pirate theme for the birthday party. It was a big hit and Ben had a great time. I don't know if I've ever seen a pirate with a Dora the explorer swim vest! Ben was a riot!
This was Ben's first birthday since starting the diet so the cake was an issue. My friend Dennis came up with a great idea. He made a "cake" by decorating an upside down box,he did a fantastic job and it looked great! We then filled the box with wrapped birthday presents. So we brought the "cake" out and sang happy birthday. Ben blew out the candles we lifted the box and there were all the presents. The look on Ben's face was priceless. (You can see it in the pics). We then handed the presents out to all the kids so they could help Ben unwrap them. It was a big hit. Everyone had a lot of fun and I don't think Ben even missed eating real birthday cake. I saved the "cake" for next year. We'll definitely do it again, just redecorate for next years theme.
Happy 4th of July......
We are currently at my mom & dad's place at the lake. We drove through the night, which wasn't that bad, so we could celebrate the 4th at the lake & see the fireworks. The only screw up was that in our hurry to get out the door Thursday evening we left the bag with Ben's seizure meds at home! (It was a case of I thought Ted had it, he thought I had it, yikes!) We had his diastat but nothing else, and of course, it being a holiday, I was in a real panic. Luckily, it all worked out. We were able to find a local pharmacy that was not only open but they had both Zonegran & Depakote in stock. So the on call Dr @ JHH called in prescriptions. My mom & dad were also able to get prescriptions from my Uncle, get them filled in Uniontown and bring them over to us. Finally, Carrie, who is staying at our house, ran out and Fed Ex'd the whole bag we left behind. We should get it Monday. Everyone was awesome and really helped us out. We never even missed a dose! Lesson learned: We got a bright red backpack, all the meds will go in the backpack and we will always make sure it's in the car before we go.
We'll spend a few days at the lake and then travel to State College for the rest of our vacation to stay with my sister Ann and check out the Penn State Arts festival. Always a great time. It'll be a really nice vacation.
We hope everyone has a wonderful 4th of July and that you have a terrific summer. Filled with happy days and many joyous celebrations, both big and small.
all our love,
Meg & Ted McDaniel
e enjte, 3 korrik 2008
e premte, 16 maj 2008
So, do you want the good news or the bad news.....
Abuse is never ok
Unfortunately, since I last posted,it's mostly been more of the same. Ben has continued to seize once a week. He's still having intermittent white/clay colored stools. Now his ketones are also fluctuating for no known reason just prior to the white stools. He also has had very high LDL (250-320), that's the bad cholesterol on your lipid test. Most distressing is that Johns Hopkins continues to be slow to respond if they respond at all.
It all came to a head two weeks ago. Ben had another seizure, another loss of ketones and another abnormal stool (all within a 3 day period) and no response from the Dr's to my repeated emails & phone calls. I had decided in March to try to get an appt in the clinic once a month for the summer months. I figured if they wouldn't deal with me from a distance, they'd deal with me face to face. If I didn't need the appt, I'd cancel them. I was talking to the Dr's secretary and he put us in for May, July & August. The only one he couldn't do was June since it was already booked. He told me to call the clinic manager and ask to be put in if someone canceled. Well,as I said, it was already a bad day. I called the clinic and was informed that Ben was not allowed to be seen more often than once every six months! Can you believe it!
So, never mind that he was having all these issues and that he was still seizing! They said they had limited resources and they needed to make room for the admission patients. See a problem here? I guess the priority is to get the kids enrolled, not to manage them once they're on the diet and having problems.
Well, as you can imagine, I FLIPPED OUT!. I was screaming and crying at the same time. I totally lost it on the lady. I finally calmed down and then she made the mistake of saying "I'll let the team know that you want to discontinue the diet".
So, then I flipped out all over again. I started yelling at her that I was NOT quitting the diet and I was NOT giving up on my son, but I was giving up on Johns Hopkins and that I would take Ben somewhere else.
One hour later the social worker called. This call didn't go much better. This is a women I haven't see except to pass in the hallway since last July. She called me up and started out by saying, "You don't talk Meg, let me talk". Not "I know you're upset, tell me what's going on" etc. She then read to me from the January clinic note, stating that it said how well Ben was doing! And she reprimanded me for being emotional and overwrought. First of all, the clinic note was talking about "how good Ben was doing" on the higher calorie count in regards to hunger. It had nothing to do with seizures. Also regardless of what it said, the note was FOUR MONTHS OLD! This fact seemed to escape the social worker. She then proceeded to tell me that the clinic had in fact been in contact with me. Never mind that she had never seen any of the numerous emails and that the only phone conversation I had was a voice mail message 3 weeks ago. When she finally did allow me to speak, I explained what had been happening since Jan. Every time I had a question she would say, "well I can't really address that, you'll have to speak to the physicians".... NO SHIT! Why do you think I keep calling! She finally added salt to the wound by saying, "well you know Meg, you may just have to accept that the diet isn't going to work for Ben".
What a blow. This, about a kid who had been seizure free for 3 months and when we were told repeatedly that he could be cured. I could accept what she said if I felt that the team had really tried to change his meds and find the right combo of med & diet (Like they said they would in Jan) But I truly feel that once he showed that he needed both diet and meds, they didn't want the hassle of dealing with the meds. Amazingly, in all my anger and all my tears the social worker never once said anything conciliatory or consoling. There's compassion for you.
Later on that night Ben's Dr did call me. We discussed what was happening including the continued poor response to my calls & emails. At one point he said "Yes, I got your email and I felt so bad, you sounded so down" (I was pleading with him for some guidance and assurance related to the ketones & white stool). I said to him "Yes I was depressed and I sent you that email over 3 weeks ago!"
I feel like I'm in an abusive marriage. They beat me up and then act contrite and promise not to do it again, only to repeat the pattern over and over. And I don't know how to break the cycle and I'm literally afraid to leave Johns Hopkins. I'm afraid on 2 levels. 1) We've been at JHH for a year now. If we try to go to another clinic they may say," if Hopkins couldn't find the answer for you, what can we do" and 2) You've already been on the diet a year without seizure control chances are you won't get control and it's dangerous to keep him on indefinitely.
I'm just so upset that I feel like we wasted so much time. And since Ben was seizure free, every seizure he's had since November, shouldn't have happened.
The plan is this. We go to JHH tomorrow. I'm going try to get them to understand how they are dropping the ball and impress on them how much we need their help. That they are probably Ben's last chance. I'm also going to ask them to let me titrate his meds and let them know how he's doing and if I need another med. I will also ask to please come back in July, if Ben isn't any better. Depending on their response, I'm calling the keto diet center in Charlotte, NC. I need to change before I waste anymore time.
Ironically, just this week, I've been contacted by a mom in Chapel hill who wants to know my opinion on the diet, especially @ Johns Hopkins. Her daughter is already seen at Johns Hopkins just not in the keto clinic. I'm conflicted. She's already comfortablele with Johns Hopkins and trusts them but I just don't know if I can recommend the keto program there.
On a brighter note
Now for the good news. Despite Ben's issues, he con tines to show improvement in his focus,coordination, stamina and overall health. He also has had slow but persistent growth developmentally. We had a meeting at school to plan his transition into kindergarten next year. It went well and I really like the team. I think they've come up with a good individualized plan to help him. We've also enrolled him in music class, which he loves twice a week this summer. And I've asked Carrie to tutor him twice a week in pre-K skills and academics. We're trying to prevent him from "slipping" while he's out of school and maybe even gain some ground.
Another good turn of events is that when we had that blow up two weeks ago the Dr increased his Zonegran and Ben hasn't had a seizure since. So this has been the longest break in a couple months. He has had longer breaks before only to have the seizures return. So we're not out of the woods yet but were hopeful. But the best news of all is that we did an EEG last week (we did it locally to take up with us to JHH) and it showed only one small seizure when Ben was asleep. His local neurologist was really pleased. He wasn't willing to give all the credit to the diet (remember,he never really wanted us to do the diet). He thought it may be an improvement just b/c he's another year older and some decrease in seizures does occur with age, but this improvement was so significant. And Ben has just been more alert and focused all year (even with the one seizure a week). All that sub-clinical seizure activity is gone. It's so pretty to see a flat line EEG. I know it's the diet and it's proof to me that we need to continue the diet. Even if we have to change clinics.
We go up tomorrow to Johns Hopkins and back on Tues. I'll try to post a shorter update once we get back. Send us your good thoughts & prayers for a safe trip and a productive meeting with the team.
all the best to you and yours,
-Meg
Unfortunately, since I last posted,it's mostly been more of the same. Ben has continued to seize once a week. He's still having intermittent white/clay colored stools. Now his ketones are also fluctuating for no known reason just prior to the white stools. He also has had very high LDL (250-320), that's the bad cholesterol on your lipid test. Most distressing is that Johns Hopkins continues to be slow to respond if they respond at all.
It all came to a head two weeks ago. Ben had another seizure, another loss of ketones and another abnormal stool (all within a 3 day period) and no response from the Dr's to my repeated emails & phone calls. I had decided in March to try to get an appt in the clinic once a month for the summer months. I figured if they wouldn't deal with me from a distance, they'd deal with me face to face. If I didn't need the appt, I'd cancel them. I was talking to the Dr's secretary and he put us in for May, July & August. The only one he couldn't do was June since it was already booked. He told me to call the clinic manager and ask to be put in if someone canceled. Well,as I said, it was already a bad day. I called the clinic and was informed that Ben was not allowed to be seen more often than once every six months! Can you believe it!
So, never mind that he was having all these issues and that he was still seizing! They said they had limited resources and they needed to make room for the admission patients. See a problem here? I guess the priority is to get the kids enrolled, not to manage them once they're on the diet and having problems.
Well, as you can imagine, I FLIPPED OUT!. I was screaming and crying at the same time. I totally lost it on the lady. I finally calmed down and then she made the mistake of saying "I'll let the team know that you want to discontinue the diet".
So, then I flipped out all over again. I started yelling at her that I was NOT quitting the diet and I was NOT giving up on my son, but I was giving up on Johns Hopkins and that I would take Ben somewhere else.
One hour later the social worker called. This call didn't go much better. This is a women I haven't see except to pass in the hallway since last July. She called me up and started out by saying, "You don't talk Meg, let me talk". Not "I know you're upset, tell me what's going on" etc. She then read to me from the January clinic note, stating that it said how well Ben was doing! And she reprimanded me for being emotional and overwrought. First of all, the clinic note was talking about "how good Ben was doing" on the higher calorie count in regards to hunger. It had nothing to do with seizures. Also regardless of what it said, the note was FOUR MONTHS OLD! This fact seemed to escape the social worker. She then proceeded to tell me that the clinic had in fact been in contact with me. Never mind that she had never seen any of the numerous emails and that the only phone conversation I had was a voice mail message 3 weeks ago. When she finally did allow me to speak, I explained what had been happening since Jan. Every time I had a question she would say, "well I can't really address that, you'll have to speak to the physicians".... NO SHIT! Why do you think I keep calling! She finally added salt to the wound by saying, "well you know Meg, you may just have to accept that the diet isn't going to work for Ben".
What a blow. This, about a kid who had been seizure free for 3 months and when we were told repeatedly that he could be cured. I could accept what she said if I felt that the team had really tried to change his meds and find the right combo of med & diet (Like they said they would in Jan) But I truly feel that once he showed that he needed both diet and meds, they didn't want the hassle of dealing with the meds. Amazingly, in all my anger and all my tears the social worker never once said anything conciliatory or consoling. There's compassion for you.
Later on that night Ben's Dr did call me. We discussed what was happening including the continued poor response to my calls & emails. At one point he said "Yes, I got your email and I felt so bad, you sounded so down" (I was pleading with him for some guidance and assurance related to the ketones & white stool). I said to him "Yes I was depressed and I sent you that email over 3 weeks ago!"
I feel like I'm in an abusive marriage. They beat me up and then act contrite and promise not to do it again, only to repeat the pattern over and over. And I don't know how to break the cycle and I'm literally afraid to leave Johns Hopkins. I'm afraid on 2 levels. 1) We've been at JHH for a year now. If we try to go to another clinic they may say," if Hopkins couldn't find the answer for you, what can we do" and 2) You've already been on the diet a year without seizure control chances are you won't get control and it's dangerous to keep him on indefinitely.
I'm just so upset that I feel like we wasted so much time. And since Ben was seizure free, every seizure he's had since November, shouldn't have happened.
The plan is this. We go to JHH tomorrow. I'm going try to get them to understand how they are dropping the ball and impress on them how much we need their help. That they are probably Ben's last chance. I'm also going to ask them to let me titrate his meds and let them know how he's doing and if I need another med. I will also ask to please come back in July, if Ben isn't any better. Depending on their response, I'm calling the keto diet center in Charlotte, NC. I need to change before I waste anymore time.
Ironically, just this week, I've been contacted by a mom in Chapel hill who wants to know my opinion on the diet, especially @ Johns Hopkins. Her daughter is already seen at Johns Hopkins just not in the keto clinic. I'm conflicted. She's already comfortablele with Johns Hopkins and trusts them but I just don't know if I can recommend the keto program there.
On a brighter note
Now for the good news. Despite Ben's issues, he con tines to show improvement in his focus,coordination, stamina and overall health. He also has had slow but persistent growth developmentally. We had a meeting at school to plan his transition into kindergarten next year. It went well and I really like the team. I think they've come up with a good individualized plan to help him. We've also enrolled him in music class, which he loves twice a week this summer. And I've asked Carrie to tutor him twice a week in pre-K skills and academics. We're trying to prevent him from "slipping" while he's out of school and maybe even gain some ground.
Another good turn of events is that when we had that blow up two weeks ago the Dr increased his Zonegran and Ben hasn't had a seizure since. So this has been the longest break in a couple months. He has had longer breaks before only to have the seizures return. So we're not out of the woods yet but were hopeful. But the best news of all is that we did an EEG last week (we did it locally to take up with us to JHH) and it showed only one small seizure when Ben was asleep. His local neurologist was really pleased. He wasn't willing to give all the credit to the diet (remember,he never really wanted us to do the diet). He thought it may be an improvement just b/c he's another year older and some decrease in seizures does occur with age, but this improvement was so significant. And Ben has just been more alert and focused all year (even with the one seizure a week). All that sub-clinical seizure activity is gone. It's so pretty to see a flat line EEG. I know it's the diet and it's proof to me that we need to continue the diet. Even if we have to change clinics.
We go up tomorrow to Johns Hopkins and back on Tues. I'll try to post a shorter update once we get back. Send us your good thoughts & prayers for a safe trip and a productive meeting with the team.
all the best to you and yours,
-Meg
e shtunë, 12 prill 2008
Peaks and Valleys.....
Once again, it's been forever since I last posted. I'm sorry it's been so long. Our life always seems so busy plus, when I don't have good news to report, I keep putting off posting. I keep waiting so that I can report some good news and sometimes I just don't have the emotional energy to sit down and rehash depressing events and all our worries. I do promise, that from now on, I'll try to email folks and let them know when I've posted something new. That way you won't have to keep checking. Drop me an email if you want on the list.
Nine Months and still counting....
Ben is still seizing once every 1-2 weeks. We've slowly increased his depakote one capsule at a time after each seizure and just this week we added the last capsule. The depakote and zonegran meds are now back to the levels he was on when he started the diet. Even though we had a really good response when we first started the diet, I am really beginning to worry that the diet isn't going to work. If this last med increase doesn't control his seizures. I don't know what the Dr's are going to suggest. When we last saw the Dr's in Jan they reaffirmed that Ben has Doose epilepsy and that they believe the diet will ultimately cure him. They insist that it's just a matter of finding the right mix of medication and diet. Ted and I are really being to feel the stress. It's like we're running a marathon and it's all been uphill. I'm not asking for a nice long downhill but couldn't we just run on the flat for awhile. I told Ted the other day that I could do this diet for 2 years even 5 years if had the chance to settle in to it and we got seizure control. But the constant tweaking of the med and diet, with no improvement in seizures, really wears on us.
