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.
Abonohu te:
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