To add to the drama, Ben pulled another trick out of his bag. He started having white bowel movements on Tues (sorry to be gross, but our life is gross sometimes). He also completely lost all ketones on Tues. We kept testing his urine but he had no ketones at all. Usually he runs large to XL. Which is where we want him. He wasn't jaundiced, he felt good and was in a pretty good mood. By Tues night his ketones had come up to moderate but on Wens he had another seizure. All this past week he had intermittent white stools and low ketones. We can't figure out what's going on. His pediatrician saw him and ruled out hepatitis(liver) & cholecystitis (gallbladder). They insist that the low ketones and change in bowel movements are unrelated, that they are just occurring coincidentally but I'm not sure. Especially since his bowel movements have now returned to normal and his ketones are back up to XL. Ted and I have gone over it again and again and can't find any time that Ben got any forbidden food or any time when we may have miscalculated the diet. Even if either of those things happened, they usually only cause a drop in ketones not a complete loss of ketosis. What is also weird is that the ketones didn't drift down and then climb back up, they simply were gone, then returned at large. We even bought a new bottle of sticks but the results were the same. We're so worried that Ben might not be able to tolerate the diet anymore or that for some reason he simply can't maintain ketosis. It's funny, one moment we're complaining about the demands of the diet which isn't working very well and the next we're worried we might not get to stay on it. Can't we just have one month off the roller coaster ride?
On a brighter note....
The Sunshine state
We took a vacation to Delray Beach, Fl. It was a really great trip. We got to spend the whole week with my sister Ann & her family. My dad and David's mom & grandfather were also there. We had great weather and the kids had a great time at the beach and the pool. Ben loved walking on the sand in the surf with Ted. Grace was into digging in the sand and fearless as she is, she also got into the ocean. Here's some pics from the trip
Hopping down the Bunny Trail
We also had a really nice Easter holiday. First, my friend Dina came over to help color eggs (I can't cook an egg to save my soul. I can hard boil them but I can't do it without cracking the shells). Grace thought it was great (notice the black fingers in the pictures) but Ben took a little convincing. He was upset because I made him color eggs instead of watching Elmo. Once he colored the first one, he had a lot of fun. Easter Sunday was really nice, too. We spent the day with Ted's mom, Grandmother and his sister Ruth, her husband Kendall & their daughter Olivia. We had a beautiful day. It was sunny, warm and the flowers were all in bloom. The kids had an egg hunt after lunch and it was a big hit. All the kids found plenty of eggs but Grace kept stealing out of the Olivia's basket! I don't like to think of it as being greedy, just a little overzealous!
We know we couldn't have come this far without your love and support. Please keep us in your prayers. Pray for continued strength and optimism. We truly hope that you all are doing well and that you're enjoying the warmer weather.
Love,
Meg
Nine Months and still counting....
Ben is still seizing once every 1-2 weeks. We've slowly increased his depakote one capsule at a time after each seizure and just this week we added the last capsule. The depakote and zonegran meds are now back to the levels he was on when he started the diet. Even though we had a really good response when we first started the diet, I am really beginning to worry that the diet isn't going to work. If this last med increase doesn't control his seizures. I don't know what the Dr's are going to suggest. When we last saw the Dr's in Jan they reaffirmed that Ben has Doose epilepsy and that they believe the diet will ultimately cure him. They insist that it's just a matter of finding the right mix of medication and diet. Ted and I are really being to feel the stress. It's like we're running a marathon and it's all been uphill. I'm not asking for a nice long downhill but couldn't we just run on the flat for awhile. I told Ted the other day that I could do this diet for 2 years even 5 years if had the chance to settle in to it and we got seizure control. But the constant tweaking of the med and diet, with no improvement in seizures, really wears on us.
To add to the drama, Ben pulled another trick out of his bag. He started having white bowel movements on Tues (sorry to be gross, but our life is gross sometimes). He also completely lost all ketones on Tues. We kept testing his urine but he had no ketones at all. Usually he runs large to XL. Which is where we want him. He wasn't jaundiced, he felt good and was in a pretty good mood. By Tues night his ketones had come up to moderate but on Wens he had another seizure. All this past week he had intermittent white stools and low ketones. We can't figure out what's going on. His pediatrician saw him and ruled out hepatitis(liver) & cholecystitis (gallbladder). They insist that the low ketones and change in bowel movements are unrelated, that they are just occurring coincidentally but I'm not sure. Especially since his bowel movements have now returned to normal and his ketones are back up to XL. Ted and I have gone over it again and again and can't find any time that Ben got any forbidden food or any time when we may have miscalculated the diet. Even if either of those things happened, they usually only cause a drop in ketones not a complete loss of ketosis. What is also weird is that the ketones didn't drift down and then climb back up, they simply were gone, then returned at large. We even bought a new bottle of sticks but the results were the same. We're so worried that Ben might not be able to tolerate the diet anymore or that for some reason he simply can't maintain ketosis. It's funny, one moment we're complaining about the demands of the diet which isn't working very well and the next we're worried we might not get to stay on it. Can't we just have one month off the roller coaster ride?
On a brighter note....
The Sunshine state
We took a vacation to Delray Beach, Fl. It was a really great trip. We got to spend the whole week with my sister Ann & her family. My dad and David's mom & grandfather were also there. We had great weather and the kids had a great time at the beach and the pool. Ben loved walking on the sand in the surf with Ted. Grace was into digging in the sand and fearless as she is, she also got into the ocean. Here's some pics from the trip
Hopping down the Bunny Trail
We also had a really nice Easter holiday. First, my friend Dina came over to help color eggs (I can't cook an egg to save my soul. I can hard boil them but I can't do it without cracking the shells). Grace thought it was great (notice the black fingers in the pictures) but Ben took a little convincing. He was upset because I made him color eggs instead of watching Elmo. Once he colored the first one, he had a lot of fun. Easter Sunday was really nice, too. We spent the day with Ted's mom, Grandmother and his sister Ruth, her husband Kendall & their daughter Olivia. We had a beautiful day. It was sunny, warm and the flowers were all in bloom. The kids had an egg hunt after lunch and it was a big hit. All the kids found plenty of eggs but Grace kept stealing out of the Olivia's basket! I don't like to think of it as being greedy, just a little overzealous!
We know we couldn't have come this far without your love and support. Please keep us in your prayers. Pray for continued strength and optimism. We truly hope that you all are doing well and that you're enjoying the warmer weather.
Love,
Meg
e shtunë, 23 shkurt 2008
A long and winding road........
It's been a month since we got back from John's Hopkins and since my last post. I can't believe how fast time is going even though it's the dreary dead of winter. I can't imagine how fast the summer months will go once we have some fun activities added into our already busy schedule.
"Seizures are what my body does when my brain throws a temper tantrum"
Since we got back from JHH we increased Ben's depakote to 250 mg 3 x a day.
We made the change on a Tues & Ben had a seizure on Thurs, 2 days later. We held tight because we thought that there maybe a lag time between the dose increase and the therapeutic effect. Ben then went 3 weeks without a seizure and we were very excited because we were hopeful that we'd hit the magic combination of meds & diet. Then of course Ben got the flu and ended up having 2 seizures in one day. We told the JHH team but will keep the meds as they are for now because they never really get excited about febrile seizures. Ben is almost but not quite back up to his full dose of Depakote. While that's a little depressing, his mood is definitely better now that he's back on the med. He laughs a lot and has a good amount of energy. A huge difference from the near hysteria he was having in Oct when he was off the med. And even though he's only gained a few weeks between seizures, since we've increased the med his seizures have decreased in severity and duration. In fact the last several seizures were so short we didn't have time enough to give him his Diastat. We talked to our local neurologist about this change in seizure activity and he was quite pleased. He said that stopping seizures is very similar to turn a faucet off. (I thought it was more like electricity, it's either on or off. You're either having seizures or your not). Dr Wooten said that the fact that his seizures have decreased in intensity & duration means that we're going in the right direction. He's always been supportive but pessimistic. This visit he was hopeful that we might finally get some seizure control.
Reading, Writing & 'Rithmetic
Ben finally had his psych eval from his school psychologist. (It was on their "to do" list since last May.) We also got updates from his teachers & his therapists (speech, PT & OT). The overall evaluation is that Ben has "significant, global delay". They have him from 18 months to 26 months developmentally depending on the area they are testing & the type of testing they use. We knew Ben was definitely delayed but it was a kick in the pants to see it in writing. We also know that some of this outcome has to do with the standardized testing. For instance, they hand him scissors and ask him to cut paper. Ben can't do that but if you get him started he does fine. Unfortunately, they're not allowed to do that. Another task is for Ben to build a "train" with building blocks. Well, he won't even play with blocks. So, he fails the test. But overall there's no doubt that Ben needs significant, intensive intervention if he's going to catch up or at least stop falling so far behind. Unfortunately, his school district doesn't believe in holding back kindergarten aged children. I think he could use another year in pre-school but I would like him to be in a "mainstream" preschool with "on target" kids. He needs to be challenged academically and have daily contact with normally developing kids in a classroom setting. We're all going to reevaluate in May and try to figure out what's best for next year. I just don't know if we have a lot of options. In the meantime, they've identified Ben as "other medically impaired" which will give him more classroom support. He also qualifies for the extended school year (a whopping 2 extra weeks at the end of the normal school year). But we're going to enroll him in every class we can find, music, gym etc. Just to try to increase his exposure to group activities and various social settings.
One thing I will say is that just when I'm thoroughly depressed over Ben's delay he throws a curve ball at me. Here's a kid that can't consistently tell you his name or age. But the other night, I came home from work, took a shower and sat down to color with Ben. I was in my pajamas and had a purple turbie twist on my head (think towel for those of you who don't know). Ben kept looking at me while we were coloring and I finally said, "what's up Ben?" and he said "nice hat mom". Go figure!!!
Bon Appetit!
No matter what we're dealing with,Ted and I are so lucky, We have so many friends and family members that help us out anyway they can. Just a couple weeks ago, I had a bunch of friends over to cook up some keto meals for Ben. It was our second session since he's started the diet and it's a major help for me. At one point we had 16 people in the kitchen at one time. And it was fairly well organized and relatively quiet, because everyone had to concentrate on the weighing out the food. We had 7 different "stations", each station made a 2 different meals. Plus we had a labeling station where the meals were labeled and we kept a running total. We ended up making 8 different meals and 3 different snacks. By the end of the day we made hundreds of meals and just as many snacks. It is such a major help for me. Keto cooking isn't hard, it's just really tedious and Ben needs 3 meals and 3 snacks everyday. There's just no way I could do cook that much on my own. Because of everyone help, I can now grab something out of the freezer, add milk for Ben to drink and he's ready to go.
It makes life a whole lot easier.
I hope everyone is doing well and staying healthy.
Keep the faith, spring is around the corner!
Love to everyone,
Meg
"Seizures are what my body does when my brain throws a temper tantrum"
Since we got back from JHH we increased Ben's depakote to 250 mg 3 x a day.
We made the change on a Tues & Ben had a seizure on Thurs, 2 days later. We held tight because we thought that there maybe a lag time between the dose increase and the therapeutic effect. Ben then went 3 weeks without a seizure and we were very excited because we were hopeful that we'd hit the magic combination of meds & diet. Then of course Ben got the flu and ended up having 2 seizures in one day. We told the JHH team but will keep the meds as they are for now because they never really get excited about febrile seizures. Ben is almost but not quite back up to his full dose of Depakote. While that's a little depressing, his mood is definitely better now that he's back on the med. He laughs a lot and has a good amount of energy. A huge difference from the near hysteria he was having in Oct when he was off the med. And even though he's only gained a few weeks between seizures, since we've increased the med his seizures have decreased in severity and duration. In fact the last several seizures were so short we didn't have time enough to give him his Diastat. We talked to our local neurologist about this change in seizure activity and he was quite pleased. He said that stopping seizures is very similar to turn a faucet off. (I thought it was more like electricity, it's either on or off. You're either having seizures or your not). Dr Wooten said that the fact that his seizures have decreased in intensity & duration means that we're going in the right direction. He's always been supportive but pessimistic. This visit he was hopeful that we might finally get some seizure control.
Reading, Writing & 'Rithmetic
Ben finally had his psych eval from his school psychologist. (It was on their "to do" list since last May.) We also got updates from his teachers & his therapists (speech, PT & OT). The overall evaluation is that Ben has "significant, global delay". They have him from 18 months to 26 months developmentally depending on the area they are testing & the type of testing they use. We knew Ben was definitely delayed but it was a kick in the pants to see it in writing. We also know that some of this outcome has to do with the standardized testing. For instance, they hand him scissors and ask him to cut paper. Ben can't do that but if you get him started he does fine. Unfortunately, they're not allowed to do that. Another task is for Ben to build a "train" with building blocks. Well, he won't even play with blocks. So, he fails the test. But overall there's no doubt that Ben needs significant, intensive intervention if he's going to catch up or at least stop falling so far behind. Unfortunately, his school district doesn't believe in holding back kindergarten aged children. I think he could use another year in pre-school but I would like him to be in a "mainstream" preschool with "on target" kids. He needs to be challenged academically and have daily contact with normally developing kids in a classroom setting. We're all going to reevaluate in May and try to figure out what's best for next year. I just don't know if we have a lot of options. In the meantime, they've identified Ben as "other medically impaired" which will give him more classroom support. He also qualifies for the extended school year (a whopping 2 extra weeks at the end of the normal school year). But we're going to enroll him in every class we can find, music, gym etc. Just to try to increase his exposure to group activities and various social settings.
One thing I will say is that just when I'm thoroughly depressed over Ben's delay he throws a curve ball at me. Here's a kid that can't consistently tell you his name or age. But the other night, I came home from work, took a shower and sat down to color with Ben. I was in my pajamas and had a purple turbie twist on my head (think towel for those of you who don't know). Ben kept looking at me while we were coloring and I finally said, "what's up Ben?" and he said "nice hat mom". Go figure!!!
Bon Appetit!
No matter what we're dealing with,Ted and I are so lucky, We have so many friends and family members that help us out anyway they can. Just a couple weeks ago, I had a bunch of friends over to cook up some keto meals for Ben. It was our second session since he's started the diet and it's a major help for me. At one point we had 16 people in the kitchen at one time. And it was fairly well organized and relatively quiet, because everyone had to concentrate on the weighing out the food. We had 7 different "stations", each station made a 2 different meals. Plus we had a labeling station where the meals were labeled and we kept a running total. We ended up making 8 different meals and 3 different snacks. By the end of the day we made hundreds of meals and just as many snacks. It is such a major help for me. Keto cooking isn't hard, it's just really tedious and Ben needs 3 meals and 3 snacks everyday. There's just no way I could do cook that much on my own. Because of everyone help, I can now grab something out of the freezer, add milk for Ben to drink and he's ready to go.
It makes life a whole lot easier.
I hope everyone is doing well and staying healthy.
Keep the faith, spring is around the corner!
Love to everyone,
Meg
e martë, 22 janar 2008
There's no place like home....
We're back. It was a very long trip up and back to Baltimore. No matter what we do, we always leave late and end up checking in after 10pm. We just don't travel very fast anymore. Luckily Ben was a real trooper. He didn't get to eat dinner until 8pm (his last meal was @ noon) and we never even heard a whimper. Then when we got there, he went right to sleep without a problem. A minor miracle.
We're now getting to recognize the hotel staff. The bell captains and the concierge (both day & night). It's kind of comforting and also kind of sad. We stay at the Radisson Lord Baltimore at the Inner Harbor. JHH is so cool. They have an accommodations office that books rooms for patient's & families at a major discount. This hotel doesn't have a pool but it has a Starbucks in the lobby, and has a CVS & a metro stop across the street. It's only 25 cents & a 10 min metro ride to the hospital. The metro line ends underneath the JH hospital. Right between outpatient & inpatient. How cool is that! They also provide a free shuttle service to the hospital but you're at the mercy of their schedule and I'm too impatient for that. Besides the metro is clean & fun (definitely not New York).
We saw the big brains @ 10am. They still feel that we're doing the diet correctly and that we don't need to change the diet. They are increasing Ben's depakote and said if they have to, they will take him all the way back up to 375mg 3 x day which is a huge dose. He was having platelet & coagulation concerns on the high dose but I guess it might be a necessary evil. The plan is to get his seizures stopped. Hold tight for a year & then try to wean the meds again. I think they said they might try to wean off the zonegran sooner if he responds well to the higher depakote dose, but I might have that wrong. Ben does have elevated triglycerides, not surprising with all the butter he eats. We're repeating the levels in a couple weeks and may have to consider statins to get him through. So we may trade a seizure med for a lipid lowering med.It all seems so crazy at times but I keep telling myself that it's not forever and that it's worth it.
The big brains did tell us that they have not altered their opinion that Ben has Doose epilepsy and that they still feel that he has a good chance at becoming seizure free & off meds. Especially considering how well he responded initially. They said that there are hundreds of epileptic syndromes and each one can have several variations. So even though Ben's seizures started earlier than usual and that his seizures present differently, they still feel that Doose is the correct diagnosis. This would be a very good thing since Doose responds really well to the diet.
Lastly we talked about the communication breakdown. Both team Dr's sort of blamed each other (this happened when each Dr was alone with us)and said that they are usually pretty good at keeping up. They promised to do better and gave us another email address to use. They also said that if they didn't respond to an email within 3 days to call the clinic. I'm not sure how much improvement we'll see. I talked to the dietitian last Thurs and we discussed the communication breakdown. Ted then emailed her on Sat asking for another copy of the diet CD-ROM (this is a vital tool for making the diet menus). He emailed her saying we'd see her on Tues and could she bring a copy to the clinic with her. She admitted this morning that she saw his email but never read it. So much for the new and improved. Then we find out that our main Dr is going to be on vacation for 2 weeks in Feb and that the dietitian will be on maternity leave for 3 months starting in April. At least we all know now that there has been a problem. I now know when and how to make a stink and hopefully they will be more responsive when I do. My biggest hope is that we get Ben's seizures under control then I won't have to worry about frequent emails & phone calls. I did ask to return in April even though we're not expected again till July. I think we'll get better attention and care if they actually see us in clinic. If all is going well by then, I can always cancel. We increased Ben's depakote today and Ben is due for his seizure by Thurs or Friday so we'll know more then. Keep your fingers crossed.
thanks to everyone for your love & support
Hope you and yours are doing well.
love,
Meg
We're now getting to recognize the hotel staff. The bell captains and the concierge (both day & night). It's kind of comforting and also kind of sad. We stay at the Radisson Lord Baltimore at the Inner Harbor. JHH is so cool. They have an accommodations office that books rooms for patient's & families at a major discount. This hotel doesn't have a pool but it has a Starbucks in the lobby, and has a CVS & a metro stop across the street. It's only 25 cents & a 10 min metro ride to the hospital. The metro line ends underneath the JH hospital. Right between outpatient & inpatient. How cool is that! They also provide a free shuttle service to the hospital but you're at the mercy of their schedule and I'm too impatient for that. Besides the metro is clean & fun (definitely not New York).
We saw the big brains @ 10am. They still feel that we're doing the diet correctly and that we don't need to change the diet. They are increasing Ben's depakote and said if they have to, they will take him all the way back up to 375mg 3 x day which is a huge dose. He was having platelet & coagulation concerns on the high dose but I guess it might be a necessary evil. The plan is to get his seizures stopped. Hold tight for a year & then try to wean the meds again. I think they said they might try to wean off the zonegran sooner if he responds well to the higher depakote dose, but I might have that wrong. Ben does have elevated triglycerides, not surprising with all the butter he eats. We're repeating the levels in a couple weeks and may have to consider statins to get him through. So we may trade a seizure med for a lipid lowering med.It all seems so crazy at times but I keep telling myself that it's not forever and that it's worth it.
The big brains did tell us that they have not altered their opinion that Ben has Doose epilepsy and that they still feel that he has a good chance at becoming seizure free & off meds. Especially considering how well he responded initially. They said that there are hundreds of epileptic syndromes and each one can have several variations. So even though Ben's seizures started earlier than usual and that his seizures present differently, they still feel that Doose is the correct diagnosis. This would be a very good thing since Doose responds really well to the diet.
Lastly we talked about the communication breakdown. Both team Dr's sort of blamed each other (this happened when each Dr was alone with us)and said that they are usually pretty good at keeping up. They promised to do better and gave us another email address to use. They also said that if they didn't respond to an email within 3 days to call the clinic. I'm not sure how much improvement we'll see. I talked to the dietitian last Thurs and we discussed the communication breakdown. Ted then emailed her on Sat asking for another copy of the diet CD-ROM (this is a vital tool for making the diet menus). He emailed her saying we'd see her on Tues and could she bring a copy to the clinic with her. She admitted this morning that she saw his email but never read it. So much for the new and improved. Then we find out that our main Dr is going to be on vacation for 2 weeks in Feb and that the dietitian will be on maternity leave for 3 months starting in April. At least we all know now that there has been a problem. I now know when and how to make a stink and hopefully they will be more responsive when I do. My biggest hope is that we get Ben's seizures under control then I won't have to worry about frequent emails & phone calls. I did ask to return in April even though we're not expected again till July. I think we'll get better attention and care if they actually see us in clinic. If all is going well by then, I can always cancel. We increased Ben's depakote today and Ben is due for his seizure by Thurs or Friday so we'll know more then. Keep your fingers crossed.
thanks to everyone for your love & support
Hope you and yours are doing well.
love,
Meg
e diel, 20 janar 2008
We're off to see the wizards.....
Wish us well folks. We leave tomorrow to consult with the big brains at Johns Hopkins. They finally called last week, after several frustrated emails from me. I talked to the dietitian and one of the Dr's who runs the clinic. The overall decision was to increase Ben's meds rather than change the diet. They both said that since Ben's ketones have been so high, they felt that the diet wasn't the problem. Also that in their experience tweaking the diet (as in small changes)doesn't make much of a difference with seizure control. I've also noticed that when Ben misses food or fluids his ketones actually drop to moderate or large but when he eats every bite of food and drinks every drop, his ketones are XL. When I told the dietitian this, she said it confirmed for her that we shouldn't alter the diet. She said that even though the diet is a calorie restricted diet, some kids actually burn up their ketones when their caloric intake gets too low. The Dr said that some Doose kids need to stay on both meds and the diet in order to get seizure control. the plan is to try to regain seizure control and get Ben seizure free for one year. Then and only then will we try again to wean meds. So at that time he told us to increase Ben's depakote. This was a week ago on Friday.
Unfortunately since then Ben had another seizure. Exactly seven days since the increase in med. So the weekly seizure pattern continues. Ted and I are really frustrated and started to get depressed. I'm really worried that the Dr's might have be wrong with the diagnosis and positive prognosis. Ben's been having seizure since he was an infant and the longest we've ever gone between seizures has been 18 weeks.
Because we had gotten such good news in July and because we initially had such a great response with the diet, the recurrence of seizures is at times all the harder to bear.
We really hope the Dr's can give us some good news. Say a prayer for us and keep your fingers crossed that they'll be able to figure out the magic combination of meds and diet.
I sure would like to stop counting the days between seizures and start marking off the weeks without them.
Unfortunately since then Ben had another seizure. Exactly seven days since the increase in med. So the weekly seizure pattern continues. Ted and I are really frustrated and started to get depressed. I'm really worried that the Dr's might have be wrong with the diagnosis and positive prognosis. Ben's been having seizure since he was an infant and the longest we've ever gone between seizures has been 18 weeks.
Because we had gotten such good news in July and because we initially had such a great response with the diet, the recurrence of seizures is at times all the harder to bear.
We really hope the Dr's can give us some good news. Say a prayer for us and keep your fingers crossed that they'll be able to figure out the magic combination of meds and diet.
I sure would like to stop counting the days between seizures and start marking off the weeks without them.
e enjte, 10 janar 2008
The good, the bad and the ugly.....
The Good
We've finally had some good news come our way. Hopefully it's the beginning of a trend. Last week my manager at Duke said that she would allow me to continue in my current position in the adult intensive care unit. That means I can continue to work four weekend shifts a month with no loss in pay (they had been trying to make me work every Saturday & Sunday or they were going to drastically cut my salary). I give a lot of credit to my unit manager Miranda. She has a special needs son and knows what we're struggling with. I don't think that upper management was as empathetic to my situation but I think Miranda really went to bat for me. The nicest thing about this decision is that I will now be able to give up some of my hours at my other job (at least for the winter months) and spend more time at home.
The Bad
Ben has continued to have a seizure every week. That makes 8 seizures in 9 weeks (with only 2 changes made to try to regain seizure control). One seizure a week would be ok if he had been have 40-50 seizures a week. But right now he's having the same frequency of seizures as he did pre-diet. It also wouldn't be as depressing if we never had seizure control. But he was really well controlled. He only had 2 seizures from July till the end of Oct and both occurred when he was sick (so they kind of don't count). When the seizures returned we really hoped we could figure out what we were doing wrong and fix it. And the sooner the better.
The Ugly
The communication problems with the team at John's Hopkins have not improved. First we had a scheduling problem. We were told in Oct that our return appt was on 1/15. We even confirmed that in an email when we got home. So Ted and I both changed our work schedules, made our reservations and even planned a long weekend so we could visit with family. Then just last week we got the reminder letter from JHH and it said our appt was on 1/22! So I called the clinic the next morning to double check and the lady who runs the clinic was abrupt and unconcerned about the situation. Even though she was the one who confirmed the appt via email. She was not apologetic about any problems this caused us. She only asked if we wanted to move our appt to April! So much for the milk of human kindness.
Then to add salt to the wound, the keto team continues to be slow to respond to our emails, if they respond at all. Ben had a seizure last Thursday, I emailed the team to let them know (as I do after every seizure). I got a response from one of the Dr's on Saturday, which was 2 days after my email(pretty good turn around time, much better than 7-10days. I was hopeful). The Dr said he would talk to the dietitian on Monday and get back to me with a plan. And that was the end. Monday came & went, Tues came & went, then Wens & finally Thursday. A full 7 days and still no answer. Same old pattern. Then of course Ben had another seizure. I knew he would. Why would his seizures change when we hadn't made any changes to control them. I told my friends that I was waiting for Ben to have his seizure today and then I was going to really get ugly. I had emailed the dietitian earlier this morning to update her on some things because I was hoping she had met with the Dr and was discussing changes in Ben's diet. She emailed back and not only had they not met, she apparently was unaware of Ben's seizure activity or even his current med status even though she had been copied on every one of my emails! Unbelievable. I had written the whole team on 12/20 and complained about the poor response from the team. And still their communication has not improved. Apparently they either are not reading my emails or know and don't care. I'm not sure which is the answer but both options are equally depressing. So I sent the team another email, restating my concerns and complaints,in a little stronger language, and got no response. Then Ben had his seizure and I got really mad. I sent the Dr a nasty email and asked where he was and what was the plan! I asked if he was unwilling to make any changes unless he saw Ben. I said if that was the case, I'd be happy to drive Ben up there anytime they wanted.
That finally got a response, from the other Dr on the team. Guess what he said.
That they were really busy this week because they were having the keto admission week (apparently it's more important to keep the keto kids coming in than it is to follow up with the kids already enrolled!) He also said that I shouldn't be emailing the team, it's more convenient if I called and that I should only call the other physician. Not surprising
Now let me first tell you that this Dr has only emailed me once before and that was after my complaint email on 12/20. He emailed then to tell me that the other Dr was out on vacation, what is he the gate keeper and don't they have "out of office messages" on their email system? that would give some explanation as to why I never know if they get my emails. I think it's ironic that this Dr is now telling me that they prefer I call the clinic when I have questions. On 12/20 I asked him to call me and he emailed me instead. I also seriously doubt that calling is preferred over emailing. Why would they want me to call them and disrupt their day. They won't have any of Ben's information with them and they can't consult with the other team members. With an email, they can answer at their convenience, it's clearer because it's in writing, I can email more than one member at a time or easily forward info as needed and they have the email as a permanent part of the medical record. I can't believe that phone calls are really want they want. I think this is just a way to excuse their behavior and put the blame back on me.
The Dr said that the clinic social worker will call me tomorrow but if I don't hear from her by noon, I should call her and keep calling. Great! The worst insult is that this Dr said that they were really busy this week. I wrote back and said, that I was really sorry they are so busy. I was also sorry that I had been emailing the entire team for the past 6 months if that was not the protocol. I explained that I had been told during admission to do just that and had in fact been rebuked in Oct when the other dr thought I hadn't copied the dietician on my email. I also asked him that if I was misinformed about who and how to contact the clinic staff why has it taken them 6 months to tell me!
I was so angry during these emails my hands were shaking! I almost couldn't type. I knew the diet would be hard but I never thought dealing with the medical team would add to the stress. I know patients and their families quit the program everyday because it's too difficult or it's not working, but now I wonder how many people quit due to lack of support from the medical team. To make matters worse, our neurologist here at home has always been supportive but pessimistic about the diet. We've seen him twice since our last visit to JHH. When we tell him how Ben's been doing he asks what the team has said and I have to tell him that they haven't gotten back to us yet. He even said on our last visit, I don't know why your doing the diet if it's not working.
I wouldn't be so angry with the team if we had consistently made changes trying to control the seizures and he was still seizing. I would be depressed but not angry. I just feel that since he had been seizure free, every day that goes by without making a change & getting seizure control is a lost day. And every seizure he has is one that should never have happened. Especially when you realize that before this his only seizures occurred when he was ill and Ben hasn't been sick in months. So if we had aggressively sought to correct the diet/meds and regain seizure control, he could've been seizure free this whole time.
I am determined to continue this diet and seek a cure or at least the best possible seizure control with or without JHH. I'll take Ben to the programs in Charlotte or Pittsburgh. I'll even start making changes myself if I have to, until I can find someone else to manage his care. This is not over.
We've finally had some good news come our way. Hopefully it's the beginning of a trend. Last week my manager at Duke said that she would allow me to continue in my current position in the adult intensive care unit. That means I can continue to work four weekend shifts a month with no loss in pay (they had been trying to make me work every Saturday & Sunday or they were going to drastically cut my salary). I give a lot of credit to my unit manager Miranda. She has a special needs son and knows what we're struggling with. I don't think that upper management was as empathetic to my situation but I think Miranda really went to bat for me. The nicest thing about this decision is that I will now be able to give up some of my hours at my other job (at least for the winter months) and spend more time at home.
The Bad
Ben has continued to have a seizure every week. That makes 8 seizures in 9 weeks (with only 2 changes made to try to regain seizure control). One seizure a week would be ok if he had been have 40-50 seizures a week. But right now he's having the same frequency of seizures as he did pre-diet. It also wouldn't be as depressing if we never had seizure control. But he was really well controlled. He only had 2 seizures from July till the end of Oct and both occurred when he was sick (so they kind of don't count). When the seizures returned we really hoped we could figure out what we were doing wrong and fix it. And the sooner the better.
The Ugly
The communication problems with the team at John's Hopkins have not improved. First we had a scheduling problem. We were told in Oct that our return appt was on 1/15. We even confirmed that in an email when we got home. So Ted and I both changed our work schedules, made our reservations and even planned a long weekend so we could visit with family. Then just last week we got the reminder letter from JHH and it said our appt was on 1/22! So I called the clinic the next morning to double check and the lady who runs the clinic was abrupt and unconcerned about the situation. Even though she was the one who confirmed the appt via email. She was not apologetic about any problems this caused us. She only asked if we wanted to move our appt to April! So much for the milk of human kindness.
Then to add salt to the wound, the keto team continues to be slow to respond to our emails, if they respond at all. Ben had a seizure last Thursday, I emailed the team to let them know (as I do after every seizure). I got a response from one of the Dr's on Saturday, which was 2 days after my email(pretty good turn around time, much better than 7-10days. I was hopeful). The Dr said he would talk to the dietitian on Monday and get back to me with a plan. And that was the end. Monday came & went, Tues came & went, then Wens & finally Thursday. A full 7 days and still no answer. Same old pattern. Then of course Ben had another seizure. I knew he would. Why would his seizures change when we hadn't made any changes to control them. I told my friends that I was waiting for Ben to have his seizure today and then I was going to really get ugly. I had emailed the dietitian earlier this morning to update her on some things because I was hoping she had met with the Dr and was discussing changes in Ben's diet. She emailed back and not only had they not met, she apparently was unaware of Ben's seizure activity or even his current med status even though she had been copied on every one of my emails! Unbelievable. I had written the whole team on 12/20 and complained about the poor response from the team. And still their communication has not improved. Apparently they either are not reading my emails or know and don't care. I'm not sure which is the answer but both options are equally depressing. So I sent the team another email, restating my concerns and complaints,in a little stronger language, and got no response. Then Ben had his seizure and I got really mad. I sent the Dr a nasty email and asked where he was and what was the plan! I asked if he was unwilling to make any changes unless he saw Ben. I said if that was the case, I'd be happy to drive Ben up there anytime they wanted.
That finally got a response, from the other Dr on the team. Guess what he said.
That they were really busy this week because they were having the keto admission week (apparently it's more important to keep the keto kids coming in than it is to follow up with the kids already enrolled!) He also said that I shouldn't be emailing the team, it's more convenient if I called and that I should only call the other physician. Not surprising
Now let me first tell you that this Dr has only emailed me once before and that was after my complaint email on 12/20. He emailed then to tell me that the other Dr was out on vacation, what is he the gate keeper and don't they have "out of office messages" on their email system? that would give some explanation as to why I never know if they get my emails. I think it's ironic that this Dr is now telling me that they prefer I call the clinic when I have questions. On 12/20 I asked him to call me and he emailed me instead. I also seriously doubt that calling is preferred over emailing. Why would they want me to call them and disrupt their day. They won't have any of Ben's information with them and they can't consult with the other team members. With an email, they can answer at their convenience, it's clearer because it's in writing, I can email more than one member at a time or easily forward info as needed and they have the email as a permanent part of the medical record. I can't believe that phone calls are really want they want. I think this is just a way to excuse their behavior and put the blame back on me.
The Dr said that the clinic social worker will call me tomorrow but if I don't hear from her by noon, I should call her and keep calling. Great! The worst insult is that this Dr said that they were really busy this week. I wrote back and said, that I was really sorry they are so busy. I was also sorry that I had been emailing the entire team for the past 6 months if that was not the protocol. I explained that I had been told during admission to do just that and had in fact been rebuked in Oct when the other dr thought I hadn't copied the dietician on my email. I also asked him that if I was misinformed about who and how to contact the clinic staff why has it taken them 6 months to tell me!
I was so angry during these emails my hands were shaking! I almost couldn't type. I knew the diet would be hard but I never thought dealing with the medical team would add to the stress. I know patients and their families quit the program everyday because it's too difficult or it's not working, but now I wonder how many people quit due to lack of support from the medical team. To make matters worse, our neurologist here at home has always been supportive but pessimistic about the diet. We've seen him twice since our last visit to JHH. When we tell him how Ben's been doing he asks what the team has said and I have to tell him that they haven't gotten back to us yet. He even said on our last visit, I don't know why your doing the diet if it's not working.
I wouldn't be so angry with the team if we had consistently made changes trying to control the seizures and he was still seizing. I would be depressed but not angry. I just feel that since he had been seizure free, every day that goes by without making a change & getting seizure control is a lost day. And every seizure he has is one that should never have happened. Especially when you realize that before this his only seizures occurred when he was ill and Ben hasn't been sick in months. So if we had aggressively sought to correct the diet/meds and regain seizure control, he could've been seizure free this whole time.
I am determined to continue this diet and seek a cure or at least the best possible seizure control with or without JHH. I'll take Ben to the programs in Charlotte or Pittsburgh. I'll even start making changes myself if I have to, until I can find someone else to manage his care. This is not over.
e hënë, 31 dhjetor 2007
Should auld acquaintance be forgot.....
To one and all, I'm so sorry that it's been so long since my last posting. I have not forgotten you, I just couldn't bring myself to write. The McDaniel family has had some rough times since last I wrote at Halloween. It's been pretty busy too. And frankly, I didn't want to write with bad news. So I kept waiting for our luck to change and next thing you know eight weeks have passed!
A long and winding road.....
A week after my last post Ben had a seizure. He had a little head cold at the time, so we were disappointed but not too alarmed. The ten days later he had another. No illness this time. Since then, he has steadily increased his seizure activity. Currently, he's having one every 7-10 days. (Only 2 have been associated with illness) Pretty much the same seizure pattern he had pre-diet. There are several confounding factors. 1) DIET: Since his last visit to Johns Hopkins, we've increased his calories from 800 cal/day to 1200 cal/day. This increase happened over the course of a month. A friend of ours who has done the diet said that her son didn't have a 400cal increase the whole 2 years he was on the diet.The nutritionist increased his calories because of his acute hunger and weight loss. He dropped down from 39 lbs to 31 since starting the diet. Ben is much happier with this calorie amount and we've been able to work in different meal plans d/t the increased calories. He's only gained 0.5-1lb and even then that fluctuates. So I'm hoping JHH will let him stay on the current calorie count. 2)LIQUIDS: Ben was an emotional wreck most of Oct & Nov.Even sleeping in our bed most nights. I think it was d/t the withdrawal of depakote which is a mood stabilizer and that he suddenly became aware of his hunger when he was on 800 cal. So, Ted and I let him drink pretty much any amount he wanted. He's supposed to be restricted to 1200cc/day but since his ketones were consistently Large-XL we let him slide. When the seizures started again with regularity we tightened up his fluid intake and since then his ketones have been XL almost every night. (Unfortunately no improvement in seizures as yet) One side note. Ben has to drink sugar free,decaf drinks. Last week I accidentally made his tea with regular tea bags. Ben drank a whole days worth of caffeinated tea. WOW was he flying! Up 3 times in the night. Up for good @ 5am and no nap! But most amazing, he was in a great mood! Laughing & jumping around. More words & better stamina & behavior. He was so much fun to have around. His ketones did drop to Large but I'm going to ask on our next trip if he can have one caffeine drink a day. With his seizure activity, I'm sure they'll say no but it's worth asking. The difference was amazing! 3) MEDS: We've weaned the keppra off completely. The depakote was stoppped on Sept 30th and although Ben's mood was miserable, he didn't start having seizures until we started weaning the Zonegran. We got down to 1/2 a capsule twice a day & then they came back. At this point we've gone back up on the Zonegran to 1 capsule twice a day and added back the depakote at 1 capsule twice a day (the depakote was really restarted because Ted and I kept asking for it d/t Ben's irritability.) We started the depakote on a Tues night @ bedtime and the next morning we saw an improvement in mood. We got him dressed & out the door to school without complaint. We'd been dragging him crying all the way since the middle of Oct. Ben's mood continues to improve but we haven't seen an improvement in seizure control. Ted and I are really worried that the Doose diagnosis we got in July as well as the optimistic prognosis may be wrong. I've emailed the team but I'm having a hard time getting a response from them. They're taking 7-10 days to reply if I get a response at all. And usually it's a cursory response omitting several of my questions. When asked specifically about the Doose diagnosis & prognosis, I was told "some kids need to stay on the diet and medication". How much med? How long? Does this change the long term prognosis? I don't call them because I don't feel we're in crisis mode and I'm saving that card for when I really need it. But sometimes we really feel isolated. Especially when you realize that we're dealing not just with meds but with a medical diet. So when we don't get any answer for several days, we have to make a "best guess" with every meal and every snack. Not what I expected from world renowned JHH.
To Medicaid or not to Medicaid, that is the question....
In late Oct we got notice from the North Carolina Social services office that Ben was at the top of the list for the medicaid Cap DD/MR program. This is a federally funded program for children who have a wide range of developmental delay or are mentally retarded. The program provides funding for a variety of services. We applied for the program when Ben was a year old and have been on the waiting list ever since. So we were very excited when we got the news. Then the other shoe dropped! To say that the application process is complicated is grossly understated. First I had to go to the social services office in Hillsborough to apply.(I went in 8:30 am sharp, the Friday before Thanksgiving and the room was already packed) I'll spare you most of the colorful details of the lobby. The drunk man sitting next to me, the 2 pregnant teenagers waiting to apply for food stamps. The highlight was the vigorous debate between 3 ladies as to whether Thanksgiving was this Saturday or the next. One women kept asking what today's date was as if that would support her argument that Thanksgiving was next Saturday. After an hour, I finally was shown into an office, only to spend the next 20 mins trying to convince the case manager that I was in the right office and that Ben did qualify for Cap DD/MR. She kept asking for our household income,even though it has no bearing on his application. I kept repeating that I was there for Cap DD/MR and she kept saying she never heard of it. She then asked me was I there to place Ben in an institution! That's apparently what she did, and all she knew how to do. Finally she went out and asked her supervisor. She came back to tell me that I needed to see someone 2 doors down (in the same office) so back out to the waiting area I went. A colossal case of the left hand not knowing what the right hand is doing. When I finally spoke to the right person, she knew exactly what I was talking about and what I needed to do. Unfortunately that was as good as it got. I then found out that even though I have hundreds of papers from multiple therapists, & physicians, the social services office would need to evaluate Ben to determine what support he needs. Also, that I would have to go to the social security office (a different federal entity) in Durham and apply for disability. Ben would be turned down, we already knew that but it's a prerequisite and I had to apply anyway ( I shudder to think what my wait will be like in that lobby). I also found out that as part of the application process I had to sign a release that gives the federal government access to all of Ben's current and future finances so that they can recoup any funds spent on his care. If I don't sign the release, I can't even apply. To add insult to injury, no one could tell me what services Ben "might" receive and what the cost of the services might be. It was insane. Everyone kept saying that they couldn't tell me what he would qualify for until they had evaluated him (again, remember the fact that he's already receiving therapy 8 times a week. they still seem unable to give a best guess)I said I just want an overall list of services provided as well as a fee for service list. they acted like I wasn't speaking English. All I wanted to know was how much Ben would be charged so we could determine if it was worth applying. I didn't want everyone to go through a lengthy application process only to decline it later. The case manager also told me I would need to close Ben's college fund. (He's only four years old and already I have to decide between funding now vs a future possibility of Ben going to college. How depressing! What do I have a crystal ball! How parents can guess the college prospects of their "normal kids"?!). Also, once approved, there is a minimum amount of services Ben must use annually. It's not like a secondary insurance card to be used as a back up. Now the fun part really starts. After much investigating, on my own, I found out the following: Cap DD/MR will fund the following: Anything insurance pays for but after insurance pays, so basically our co-pay. It won't pay for anything insurance won't cover. So "no" to the dietician at JHH ($800-$1000), "no" for the meds he has to get from the compounding pharmacy ($85 for a bottle of tylenol & Ibuprofen). It also won't pay for PT, OT or speech because he's already getting them from school. Even though school is only open 9 months of the year (also closed on teacher work days, holidays and semester breaks,etc). It won't pay for the teacher's aide that goes with him to school ($10/hr). It will pay for assistive devices (Ben doesn't use or need any). It will pay for a babysitter for respite care but the sitter can't watch Grace, only Ben. (So,no help there) It will pay for a bus/van & driver for transportation but the driver can't give any rescue medication should Ben have a seizure. (So, no thank you) Finally, the multitude of Ben's therapists & doctors either don't except Medicaid or their Medicaid roster is already full. And if we pass on the application at this time, and decide to reapply at a later date, it will most certainly be several more years before he is back at the top of the list. We are firmly stuck between a rock and a hard place.
No good deed goes unpunished......
I've been working at Duke for 10 years. For the past 2 years, I've worked 2 part time jobs on 2 different units. I work one evening shift per week on the ambulatory surgery unit. I also work 1 weekend night shift per week in the adult intensive care unit (MICU). So 20 hrs/week minimum. Both of these positions are "causal" positions which means I get a higher hourly salary but no benefits. In november I was informed by my manager that the MICU position had changed and that in order to keep my current hourly salary I must now work every weekend Sat & Sun(essentially, they've doubled the number of hours required) If I choose to con't to work only 1 weekend shift per week, my salary would be cut by $10-$15/hr (depending on if I work days or nights). This is despite the fact that I had no prior notice, my current contract has no expiration date, the contracts have never before been radically changed without grandfathering in the current employees. I explained to the director of nursing that if I could work every weekend, full time hours, I would sign on at Duke as a full time employee with full benefits. The most ironic thing is that my unit manager has said that she has no room for me on the schedule to work full time weekends. She uses me to cover empty slots but doesn't need me other than that. I am fighting to keep my current position as originally agreed upon. After all, Duke created the position, they offered it and I took it and have worked it consistently with no lapse in employment. I don't have a lot of hope but wish me luck.
Resolutions for 2008.....
Despite the current slump we're in, I resolve the following for 2008. To continue to make the best of each & every situation, good or bad. To work hard to make each day a good day for Ted, Ben & Grace. I promise I will not "come to terms with the situation" and I refuse to "accept things as they are".
And,as best as I can,I will try to bring love & laughter to my family and friends.
Ted and I want to thank you all again for your continued love and support. We're so grateful and we couldn't do it without you. We also sincerely wish you and yours all the best in the coming year.
Happy New Year! We hope it's a wonderful 2008!
A long and winding road.....
A week after my last post Ben had a seizure. He had a little head cold at the time, so we were disappointed but not too alarmed. The ten days later he had another. No illness this time. Since then, he has steadily increased his seizure activity. Currently, he's having one every 7-10 days. (Only 2 have been associated with illness) Pretty much the same seizure pattern he had pre-diet. There are several confounding factors. 1) DIET: Since his last visit to Johns Hopkins, we've increased his calories from 800 cal/day to 1200 cal/day. This increase happened over the course of a month. A friend of ours who has done the diet said that her son didn't have a 400cal increase the whole 2 years he was on the diet.The nutritionist increased his calories because of his acute hunger and weight loss. He dropped down from 39 lbs to 31 since starting the diet. Ben is much happier with this calorie amount and we've been able to work in different meal plans d/t the increased calories. He's only gained 0.5-1lb and even then that fluctuates. So I'm hoping JHH will let him stay on the current calorie count. 2)LIQUIDS: Ben was an emotional wreck most of Oct & Nov.Even sleeping in our bed most nights. I think it was d/t the withdrawal of depakote which is a mood stabilizer and that he suddenly became aware of his hunger when he was on 800 cal. So, Ted and I let him drink pretty much any amount he wanted. He's supposed to be restricted to 1200cc/day but since his ketones were consistently Large-XL we let him slide. When the seizures started again with regularity we tightened up his fluid intake and since then his ketones have been XL almost every night. (Unfortunately no improvement in seizures as yet) One side note. Ben has to drink sugar free,decaf drinks. Last week I accidentally made his tea with regular tea bags. Ben drank a whole days worth of caffeinated tea. WOW was he flying! Up 3 times in the night. Up for good @ 5am and no nap! But most amazing, he was in a great mood! Laughing & jumping around. More words & better stamina & behavior. He was so much fun to have around. His ketones did drop to Large but I'm going to ask on our next trip if he can have one caffeine drink a day. With his seizure activity, I'm sure they'll say no but it's worth asking. The difference was amazing! 3) MEDS: We've weaned the keppra off completely. The depakote was stoppped on Sept 30th and although Ben's mood was miserable, he didn't start having seizures until we started weaning the Zonegran. We got down to 1/2 a capsule twice a day & then they came back. At this point we've gone back up on the Zonegran to 1 capsule twice a day and added back the depakote at 1 capsule twice a day (the depakote was really restarted because Ted and I kept asking for it d/t Ben's irritability.) We started the depakote on a Tues night @ bedtime and the next morning we saw an improvement in mood. We got him dressed & out the door to school without complaint. We'd been dragging him crying all the way since the middle of Oct. Ben's mood continues to improve but we haven't seen an improvement in seizure control. Ted and I are really worried that the Doose diagnosis we got in July as well as the optimistic prognosis may be wrong. I've emailed the team but I'm having a hard time getting a response from them. They're taking 7-10 days to reply if I get a response at all. And usually it's a cursory response omitting several of my questions. When asked specifically about the Doose diagnosis & prognosis, I was told "some kids need to stay on the diet and medication". How much med? How long? Does this change the long term prognosis? I don't call them because I don't feel we're in crisis mode and I'm saving that card for when I really need it. But sometimes we really feel isolated. Especially when you realize that we're dealing not just with meds but with a medical diet. So when we don't get any answer for several days, we have to make a "best guess" with every meal and every snack. Not what I expected from world renowned JHH.
To Medicaid or not to Medicaid, that is the question....
In late Oct we got notice from the North Carolina Social services office that Ben was at the top of the list for the medicaid Cap DD/MR program. This is a federally funded program for children who have a wide range of developmental delay or are mentally retarded. The program provides funding for a variety of services. We applied for the program when Ben was a year old and have been on the waiting list ever since. So we were very excited when we got the news. Then the other shoe dropped! To say that the application process is complicated is grossly understated. First I had to go to the social services office in Hillsborough to apply.(I went in 8:30 am sharp, the Friday before Thanksgiving and the room was already packed) I'll spare you most of the colorful details of the lobby. The drunk man sitting next to me, the 2 pregnant teenagers waiting to apply for food stamps. The highlight was the vigorous debate between 3 ladies as to whether Thanksgiving was this Saturday or the next. One women kept asking what today's date was as if that would support her argument that Thanksgiving was next Saturday. After an hour, I finally was shown into an office, only to spend the next 20 mins trying to convince the case manager that I was in the right office and that Ben did qualify for Cap DD/MR. She kept asking for our household income,even though it has no bearing on his application. I kept repeating that I was there for Cap DD/MR and she kept saying she never heard of it. She then asked me was I there to place Ben in an institution! That's apparently what she did, and all she knew how to do. Finally she went out and asked her supervisor. She came back to tell me that I needed to see someone 2 doors down (in the same office) so back out to the waiting area I went. A colossal case of the left hand not knowing what the right hand is doing. When I finally spoke to the right person, she knew exactly what I was talking about and what I needed to do. Unfortunately that was as good as it got. I then found out that even though I have hundreds of papers from multiple therapists, & physicians, the social services office would need to evaluate Ben to determine what support he needs. Also, that I would have to go to the social security office (a different federal entity) in Durham and apply for disability. Ben would be turned down, we already knew that but it's a prerequisite and I had to apply anyway ( I shudder to think what my wait will be like in that lobby). I also found out that as part of the application process I had to sign a release that gives the federal government access to all of Ben's current and future finances so that they can recoup any funds spent on his care. If I don't sign the release, I can't even apply. To add insult to injury, no one could tell me what services Ben "might" receive and what the cost of the services might be. It was insane. Everyone kept saying that they couldn't tell me what he would qualify for until they had evaluated him (again, remember the fact that he's already receiving therapy 8 times a week. they still seem unable to give a best guess)I said I just want an overall list of services provided as well as a fee for service list. they acted like I wasn't speaking English. All I wanted to know was how much Ben would be charged so we could determine if it was worth applying. I didn't want everyone to go through a lengthy application process only to decline it later. The case manager also told me I would need to close Ben's college fund. (He's only four years old and already I have to decide between funding now vs a future possibility of Ben going to college. How depressing! What do I have a crystal ball! How parents can guess the college prospects of their "normal kids"?!). Also, once approved, there is a minimum amount of services Ben must use annually. It's not like a secondary insurance card to be used as a back up. Now the fun part really starts. After much investigating, on my own, I found out the following: Cap DD/MR will fund the following: Anything insurance pays for but after insurance pays, so basically our co-pay. It won't pay for anything insurance won't cover. So "no" to the dietician at JHH ($800-$1000), "no" for the meds he has to get from the compounding pharmacy ($85 for a bottle of tylenol & Ibuprofen). It also won't pay for PT, OT or speech because he's already getting them from school. Even though school is only open 9 months of the year (also closed on teacher work days, holidays and semester breaks,etc). It won't pay for the teacher's aide that goes with him to school ($10/hr). It will pay for assistive devices (Ben doesn't use or need any). It will pay for a babysitter for respite care but the sitter can't watch Grace, only Ben. (So,no help there) It will pay for a bus/van & driver for transportation but the driver can't give any rescue medication should Ben have a seizure. (So, no thank you) Finally, the multitude of Ben's therapists & doctors either don't except Medicaid or their Medicaid roster is already full. And if we pass on the application at this time, and decide to reapply at a later date, it will most certainly be several more years before he is back at the top of the list. We are firmly stuck between a rock and a hard place.
No good deed goes unpunished......
I've been working at Duke for 10 years. For the past 2 years, I've worked 2 part time jobs on 2 different units. I work one evening shift per week on the ambulatory surgery unit. I also work 1 weekend night shift per week in the adult intensive care unit (MICU). So 20 hrs/week minimum. Both of these positions are "causal" positions which means I get a higher hourly salary but no benefits. In november I was informed by my manager that the MICU position had changed and that in order to keep my current hourly salary I must now work every weekend Sat & Sun(essentially, they've doubled the number of hours required) If I choose to con't to work only 1 weekend shift per week, my salary would be cut by $10-$15/hr (depending on if I work days or nights). This is despite the fact that I had no prior notice, my current contract has no expiration date, the contracts have never before been radically changed without grandfathering in the current employees. I explained to the director of nursing that if I could work every weekend, full time hours, I would sign on at Duke as a full time employee with full benefits. The most ironic thing is that my unit manager has said that she has no room for me on the schedule to work full time weekends. She uses me to cover empty slots but doesn't need me other than that. I am fighting to keep my current position as originally agreed upon. After all, Duke created the position, they offered it and I took it and have worked it consistently with no lapse in employment. I don't have a lot of hope but wish me luck.
Resolutions for 2008.....
Despite the current slump we're in, I resolve the following for 2008. To continue to make the best of each & every situation, good or bad. To work hard to make each day a good day for Ted, Ben & Grace. I promise I will not "come to terms with the situation" and I refuse to "accept things as they are".
And,as best as I can,I will try to bring love & laughter to my family and friends.
Ted and I want to thank you all again for your continued love and support. We're so grateful and we couldn't do it without you. We also sincerely wish you and yours all the best in the coming year.
Happy New Year! We hope it's a wonderful 2008!
e mërkurë, 31 tetor 2007
Trick or Treat
TREAT
Ben remains seizure free and he continues to improve a little each day. Last week, I took him to therapy and felt confident enough to leave him there & run an errand. It was an amazing moment b/c I've been taking him to therapy at Emerge since he was 9 mos old. And in all that time, I have never been able to leave him there. I wait in the waiting room even though he's in therapy for an hour and a half. Last week I was desperate for a cup of coffee and I needed a birthday present. There is a book store right next door. So I thought I should be strong and make a run for it. I was nervous the whole time I was gone b/c even though I trust the staff @ Emerge completely, I took the diastat with me. So if he did have a seizure, he'd be stuck until I got back to him. The entire time I was gone (20-25 mins) I kept waiting for a phone call.
But, all went well. No seizure, I got some shopping done and a cafe latte to celebrate. It was a small step. Commonplace for most moms but a huge event for me.
TRICK
Ben's mood has also gotten better since his calories have increased. However he's still very emotional. We can't get him to sleep alone at night. He fights us going to bed and once he's asleep, if he's sleeping alone, he wakes up crying about 4am and we can't get him back to bed. So, he's been sleeping with one of us every night for the past 3 weeks. He's also having a hard time transitioning between activities & locations. And he cries any time anyone leaves. His teachers say that he does this at school when anyone leaves the classroom. Even though the Drs @ John's Hopkins don't think it's depakote withdrawal, I do think it's somehow related. It all started once we stopped the med. It's almost as if Ben is feeling very insecure and now that he's so alert, he's a little overwhelmed by life.
TREAT
We emailed the JHH Drs & gave them an update since we've been home. The dietitian
increased his calories again & he's now up to a total of 1075 per day. We also expect to get the go ahead to stop his final seizure med.
TRICK
Ben is so skinny it's amazing. He got too tall for his 3T pants so I bought him some new pants. All 4T. They fit in the length but are way too big (when he walks they fall down). Luckily my friend Dina can sew and will be able to add draw strings.
TREAT
My friends are so awesome. A bunch of them came over on a Sunday and cooked up a ton of Ben's favorite Keto foods. It was a great afternoon spent cooking & catching up. And I now have a freezer jammed with Keto food. It's made my life so much easier.
If I'm running late in the morning or rushing home with the kids for lunch and need to change to go to work, I just grab something out of the freezer. A major help and convenient (which is not normally something you have on the diet).
TRICK or TREAT
Ted & I took Ben & Grace trick or treating tonight. We debated going (we weren't sure how Ben would handle it)but decided at the last minute to give it a try. Ben was dressed as a king, Grace was a hobo (not an indication of my opinion of them, I bought the King & hobo costumes last year on clearance and they were the cutest ones left). They both looked adorable. Ben really didn't care about the candy. He just had a good time getting pushed around in the stroller and looking at all the sights. He's doing much better walking but in the dark, I think he would've struggled. And even though his stamina has improved, he still fatigues faster than his peers b/c of the low calories & we did a lot of walking up & down hills.
Grace on the other hand figured it out immediately and was all about the candy! She marched up to each door and pushed her way to the head of the line. Even though she was the littlest. On the sly, Ted and I were pulling the candy out of her bucket and giving it to the other kids. She caught on though. She realized that each time she went to the door, she'd get candy but that somehow, in between houses, her candy would disappear. She refused to give us her bucket after awhile and was trying desperately to eat the candy as fast as she could. Wrapper & all!
Happy Halloween to everyone.
I hope that all the ghosts and goblins who come to your door tonight are the 4 ft tall and living & breathing kind!
Ben remains seizure free and he continues to improve a little each day. Last week, I took him to therapy and felt confident enough to leave him there & run an errand. It was an amazing moment b/c I've been taking him to therapy at Emerge since he was 9 mos old. And in all that time, I have never been able to leave him there. I wait in the waiting room even though he's in therapy for an hour and a half. Last week I was desperate for a cup of coffee and I needed a birthday present. There is a book store right next door. So I thought I should be strong and make a run for it. I was nervous the whole time I was gone b/c even though I trust the staff @ Emerge completely, I took the diastat with me. So if he did have a seizure, he'd be stuck until I got back to him. The entire time I was gone (20-25 mins) I kept waiting for a phone call.
But, all went well. No seizure, I got some shopping done and a cafe latte to celebrate. It was a small step. Commonplace for most moms but a huge event for me.
TRICK
Ben's mood has also gotten better since his calories have increased. However he's still very emotional. We can't get him to sleep alone at night. He fights us going to bed and once he's asleep, if he's sleeping alone, he wakes up crying about 4am and we can't get him back to bed. So, he's been sleeping with one of us every night for the past 3 weeks. He's also having a hard time transitioning between activities & locations. And he cries any time anyone leaves. His teachers say that he does this at school when anyone leaves the classroom. Even though the Drs @ John's Hopkins don't think it's depakote withdrawal, I do think it's somehow related. It all started once we stopped the med. It's almost as if Ben is feeling very insecure and now that he's so alert, he's a little overwhelmed by life.
TREAT
We emailed the JHH Drs & gave them an update since we've been home. The dietitian
increased his calories again & he's now up to a total of 1075 per day. We also expect to get the go ahead to stop his final seizure med.
TRICK
Ben is so skinny it's amazing. He got too tall for his 3T pants so I bought him some new pants. All 4T. They fit in the length but are way too big (when he walks they fall down). Luckily my friend Dina can sew and will be able to add draw strings.
TREAT
My friends are so awesome. A bunch of them came over on a Sunday and cooked up a ton of Ben's favorite Keto foods. It was a great afternoon spent cooking & catching up. And I now have a freezer jammed with Keto food. It's made my life so much easier.
If I'm running late in the morning or rushing home with the kids for lunch and need to change to go to work, I just grab something out of the freezer. A major help and convenient (which is not normally something you have on the diet).
TRICK or TREAT
Ted & I took Ben & Grace trick or treating tonight. We debated going (we weren't sure how Ben would handle it)but decided at the last minute to give it a try. Ben was dressed as a king, Grace was a hobo (not an indication of my opinion of them, I bought the King & hobo costumes last year on clearance and they were the cutest ones left). They both looked adorable. Ben really didn't care about the candy. He just had a good time getting pushed around in the stroller and looking at all the sights. He's doing much better walking but in the dark, I think he would've struggled. And even though his stamina has improved, he still fatigues faster than his peers b/c of the low calories & we did a lot of walking up & down hills.
Grace on the other hand figured it out immediately and was all about the candy! She marched up to each door and pushed her way to the head of the line. Even though she was the littlest. On the sly, Ted and I were pulling the candy out of her bucket and giving it to the other kids. She caught on though. She realized that each time she went to the door, she'd get candy but that somehow, in between houses, her candy would disappear. She refused to give us her bucket after awhile and was trying desperately to eat the candy as fast as she could. Wrapper & all!
Happy Halloween to everyone.
I hope that all the ghosts and goblins who come to your door tonight are the 4 ft tall and living & breathing kind!
e enjte, 18 tetor 2007
Be careful what you wish for.....
It's been a real roller coaster ride since my last posting. Ted and I were so anxious to stop Ben's next seizure med. Once we stopped it, Ben would only be on one low dose seizure med. It took 3 weeks but we finally stopped the Depakote at the end of Sept. Yeah!! And still no seizures, Bigger YEAH!!!
And then psychotic Ben showed up....
Five days after the depakote stopped, Ben started having trouble sleeping and was refusing to take his afternoon nap. We thought this was a good thing b/c maybe it meant more energy. Then Ben became increasingly more irritable & emotional and was having sudden crying jags. Ted and I thought Ben might be having Depakote withdrawal or at least that he was unable to cope without the sedative effects of the depakote. (Depakote is a mood stabilizer and is used to treat mania. Ben has been on it since he was a year old so this is a major transition). We even considered restarting the depakote just one tab a day. I called my cousin who is a pharmacist to get his opinion on the withdrawal theory. He said he thought it was too far out for withdrawal symptoms & he didn't recommend resuming the depakote.
Because we had an appointment @ Johns Hopkins this past Tues, we were just trying to ride it out. Last weekend Ben had spent 2 solid days crying and had lost his voice. We could not comfort him and the only way he would sleep is if Ted slept with him. And even then he slept very little. Finally last Sunday morning after another sleepless night Ted called the Johns Hopkins on call resident & they prescribed Ativan. Believe it or not, it really didn't help. So finally it was time to go to JHH. We drove him to Baltimore on Monday night, crying all the way. We made desperation stops at fast food places so that they could heat up Ben's meals (Wendy's & Arby's were great & didn't hesitate to help) and also just to have a chance to get out of the car & away from the crying. Grace was with us & the poor girl couldn't figure out what was going on. She kept looking over at Ben trying to figure out the problem. But god bless Grace, she kept her cool & didn't give us any trouble. She just went along for the ride.
Once we got him to he clinic on Tues, the Drs said it was all hunger. Nothing to do with the Depakote except that he may now be more aware of how hungry he is. Ben just needed more calories. They gave him one more snack per day & increased his meals by a whopping 25 calories. So he went from 800 cal/day to 975. It didn't seem like much and I was very skeptical that hunger was the only problem. He's been on the diet for 3 mos, had not really c/o hunger, in fact he has refused alot of the foods. And this emotional meltdown only started two weeks ago.
While we were in the clinic we saw 2 of the other families who started the program with us(and I had an email waiting for me when I got home from the other mom. There are 4 families total). Great news is that all of us are still on the diet. And everyone has had improvement in their seizure control. We found out that a couple of the kids have had weight gains and have had to decrease their calories.I think Ben is the only one who has been completely seizure free. So I guess even though these past 2 weeks have been very upsetting, I'd rather add to the diet than have to take away.
We got back from JHH on Tues afternoon and things started to improve almost immediately. I can't believe that such a small calorie increase has made such a big difference but it's really helped. Ben is still hungry and he follows me around in the kitchen alot but he's not constantly crying inconsolably. He usually is asking for food 1-2 hrs after eating but it's right about time for food anyway so there's not too much of a delay. He is definitely very alert and aware now of what foods are around him & what everyone else is eating. He has had 3 attempts this week to swipe food. Each time he was stopped he had a short meltdown but we were able to get him out of it. I guess this is a good thing b/c I think the 3 previous months he was too foggy mentally to be acutely aware of his surroundings. He also probably wasn't as perceptive about having an empty tummy. Back then he really only cried when I made him eat foods he didn't like or when he came across food favorites (pizza, cake etc). Otherise he wasn't really food seeking. Looks like that's changing. It's a good thing we have a safety lock on the freezer & may need one for the refrig.
Another good thing is that we have consistently been able to find new favorite keto foods for Ben. And my friends and family have been a huge help keeping me stocked up. My mom was down at the end of Sept & we made up & froze at least 40 meals. We also created a few new favorites. (Chicken noodle soup & macadamia nut cookies).
Macadamia nuts are a major staple in Ben's diet. He eats 2 a day as a "free" food. (I know, big deal. But we put them in a little bowl or cup and make a HUGE deal over them. So he thinks he's getting a big snack) And they are also ground up & used as a base in a lot of the cookie & sweet treat receipies. Luckily our family friends, Steve & Jane Haky, are currently living in Hawaii & have been able to ship us some. (The retail price is insane!) We're also having our first "Keto cooking party". A bunch of my girlfriends are coming over tomorrow and we're going to cook up alot of Ben's favorite meals and freeze them. I am providing lunch (non-keto food of course) & libation. I think it'll be alot of fun. It'll be a great way to share the work & have some social time. I know it'll be a huge help to me.
Once again, I am so grateful for the help & support from friends & family.
It lightens the load & keeps me sane.
All the best to you and yours.
And then psychotic Ben showed up....
Five days after the depakote stopped, Ben started having trouble sleeping and was refusing to take his afternoon nap. We thought this was a good thing b/c maybe it meant more energy. Then Ben became increasingly more irritable & emotional and was having sudden crying jags. Ted and I thought Ben might be having Depakote withdrawal or at least that he was unable to cope without the sedative effects of the depakote. (Depakote is a mood stabilizer and is used to treat mania. Ben has been on it since he was a year old so this is a major transition). We even considered restarting the depakote just one tab a day. I called my cousin who is a pharmacist to get his opinion on the withdrawal theory. He said he thought it was too far out for withdrawal symptoms & he didn't recommend resuming the depakote.
Because we had an appointment @ Johns Hopkins this past Tues, we were just trying to ride it out. Last weekend Ben had spent 2 solid days crying and had lost his voice. We could not comfort him and the only way he would sleep is if Ted slept with him. And even then he slept very little. Finally last Sunday morning after another sleepless night Ted called the Johns Hopkins on call resident & they prescribed Ativan. Believe it or not, it really didn't help. So finally it was time to go to JHH. We drove him to Baltimore on Monday night, crying all the way. We made desperation stops at fast food places so that they could heat up Ben's meals (Wendy's & Arby's were great & didn't hesitate to help) and also just to have a chance to get out of the car & away from the crying. Grace was with us & the poor girl couldn't figure out what was going on. She kept looking over at Ben trying to figure out the problem. But god bless Grace, she kept her cool & didn't give us any trouble. She just went along for the ride.
Once we got him to he clinic on Tues, the Drs said it was all hunger. Nothing to do with the Depakote except that he may now be more aware of how hungry he is. Ben just needed more calories. They gave him one more snack per day & increased his meals by a whopping 25 calories. So he went from 800 cal/day to 975. It didn't seem like much and I was very skeptical that hunger was the only problem. He's been on the diet for 3 mos, had not really c/o hunger, in fact he has refused alot of the foods. And this emotional meltdown only started two weeks ago.
While we were in the clinic we saw 2 of the other families who started the program with us(and I had an email waiting for me when I got home from the other mom. There are 4 families total). Great news is that all of us are still on the diet. And everyone has had improvement in their seizure control. We found out that a couple of the kids have had weight gains and have had to decrease their calories.I think Ben is the only one who has been completely seizure free. So I guess even though these past 2 weeks have been very upsetting, I'd rather add to the diet than have to take away.
We got back from JHH on Tues afternoon and things started to improve almost immediately. I can't believe that such a small calorie increase has made such a big difference but it's really helped. Ben is still hungry and he follows me around in the kitchen alot but he's not constantly crying inconsolably. He usually is asking for food 1-2 hrs after eating but it's right about time for food anyway so there's not too much of a delay. He is definitely very alert and aware now of what foods are around him & what everyone else is eating. He has had 3 attempts this week to swipe food. Each time he was stopped he had a short meltdown but we were able to get him out of it. I guess this is a good thing b/c I think the 3 previous months he was too foggy mentally to be acutely aware of his surroundings. He also probably wasn't as perceptive about having an empty tummy. Back then he really only cried when I made him eat foods he didn't like or when he came across food favorites (pizza, cake etc). Otherise he wasn't really food seeking. Looks like that's changing. It's a good thing we have a safety lock on the freezer & may need one for the refrig.
Another good thing is that we have consistently been able to find new favorite keto foods for Ben. And my friends and family have been a huge help keeping me stocked up. My mom was down at the end of Sept & we made up & froze at least 40 meals. We also created a few new favorites. (Chicken noodle soup & macadamia nut cookies).
Macadamia nuts are a major staple in Ben's diet. He eats 2 a day as a "free" food. (I know, big deal. But we put them in a little bowl or cup and make a HUGE deal over them. So he thinks he's getting a big snack) And they are also ground up & used as a base in a lot of the cookie & sweet treat receipies. Luckily our family friends, Steve & Jane Haky, are currently living in Hawaii & have been able to ship us some. (The retail price is insane!) We're also having our first "Keto cooking party". A bunch of my girlfriends are coming over tomorrow and we're going to cook up alot of Ben's favorite meals and freeze them. I am providing lunch (non-keto food of course) & libation. I think it'll be alot of fun. It'll be a great way to share the work & have some social time. I know it'll be a huge help to me.
Once again, I am so grateful for the help & support from friends & family.
It lightens the load & keeps me sane.
All the best to you and yours.
e hënë, 17 shtator 2007
If I keep running this fast, I'm going to catch up with my future self !
I'm sorry it's taken me so long to write. Ben & Grace both started pre-school this month (Ben goes 3 mornings a week & Grace goes 2, of course they don't go on the same days so still no alone time for mom). I've also been working 32-48 hrs a week, rotating shifts. I only planned on working 20 hrs a week but recently I've had a lot of requests from staff & co-workers for coverage. And, because I'm a casual staffer, I have a terrible habit of thinking, "I better take the extra time when I can".
This tendency combined with our expenses makes me over book myself. Each time I'm in the middle of a work stretch I swear I won't do it again. That promise usually lasts till the next schedule.
School Daze.....
Ben started pre-K @ our local public school. All is well. I was able to find two really sweet UNC students to go with him. Jordan & Reecie. Even though the school has staff in the classroom and a full time nurse, I offered to hire someone as a teachers aide to off-set any extra time Ben may take from the teachers. Ben spends part of his morning in the Headstart class and part in the special ed class room, so I thought another classroom aide could help him transition. Finally b/c Ben can't eat any food when he's @ school, except what he brings, I thought the girls could help keep Ben from cheating. Especially if there's a birthday party or class treat.
Ben is doing really well and generally enjoys being there. I think the teachers, therapists and IEP coordinator have done a great job coming up with an individualized education plan for Ben and they are sticking to it. Just this week, they decided to break the larger class into two different recess groups b/c they felt that the smaller kids with more more needs would benefit from their own playground time. I'm sure Ben was getting creamed out there with the stronger, faster kids.
We've really seen an improvement in Ben's speech. He has even more new words and he's using "-ing", "-ed", and pronouns. Every week we see improvements that are subtle and yet profound(if that makes sense). Recently, Ben kept getting of bed when he should have been asleep. When Ted went down the hall, Ben heard him coming, he shut the door,jumped back in bed & covered up. When Ted opened the door & said "Ben stay in bed", Ben sat up and said "What?!" As in "What, I didn't do anything!" Where did that come from? I don't think he learned it from his speech therapist.
With his speech, he still mostly speaks in babble but now he sometimes will continue a conversation thread. He'll say something, we'll answer and then he'll say another follow up word that's either a question or another word related to the same subject. It's a conversation Ben McD style. Ironically, as his speech/vocabulary has improved, he sometimes has an even harder time talking. In the past, Ben mostly talked in babble, on and on and on. If you were lucky you'd get 1 or 2 words in the whole string that you could understand. Now that Ben has more words & a better understanding of language, I've noticed that he says "umm" and that he can get really stuck. I think he's trying to find the right word instead of just babbling on b/c now he understands that the words matter. What I've always wanted to know is, when he babbles on in gibberish for 10-15mins straight, did he think we understood him or did he know we didn't but didn't care & babbled on anyway. (Maybe his maternal grandmother can give us an answer to that one! Ha, Ha Grammy!)
Weebles Wooble but they don't fall down.....
We've also seen major improvement with Ben's coordination, balance & stamina. Ben has been off Keppra for over a month & he is now almost off Depakote. Saturday 9/29 will be his last dose. We're so excited and it's really amazing b/c Ben has been on Depakote almost continuously since he was 9 mos old. Like Keppra, Depakote causes major balance & coordination problems. As well as fatigue & irritability. As his dose has decreased,Ben's coordination has improved. I wouldn't compare him to Fred Astaire and he's still not "normal" but to me, his coordination has so improved, he's almost graceful. This past week, Ted saw Ben run back from the TV to the couch and in one smooth movement, without stopping, he stood on one foot,bent up his knee & flung himself on to the couch. Not a very big deal to most kids. In fact I'm sure they do the same thing dozens of times a day, but for Ben it's a very big deal. Before now, he could never have done it with his poor balance & coordination. In fact his motor planning is so bad, I don't think he could've figured out how to do it. He normally walks stiffly over to the couch,holds on with both hands & puts one knee up and then the other. Very stilted & deliberate movements.
I had a nice moment with Ben yesterday. I ran some errands and had to stop in 3 stores in the same shopping center. Ben was with me and I parked the car & he walked with me holding my hand the whole time. From store to store and in & out of each one of them. He never tripped, stumbled or whined b/c he was tired and wanted to be picked up.It was so enjoyable to walk along holding his hand. Something so mundane and taken for granted by most moms but it was an amazing moment for me. Ben has always had such a hard time walking, I usually end up carrying him. In fact at times I've had some glances from other moms wondering why I'm carrying such a big kid. It was just easier & faster. (And I have been know to carry both Ben & Grace at the same time! Who needs a home gym?!) Walking with him yesterday was so easy,so uneventful and so much fun!
Have you called Jenny yet?.....
The diet continues. Ben is doing well with some foods (peanut butter balls still rule) and his 3 new favorites are spaghetti, red sauce or butter (made with squash) & macaroni & cheese, made with zucchini. None of them are big portion sizes but Ben really,likes them. In fact he'll sit & eat the red sauce spaghetti & pay no attention to what we're eating. We're on the search for new protein options. Ben has sworn off cheese sticks, hot dogs & salad with mayo (who can blame him after eating it for 3 months!) He doesn't like bacon, tuna, eggs, chicken,ham or turkey. So we're pretty much only have ground beef & pepperoni to try at this point. We'll give it a shot then start over with the reject list. Failure is not an option.
We do have difficult moments. We had a surprise b-day party for Ted a little while ago & the group ordered pizza (Ben's favorite). I had parked him in the basement family room watching Sesame street so he missed most of it. But at one point he came upstairs and ran off with the pizza box. Luckily it was empty. Then later when we had birthday cake, he cried. I try not to dwell on those moments too much. I just think about the big picture and the hope for a better future for Ben. Bottom line is that because of the diet Ben will soon be on only one seizure med (Zonegran & it's a very low dose). He's only had one seizure since he started the diet on July 9th and that was when he was sick. So his future is looking really bright.
Keeping the faith....
Since Ben has come into our lives, Ted and I have really tried to keep the faith & focus on the positive things in life (Sometimes are easier than others & Ted is better at it than I am. He doesn't have the worry gene). With all the ups and downs life brings us, we try to stay strong and celebrate even the smallest joys.
Thanks to all of you for helping us to do that. We could never do it without you.
We can't solve anyone's problem but our own. That's how it's supposed to be. We can only be there in love while others solve their own problems.
-T.C. Whittaker
This tendency combined with our expenses makes me over book myself. Each time I'm in the middle of a work stretch I swear I won't do it again. That promise usually lasts till the next schedule.
School Daze.....
Ben started pre-K @ our local public school. All is well. I was able to find two really sweet UNC students to go with him. Jordan & Reecie. Even though the school has staff in the classroom and a full time nurse, I offered to hire someone as a teachers aide to off-set any extra time Ben may take from the teachers. Ben spends part of his morning in the Headstart class and part in the special ed class room, so I thought another classroom aide could help him transition. Finally b/c Ben can't eat any food when he's @ school, except what he brings, I thought the girls could help keep Ben from cheating. Especially if there's a birthday party or class treat.
Ben is doing really well and generally enjoys being there. I think the teachers, therapists and IEP coordinator have done a great job coming up with an individualized education plan for Ben and they are sticking to it. Just this week, they decided to break the larger class into two different recess groups b/c they felt that the smaller kids with more more needs would benefit from their own playground time. I'm sure Ben was getting creamed out there with the stronger, faster kids.
We've really seen an improvement in Ben's speech. He has even more new words and he's using "-ing", "-ed", and pronouns. Every week we see improvements that are subtle and yet profound(if that makes sense). Recently, Ben kept getting of bed when he should have been asleep. When Ted went down the hall, Ben heard him coming, he shut the door,jumped back in bed & covered up. When Ted opened the door & said "Ben stay in bed", Ben sat up and said "What?!" As in "What, I didn't do anything!" Where did that come from? I don't think he learned it from his speech therapist.
With his speech, he still mostly speaks in babble but now he sometimes will continue a conversation thread. He'll say something, we'll answer and then he'll say another follow up word that's either a question or another word related to the same subject. It's a conversation Ben McD style. Ironically, as his speech/vocabulary has improved, he sometimes has an even harder time talking. In the past, Ben mostly talked in babble, on and on and on. If you were lucky you'd get 1 or 2 words in the whole string that you could understand. Now that Ben has more words & a better understanding of language, I've noticed that he says "umm" and that he can get really stuck. I think he's trying to find the right word instead of just babbling on b/c now he understands that the words matter. What I've always wanted to know is, when he babbles on in gibberish for 10-15mins straight, did he think we understood him or did he know we didn't but didn't care & babbled on anyway. (Maybe his maternal grandmother can give us an answer to that one! Ha, Ha Grammy!)
Weebles Wooble but they don't fall down.....
We've also seen major improvement with Ben's coordination, balance & stamina. Ben has been off Keppra for over a month & he is now almost off Depakote. Saturday 9/29 will be his last dose. We're so excited and it's really amazing b/c Ben has been on Depakote almost continuously since he was 9 mos old. Like Keppra, Depakote causes major balance & coordination problems. As well as fatigue & irritability. As his dose has decreased,Ben's coordination has improved. I wouldn't compare him to Fred Astaire and he's still not "normal" but to me, his coordination has so improved, he's almost graceful. This past week, Ted saw Ben run back from the TV to the couch and in one smooth movement, without stopping, he stood on one foot,bent up his knee & flung himself on to the couch. Not a very big deal to most kids. In fact I'm sure they do the same thing dozens of times a day, but for Ben it's a very big deal. Before now, he could never have done it with his poor balance & coordination. In fact his motor planning is so bad, I don't think he could've figured out how to do it. He normally walks stiffly over to the couch,holds on with both hands & puts one knee up and then the other. Very stilted & deliberate movements.
I had a nice moment with Ben yesterday. I ran some errands and had to stop in 3 stores in the same shopping center. Ben was with me and I parked the car & he walked with me holding my hand the whole time. From store to store and in & out of each one of them. He never tripped, stumbled or whined b/c he was tired and wanted to be picked up.It was so enjoyable to walk along holding his hand. Something so mundane and taken for granted by most moms but it was an amazing moment for me. Ben has always had such a hard time walking, I usually end up carrying him. In fact at times I've had some glances from other moms wondering why I'm carrying such a big kid. It was just easier & faster. (And I have been know to carry both Ben & Grace at the same time! Who needs a home gym?!) Walking with him yesterday was so easy,so uneventful and so much fun!
Have you called Jenny yet?.....
The diet continues. Ben is doing well with some foods (peanut butter balls still rule) and his 3 new favorites are spaghetti, red sauce or butter (made with squash) & macaroni & cheese, made with zucchini. None of them are big portion sizes but Ben really,likes them. In fact he'll sit & eat the red sauce spaghetti & pay no attention to what we're eating. We're on the search for new protein options. Ben has sworn off cheese sticks, hot dogs & salad with mayo (who can blame him after eating it for 3 months!) He doesn't like bacon, tuna, eggs, chicken,ham or turkey. So we're pretty much only have ground beef & pepperoni to try at this point. We'll give it a shot then start over with the reject list. Failure is not an option.
We do have difficult moments. We had a surprise b-day party for Ted a little while ago & the group ordered pizza (Ben's favorite). I had parked him in the basement family room watching Sesame street so he missed most of it. But at one point he came upstairs and ran off with the pizza box. Luckily it was empty. Then later when we had birthday cake, he cried. I try not to dwell on those moments too much. I just think about the big picture and the hope for a better future for Ben. Bottom line is that because of the diet Ben will soon be on only one seizure med (Zonegran & it's a very low dose). He's only had one seizure since he started the diet on July 9th and that was when he was sick. So his future is looking really bright.
Keeping the faith....
Since Ben has come into our lives, Ted and I have really tried to keep the faith & focus on the positive things in life (Sometimes are easier than others & Ted is better at it than I am. He doesn't have the worry gene). With all the ups and downs life brings us, we try to stay strong and celebrate even the smallest joys.
Thanks to all of you for helping us to do that. We could never do it without you.
We can't solve anyone's problem but our own. That's how it's supposed to be. We can only be there in love while others solve their own problems.
-T.C. Whittaker
e martë, 28 gusht 2007
Sadly, the streak is broken......
Sad to say, just a few days after my last post, Ben had a seizure. It was another large seizure requiring Diastat but it broke almost immediately after I gave the medication. So it seems that the diet has not only reduced the number of the seizures but it may be helping to minimize the severity of the seizures as well. (I'm not sure about that and will definitely ask the Dr's next time we're at JHH).
We had made almost 5 weeks since his last seizure which is the longest Ben was seizure free in over a year. He was sick with a major sinus & ear infection and was having pretty high temps. So, although Ted and I were disappointed, we weren't surprised. We knew that Ben would probably continue to have illness related seizures. In fact Ted and I were more discouraged that Ben was sick already. He hadn't even started school yet and hadn't really been exposed to anyone so his illness was as big a shock as the seizure.
Since then, Ben has recovered from his infection and is doing really well. We were able to continue to wean his Keppra and have finally gotten off the med YEAH! It's a nasty med with miserable side effects so we're very happy to get rid of it. Ben's balance improved significantly since the med stopped and he has continued to improve his vocabulary. He's still speaking in 1-2 word sentences (mostly 1 word) but he's added quite a few more new words. He's latest fad is to bend up his arm and say muscle except he says "musk-cal". It's pretty funny. I don't know where he got it. I'm worried that he's been channel surfing from Sesame Street to WWF!
The diet has been going fairly well. We're still having our battles (mostly in the poultry food group, who hates chicken! it's so bland how can it be offensive ? but Ben hates it!). We've figured out a few favorites (peanut butter balls rule!), we've also found a great "keto mac & cheese" recipe. It's made with zucchini and it ends up being a fairly large portion. Ben really likes it so it's a winner all around. Ben also likes the keto pancakes & waffles but they are a major pain to make. Very time consuming. My friends have been helping with keto cooking sessions. They come over and we cook up batches of some of Ben's favorites. It's been a huge help to me and it makes the cooking a lot of fun. It also gives me a chance to catch up with my friends.
Ben will start school next week. Just 3 mornings a week but he'll be at his local grade school so he'll be close to the house. And he'll have all 3 of his therapists there plus 2 teachers and the school nurse. I've hired 2 UNC students to go with him. I offered this to the school and they agreed to the plan.The students will act a a teachers aide for the whole class but will assist Ben when he needs help and when he needs to go to another classroom. They'll also keep an eye on him to make sure he gets his morning snack & that he's not eating anything else. Ted and I are very glad that Ben is starting pre-school. He is pretty delayed academically and we're hopeful that once he is off the rest of his meds, he may be able to learn a lot.
I'm always amazed at the number of people who have come into Ben's life to help him. I've started writing down the names of all the people who have helped Ben at one time or another. It's wonderful to look at and it makes you realize that your not alone. I'm sure one day I'll show it to Ben.
The list is really long and I haven't even included family and friends. With the start of school, Ben's "helper" list has added 2 more teachers, 3 more therapists (plus the two who already see him) 3 UNC students, and one school nurse. Not to forget the folks who are already taking care of him (1 dietitian, 2 pharmacists (1 regular, 1 compounding), 2 eye Dr's, 4 neurologists, 1 ENT Dr, 1 pediatrician and 1 social worker). They are a group of dedicated and generous people. They've helped Ben so much and continue to improve his life and his future in many ways.
Ted and I know this and consider ourselves very blessed.
Best wishes to you and yours as you start the school year
A hundred years from now
It will not matter
What my bank account was,
The sort of house I lived in
Or the kind of car I drove
But the world may be different
Because I was important
In the life of a child
We had made almost 5 weeks since his last seizure which is the longest Ben was seizure free in over a year. He was sick with a major sinus & ear infection and was having pretty high temps. So, although Ted and I were disappointed, we weren't surprised. We knew that Ben would probably continue to have illness related seizures. In fact Ted and I were more discouraged that Ben was sick already. He hadn't even started school yet and hadn't really been exposed to anyone so his illness was as big a shock as the seizure.
Since then, Ben has recovered from his infection and is doing really well. We were able to continue to wean his Keppra and have finally gotten off the med YEAH! It's a nasty med with miserable side effects so we're very happy to get rid of it. Ben's balance improved significantly since the med stopped and he has continued to improve his vocabulary. He's still speaking in 1-2 word sentences (mostly 1 word) but he's added quite a few more new words. He's latest fad is to bend up his arm and say muscle except he says "musk-cal". It's pretty funny. I don't know where he got it. I'm worried that he's been channel surfing from Sesame Street to WWF!
The diet has been going fairly well. We're still having our battles (mostly in the poultry food group, who hates chicken! it's so bland how can it be offensive ? but Ben hates it!). We've figured out a few favorites (peanut butter balls rule!), we've also found a great "keto mac & cheese" recipe. It's made with zucchini and it ends up being a fairly large portion. Ben really likes it so it's a winner all around. Ben also likes the keto pancakes & waffles but they are a major pain to make. Very time consuming. My friends have been helping with keto cooking sessions. They come over and we cook up batches of some of Ben's favorites. It's been a huge help to me and it makes the cooking a lot of fun. It also gives me a chance to catch up with my friends.
Ben will start school next week. Just 3 mornings a week but he'll be at his local grade school so he'll be close to the house. And he'll have all 3 of his therapists there plus 2 teachers and the school nurse. I've hired 2 UNC students to go with him. I offered this to the school and they agreed to the plan.The students will act a a teachers aide for the whole class but will assist Ben when he needs help and when he needs to go to another classroom. They'll also keep an eye on him to make sure he gets his morning snack & that he's not eating anything else. Ted and I are very glad that Ben is starting pre-school. He is pretty delayed academically and we're hopeful that once he is off the rest of his meds, he may be able to learn a lot.
I'm always amazed at the number of people who have come into Ben's life to help him. I've started writing down the names of all the people who have helped Ben at one time or another. It's wonderful to look at and it makes you realize that your not alone. I'm sure one day I'll show it to Ben.
The list is really long and I haven't even included family and friends. With the start of school, Ben's "helper" list has added 2 more teachers, 3 more therapists (plus the two who already see him) 3 UNC students, and one school nurse. Not to forget the folks who are already taking care of him (1 dietitian, 2 pharmacists (1 regular, 1 compounding), 2 eye Dr's, 4 neurologists, 1 ENT Dr, 1 pediatrician and 1 social worker). They are a group of dedicated and generous people. They've helped Ben so much and continue to improve his life and his future in many ways.
Ted and I know this and consider ourselves very blessed.
Best wishes to you and yours as you start the school year
A hundred years from now
It will not matter
What my bank account was,
The sort of house I lived in
Or the kind of car I drove
But the world may be different
Because I was important
In the life of a child
e shtunë, 11 gusht 2007
Happy Anniversary !
Congratulations to Ben (and us), we made it through our first month on the diet! It's been so hectic, weighing food & cooking meals, the days have gone really fast but the past 30 days have also seemed like a lifetime. Ben is doing really well. He's still seizure free and we're thrilled. In the past year, the longest time he's ever gone without a seizure was three weeks, so we are now in uncharted territory. It's amazing and sometimes a little scary. In the past,trips to Costco have usually resulted in a seizure (believe it or not). I think he has inherited his dad's aversion to shopping. Today we went and we had no problem, not even anything remotely weird on Ben's part. We have also gotten into the habit of checking on Ben if he falls asleep when we're driving in the minivan (especially if it's dark). It's always hard to know if he's asleep or if he's having a seizure. Now it's a little less scary driving with him b/c chances are, he's just asleep.
Some things are still a little tough. Ben has had quite a few days when he's really hungry. We had some friends over to swim this week and Ben whined alot b/c they brought food and he was still really hungry after dinner. I keep trying to get him to drink fruit flavored water or calorie & caffeine free soda to help curb his appetite but he really doesn't like it. I also bought a machine to make him shaved ice (alot like snow cones only smoother). He doesn't like the shaved ice either, it's to cold, but I'm not giving up yet. I have to find something else that will work as a snack & help with the hunger.
I've also realized that I've been depriving Grace. Since we started the diet, we haven't been eating any bread, bananas or crackers (all Ben's favorites). Last week, out of desperation, I made a half a PB&J sandwich for Grace. She was so thrilled, she hummed while she ate it & her hands were shaking as she stuffed the whole thing in her mouth. She choked it down & immediately asked for more. I felt so bad, the next morning I gave her a banana. She tried to stuff the whole thing in her mouth and she ended up eating 3 whole bananas for breakfast! (I hope this is just a phase or we'll be entering her in competitive eating competitions!)
We have hooked up with a compounding pharmacy. They will have to make any meds Ben may need if he gets sick (e.g. carbohydrate free antibiotics, allergy meds, motrin). They are a very small,very funky little pharmacy (only 4 staff members and no cash register!) But they are really thorough and go the extra mile (the pharmacist figured out a way to flavor Ben's Motrin & benadryl without adding carbs). The kicker is the expense. $85 for 2 small bottles of Motrin & benadryl. Something most folks get to pick up at any drug store or grocery. And, since they are not perscriptions, I don't think we'll be reimbursed by insurance. To add insult to injury, because they are"custom made" & not commercially manufactured, they expire in 8 weeks, 12 weeks tops! Oh well, the good news is that we are weaning Ben off his Keppra. It should take about 3 weeks till he's off completely. We then wait a week and if all is well, we'll then start weaning the Depakote. So hopefully we'll have less meds and less expense once we get him off his seizure meds.
We've also been able to get Ben a place at the local elementary school this fall. We're very excited b/c the school is very close to us and they have a full time school nurse so I know he'll be in good hands. I will probably still have to hire someone to go with him. Because his time will be split between 2 class rooms and to make sure he gets his snack when he's supposed to and that he doesn't eat anything else, he'll have a care giver/aide to facilitate his transitioning between classrooms and to assist/monitor Ben as needed. I'm totally willing to do it in order to help Ben and his teachers. School start at the end of the month. I'll have to talk with Ben's teachers & the nurse before then to do some staff ed. I also have to interview & hire the caregiver/aide. It's going to be a crazy couple of weeks. But compared to the roller coaster ride that is epilepsy, it's smooth sailing!
Hope everyone is well and staying cool. Enjoy the last dog days of summer!!
Some things are still a little tough. Ben has had quite a few days when he's really hungry. We had some friends over to swim this week and Ben whined alot b/c they brought food and he was still really hungry after dinner. I keep trying to get him to drink fruit flavored water or calorie & caffeine free soda to help curb his appetite but he really doesn't like it. I also bought a machine to make him shaved ice (alot like snow cones only smoother). He doesn't like the shaved ice either, it's to cold, but I'm not giving up yet. I have to find something else that will work as a snack & help with the hunger.
I've also realized that I've been depriving Grace. Since we started the diet, we haven't been eating any bread, bananas or crackers (all Ben's favorites). Last week, out of desperation, I made a half a PB&J sandwich for Grace. She was so thrilled, she hummed while she ate it & her hands were shaking as she stuffed the whole thing in her mouth. She choked it down & immediately asked for more. I felt so bad, the next morning I gave her a banana. She tried to stuff the whole thing in her mouth and she ended up eating 3 whole bananas for breakfast! (I hope this is just a phase or we'll be entering her in competitive eating competitions!)
We have hooked up with a compounding pharmacy. They will have to make any meds Ben may need if he gets sick (e.g. carbohydrate free antibiotics, allergy meds, motrin). They are a very small,very funky little pharmacy (only 4 staff members and no cash register!) But they are really thorough and go the extra mile (the pharmacist figured out a way to flavor Ben's Motrin & benadryl without adding carbs). The kicker is the expense. $85 for 2 small bottles of Motrin & benadryl. Something most folks get to pick up at any drug store or grocery. And, since they are not perscriptions, I don't think we'll be reimbursed by insurance. To add insult to injury, because they are"custom made" & not commercially manufactured, they expire in 8 weeks, 12 weeks tops! Oh well, the good news is that we are weaning Ben off his Keppra. It should take about 3 weeks till he's off completely. We then wait a week and if all is well, we'll then start weaning the Depakote. So hopefully we'll have less meds and less expense once we get him off his seizure meds.
We've also been able to get Ben a place at the local elementary school this fall. We're very excited b/c the school is very close to us and they have a full time school nurse so I know he'll be in good hands. I will probably still have to hire someone to go with him. Because his time will be split between 2 class rooms and to make sure he gets his snack when he's supposed to and that he doesn't eat anything else, he'll have a care giver/aide to facilitate his transitioning between classrooms and to assist/monitor Ben as needed. I'm totally willing to do it in order to help Ben and his teachers. School start at the end of the month. I'll have to talk with Ben's teachers & the nurse before then to do some staff ed. I also have to interview & hire the caregiver/aide. It's going to be a crazy couple of weeks. But compared to the roller coaster ride that is epilepsy, it's smooth sailing!
Hope everyone is well and staying cool. Enjoy the last dog days of summer!!
e martë, 31 korrik 2007
I think we're getting the hang of this....keep your fingers crossed!
We've just finished week 3 on the diet and we're all doing pretty well. We're weighing & measuring and writing everything down. With 3 meals & 2 snacks a day, we're using a lot of dishes & a ton of zip lock bags. Thankfully my friend Sara & Debbie each came over on a weekend and helped me get the meals ready for the next week. It was a major help.(BTW, do you know you can buy pasteurized eggs in the shell? I needed them for Ben's eggnog. How do they do that?)It was so nice to be able to grab something quick when Ben was starving or if we were late out the door. I think I'm going to have regular keto cooking sessions with my friends. I'll just have to bribe them with some non-keto food.
Ben was really hungry the first week. He kept asking for more food (even begging for carrots!) and he'd cry when his snack was done b/c he wanted more. One of the worst moments was at church on Sunday when he was so low energy that he actually laid down on the church playground. He was fine, he just didn't have any energy left. I felt so bad for Ben & so guilty. I wanted to call the dietitian and ask for more food but then in true Ben fashion, we had a role reversal on week 2. He didn't want to eat all of his foods and some nights he didn't eat any dinner at all. We didn't make it through one day without Ben refusing some food or a meal. The problem with the Keto diet is that you must eat all the food in each meal. So,I am definitely not going to ask for more food now b/c that'll just be more food to try to get Ben to eat. The keto literature says that the higher you can keep the ketones and the longer you can keep them high, the better chance you have of seizure reduction. And less calories means higher ketones. So unless Ben starts having major energy issues, I think we'll just wait & see.
The good news is that we've been able to keep Ben's ketones Large-XL (the highest on the scale)since he started the diet. And best of all Ben is still seizure free.YEAH! It's been almost a month since his last seizure which is the longest break he's had since last Sept. His Drs are going to let us start weaning off the meds so we are very excited. It's been amazing to see the little improvements in Ben. He's more focused,steadier on his feet and has new words everyday. Yesterday he bit Grace (She bit him first!) and he practically put himself in timeout! It's really going to be incredible seeing Ben come off his meds. We haven't know him without major medications in his system since he was nine months old. Even then he was seizing so frequently and had such developmental delay, we didn't get a good sense of who he was. I can't wait to get to know the real Ben.
Ben was really hungry the first week. He kept asking for more food (even begging for carrots!) and he'd cry when his snack was done b/c he wanted more. One of the worst moments was at church on Sunday when he was so low energy that he actually laid down on the church playground. He was fine, he just didn't have any energy left. I felt so bad for Ben & so guilty. I wanted to call the dietitian and ask for more food but then in true Ben fashion, we had a role reversal on week 2. He didn't want to eat all of his foods and some nights he didn't eat any dinner at all. We didn't make it through one day without Ben refusing some food or a meal. The problem with the Keto diet is that you must eat all the food in each meal. So,I am definitely not going to ask for more food now b/c that'll just be more food to try to get Ben to eat. The keto literature says that the higher you can keep the ketones and the longer you can keep them high, the better chance you have of seizure reduction. And less calories means higher ketones. So unless Ben starts having major energy issues, I think we'll just wait & see.
The good news is that we've been able to keep Ben's ketones Large-XL (the highest on the scale)since he started the diet. And best of all Ben is still seizure free.YEAH! It's been almost a month since his last seizure which is the longest break he's had since last Sept. His Drs are going to let us start weaning off the meds so we are very excited. It's been amazing to see the little improvements in Ben. He's more focused,steadier on his feet and has new words everyday. Yesterday he bit Grace (She bit him first!) and he practically put himself in timeout! It's really going to be incredible seeing Ben come off his meds. We haven't know him without major medications in his system since he was nine months old. Even then he was seizing so frequently and had such developmental delay, we didn't get a good sense of who he was. I can't wait to get to know the real Ben.
e shtunë, 21 korrik 2007
One week down, only 103 left to go.......
We've finally ended our first week on the keto diet. Like most of our family life living with an epileptic, it was a roller coaster ride. We started out on the weekend doing really well. Ben was eating well & we were thrilled. Hot dogs & carrots were a big hit. He didn't seem to mind all of the fat & the butter was going down & staying down. Our first rough day came on Tues.We had finished the last of the ketogenic eggnog so I gave Ben a small bit of scrambled egg for breakfast. He threw a fit, wouldn't stop whining & absolutely refused to eat it. We were late for therapy that morning, so I pitched the breakfast & out the door we went. Ben had nothing but butter & cream to eat. He's in camp this week from 10-12pm so I took a snack. Battle #2 came with the snack. I baked a ketogenic version of peanut butter muffins the night before & brought some with me. Ben took one bite & refused to eat any more. Luckily I brought another snack (peanut butter balls) with me. He loves them & ate it without complaint. I just ignore the fact that he had taken a bite of the other snack. Back at home for lunch I tried the hamburger meal. Ben seemed to be getting tired of the hot dogs (he started whining about the last few bites) so I thought we'd try hamburgers. Well that didn't go over very well. Unfortunately the rules of the diet are such that you can't start one meal, eat part of it & switch to something else. The whole meal is balanced & every part of the meal must be eaten in it's entirety to maintain the keto ratio of 4:1 (4 parts fat to 1 part protein & carb combined). Ben ate the salad & carrots & then refused the hamburger. He would let me put it in his mouth but then refused to swallow it. It was amazing in that he never tried to spit anything out. I think he knows that's not ok. He just wouldn't swallow anything. He sat there with his cheeks stuffed with hamburger & drool coming out the sides of his mouth. If it weren't so stressful, it would've been funny (even if it was a little disgusting). After 45mins I finally managed to get him to choke everything down.
Wens & Thursday passed with relative ease. And then again on Friday Ben had some issues with the meals I'm serving. Since scrambled eggs didn't work so well, and he really likes the mayo, I tried the yolk of a hard boiled egg with some mayo, again another "food fight". This time Grace joined in b/c she was at the table while Ben was eating & she was honked off b/c she wanted his egg plus string cheese which we were out of. So both were pitching a fit, one refusing food the other wanting more food. Breakfast lasted so long we totally missed morning snack & were in danger of running right into lunch (Ironically I still hadn't had breakfast myself). When dinner rolled around, I thought we'd tried diced ham, similar to hot dogs right? Well, Ben didn't think so, so we had another stand off. Luckily Ted came home by then & took over the battle. I just can't wait till we try chicken & mashed turnips next week!
I'm trying not to push Ben too much with diet changes but at the same time, we've learned from his feeding therapy that if I let him eat the same food over & over, he'll eventually drop that food & not ever eat it again. So I'm trying to preserve the hot dog (feeble pun intended). He has been eating some of the foods easily & it's really nice to see. Jello with whipped cream, keto yogurt & shredded iceberg lettuce with mayo are all new favorites. We never thought we'd see him eat some of this stuff. So we're grateful for the food he is eating.
Ben is definitely feeling hungry most of the time, even when he eats his full meal. The portions are very small & he's only been allotted 800cal/day. In the past few days he's suddenly become very aware of what everyone else is having to eat & he's taken to surfing the kitchen counter. Luckily we're been very good about keeping it clear of food. I think we may soon be putting a childproof lock on the refrig. Wens am Ben got up at 6am, came upstairs and asked for "breakfast". We we're impressed by the use of his new word. Hunger must be a very strong motivating factor. Sometimes I feel guilty depriving him, but I try to keep in mind what a gift it will be if he can come off medication & can live a life without seizures
The dietitian has told us that his hunger will subside after a week or 2 on the diet. He'll never feel full but he won't feel hungry either. Anyone who's dieted can relate. You eat that weight watchers dinner & think, "well that was good, but now what". In fact Ben has taken to whining little bit at the end of his meals I think b/c he's done and he knows there's no more food till the next snack. The good news is, with 3 meals & 2 snacks a day, during the day,food is never more that 2-3 hrs away.
I do plan on asking the dietitian for an increase in calories, especially before Ben goes back to pre-school. I think he'll need the extra energy.
The best news overall is that we've kept Ben's ketones in the Large to X-large range & he's remained seizure free since the first day of his diet (7/9). In fact his last "big seizure was on 7/2. The really interesting thing is that not only has Ben been seizure free since starting the diet but there is something about him that seems more solid & more focused. I can't quite explain it but others have noticed it as well. If he continues to remain seizure free, we'll start weaning one his medications in a another week. A very good thing and a major motivation.
Wens & Thursday passed with relative ease. And then again on Friday Ben had some issues with the meals I'm serving. Since scrambled eggs didn't work so well, and he really likes the mayo, I tried the yolk of a hard boiled egg with some mayo, again another "food fight". This time Grace joined in b/c she was at the table while Ben was eating & she was honked off b/c she wanted his egg plus string cheese which we were out of. So both were pitching a fit, one refusing food the other wanting more food. Breakfast lasted so long we totally missed morning snack & were in danger of running right into lunch (Ironically I still hadn't had breakfast myself). When dinner rolled around, I thought we'd tried diced ham, similar to hot dogs right? Well, Ben didn't think so, so we had another stand off. Luckily Ted came home by then & took over the battle. I just can't wait till we try chicken & mashed turnips next week!
I'm trying not to push Ben too much with diet changes but at the same time, we've learned from his feeding therapy that if I let him eat the same food over & over, he'll eventually drop that food & not ever eat it again. So I'm trying to preserve the hot dog (feeble pun intended). He has been eating some of the foods easily & it's really nice to see. Jello with whipped cream, keto yogurt & shredded iceberg lettuce with mayo are all new favorites. We never thought we'd see him eat some of this stuff. So we're grateful for the food he is eating.
Ben is definitely feeling hungry most of the time, even when he eats his full meal. The portions are very small & he's only been allotted 800cal/day. In the past few days he's suddenly become very aware of what everyone else is having to eat & he's taken to surfing the kitchen counter. Luckily we're been very good about keeping it clear of food. I think we may soon be putting a childproof lock on the refrig. Wens am Ben got up at 6am, came upstairs and asked for "breakfast". We we're impressed by the use of his new word. Hunger must be a very strong motivating factor. Sometimes I feel guilty depriving him, but I try to keep in mind what a gift it will be if he can come off medication & can live a life without seizures
The dietitian has told us that his hunger will subside after a week or 2 on the diet. He'll never feel full but he won't feel hungry either. Anyone who's dieted can relate. You eat that weight watchers dinner & think, "well that was good, but now what". In fact Ben has taken to whining little bit at the end of his meals I think b/c he's done and he knows there's no more food till the next snack. The good news is, with 3 meals & 2 snacks a day, during the day,food is never more that 2-3 hrs away.
I do plan on asking the dietitian for an increase in calories, especially before Ben goes back to pre-school. I think he'll need the extra energy.
The best news overall is that we've kept Ben's ketones in the Large to X-large range & he's remained seizure free since the first day of his diet (7/9). In fact his last "big seizure was on 7/2. The really interesting thing is that not only has Ben been seizure free since starting the diet but there is something about him that seems more solid & more focused. I can't quite explain it but others have noticed it as well. If he continues to remain seizure free, we'll start weaning one his medications in a another week. A very good thing and a major motivation.
e premte, 13 korrik 2007
There's no place like home...There's no place like home...
We finally made it home. YEAH! We got into town about 7:30 am this morning & after picking up some keto friendly groceries for Ben, we got to the house by 8:30. It was so wonderful to get back home. We've been so lucky to have Carrie & her mom staying at the house. It was such a relief to know that someone was at the house & that we didn't need to worry about things while we were gone. Carrie & her mom really out did themselves and had the whole house spic & span (way cleaner than I left it for them) and they left flowers & gifts for each of us. What a lovely homecoming. And I was already feeling a little guilty about coming home so unexpected & so early. We hadn't planned on coming in till dinner time on Friday but it's been up & down since Ben's first meal on Wens night so we just wanted to get home. After we picked up Grace at my parents place in Deep creek, we just took a quick nap & then hit the road by midnight & drove straight through the night
Ben's had intermittent vomiting & flushing of his face & limbs. He is also at times fairly irritable & is not drinking enough between meals. So of course he's still really wiped out. He likes the ketogenic eggnog but the heavy fat in the diet really upsets his stomach. Since wens night Ben has only been able to eat 2 meals & keep it down. The folks at JHU told us that all of this is to be expected. It's really hard for the body to switch from glucose metabolism to fat. They promise that he'll get used to it within the next week. Ben has been asking for his favorite foods (all not allowed on the diet) and when we tell him no, he refuses any other food. The JHU folks tell us that this too will change over the next week, he's just testing the ground rules. We'll see what happens. After only a few days on the diet, Ben already seems more calm & focused & I know he's been using more novel words & more sentences.
I'm just determined that we'll quit this diet only b/c it's not working for Ben, not b/c he won't eat it. Especaiily now that we know it's worked so well for other kids with his type of epilepsy.
I spent 3 hrs this evening making keto snacks, keto yogurt, and freezing butter. None of the recipes were difficult just a little time consuming. With a little practice I hope all the weighing & measuring will become second nature.
Thanks again for all your support, it means alot. Keep in touch.
-Meg
Ben's had intermittent vomiting & flushing of his face & limbs. He is also at times fairly irritable & is not drinking enough between meals. So of course he's still really wiped out. He likes the ketogenic eggnog but the heavy fat in the diet really upsets his stomach. Since wens night Ben has only been able to eat 2 meals & keep it down. The folks at JHU told us that all of this is to be expected. It's really hard for the body to switch from glucose metabolism to fat. They promise that he'll get used to it within the next week. Ben has been asking for his favorite foods (all not allowed on the diet) and when we tell him no, he refuses any other food. The JHU folks tell us that this too will change over the next week, he's just testing the ground rules. We'll see what happens. After only a few days on the diet, Ben already seems more calm & focused & I know he's been using more novel words & more sentences.
I'm just determined that we'll quit this diet only b/c it's not working for Ben, not b/c he won't eat it. Especaiily now that we know it's worked so well for other kids with his type of epilepsy.
I spent 3 hrs this evening making keto snacks, keto yogurt, and freezing butter. None of the recipes were difficult just a little time consuming. With a little practice I hope all the weighing & measuring will become second nature.
Thanks again for all your support, it means alot. Keep in touch.
-Meg
e martë, 10 korrik 2007
End of Day Two
We've made it thorough day two. Ben is doing really well but remains very tired. He has now had a total of 4 very small keto eggnogs and a small amount of no cal, no carb liquids. That's been it since Sunday night. He has +4 (large amt) of ketones in his urine and his blood sugar has been hanging around in the 70's. Which, believe it or not is where we want him. We are basically rewiring him to use fat / ketones as an energy source instead of carbs/sugar So you can see why he's wiped out.
We had a bit of a shock. As Ted mentioned earlier, the Drs here think Ben has Doose syndrome (see link in previous email). We came here for the diet & never expected to get a diagnosis too. It's overwhelming especially since we never had one in all these years. Equally impressive is that both admitting Dr's mentioned it as soon as they saw him & his chart. (this occurred at 2 different places in the hospital & 2 different times of the day!). Amazing considering Ben has been followed by neurologists in Raleigh & at Duke for 4 yrs & no one ever mentioned Doose. It's a rare form of epilepsy but the good news is that the ketogenic diet is highly effective for treatment. In fact success on the keto diet can be used as a differential diagnosis.
Everyone here has been wonderful and we're so lucky to have my sister Sue with us to help out. She stays with Ben when we go to classes. She has been a HUGE help. We're in a semi-private room, which I was dreading but our roommates are another couple just like us. The mom is a nurse, dad is a hands on dad(in fact he stays every night) & they have a 4yr old son who was diagnosed with Doose last year. What could be better. They're great & we're learning a lot from each other. Of course as things happen, they were transferred to another room on another floor to make room for another little boy who came in this morning. No one was happy about it, including the Drs . The new folks are great, but they have a little boy who is eating, and he's on a no fat diet, without calorie restrictions. So just the opposite of us & not a great fit. They are only here for 24 hrs & will go home tomorrow afternoon. Then we'll get our old buddies back.
When we're at home, I often feel isolated b/c of Ben's condition. Almost all the parents I know have healthy, "on targetl" kids. They don't live with the daily impact of frequent Dr's visits, multiple therapy sessions & lots & lots of meds. And the parents that I do know who have special needs children, are not dealing with epilepsy. So their issues are not the same. Coming here to meet 3 other families who have had almost the exact same journey, the same struggles & same concerns, has been very, very therapeutic. I almost feel as if I've joined my first parenting club. My first "mommy's morning out", where I really feel connected with the others in the group. Another benefit from our hospital stay, is that no matter how bad I feel for Ben, or how sorry I feel for anything Ted & Grace & I have to deal with as a family, every time we come into a hospital, I see folks who are dealing with so much more. You'd think you'd be emotionally drained and exhausted, and we are tired, but surprisingly we also realize how lucky & blessed we are.
Tomorrow, more classes & keto eggnog & by dinner time Ben will finally get solid food. YEAH! It's a small amount of food but a very big deal.
Please keep us in your thoughts & prayers,
We miss you all and we hope you & yours are doing well.
-Meg
We had a bit of a shock. As Ted mentioned earlier, the Drs here think Ben has Doose syndrome (see link in previous email). We came here for the diet & never expected to get a diagnosis too. It's overwhelming especially since we never had one in all these years. Equally impressive is that both admitting Dr's mentioned it as soon as they saw him & his chart. (this occurred at 2 different places in the hospital & 2 different times of the day!). Amazing considering Ben has been followed by neurologists in Raleigh & at Duke for 4 yrs & no one ever mentioned Doose. It's a rare form of epilepsy but the good news is that the ketogenic diet is highly effective for treatment. In fact success on the keto diet can be used as a differential diagnosis.
Everyone here has been wonderful and we're so lucky to have my sister Sue with us to help out. She stays with Ben when we go to classes. She has been a HUGE help. We're in a semi-private room, which I was dreading but our roommates are another couple just like us. The mom is a nurse, dad is a hands on dad(in fact he stays every night) & they have a 4yr old son who was diagnosed with Doose last year. What could be better. They're great & we're learning a lot from each other. Of course as things happen, they were transferred to another room on another floor to make room for another little boy who came in this morning. No one was happy about it, including the Drs . The new folks are great, but they have a little boy who is eating, and he's on a no fat diet, without calorie restrictions. So just the opposite of us & not a great fit. They are only here for 24 hrs & will go home tomorrow afternoon. Then we'll get our old buddies back.
When we're at home, I often feel isolated b/c of Ben's condition. Almost all the parents I know have healthy, "on targetl" kids. They don't live with the daily impact of frequent Dr's visits, multiple therapy sessions & lots & lots of meds. And the parents that I do know who have special needs children, are not dealing with epilepsy. So their issues are not the same. Coming here to meet 3 other families who have had almost the exact same journey, the same struggles & same concerns, has been very, very therapeutic. I almost feel as if I've joined my first parenting club. My first "mommy's morning out", where I really feel connected with the others in the group. Another benefit from our hospital stay, is that no matter how bad I feel for Ben, or how sorry I feel for anything Ted & Grace & I have to deal with as a family, every time we come into a hospital, I see folks who are dealing with so much more. You'd think you'd be emotionally drained and exhausted, and we are tired, but surprisingly we also realize how lucky & blessed we are.
Tomorrow, more classes & keto eggnog & by dinner time Ben will finally get solid food. YEAH! It's a small amount of food but a very big deal.
Please keep us in your thoughts & prayers,
We miss you all and we hope you & yours are doing well.
-Meg
Abonohu te:
Postimet (Atom)
