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.
e martë, 31 korrik 2007
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
e hënë, 9 korrik 2007
End of Day one
Day one has been joyfully uneventfull. Ben's 24 hour fast was not much of a problem, and he ate the egg and oil milkshake around dinner time without too much fuss -- though with "assistance" from Meg. Classes start tomorrow morning. I'm sure Meg will do fine, but I expect to struggle a bit. I'll be the one saying "explain that to me as if I'm a computer geek." :-)
The conversations with the staff have gone really well. It appears they are all very accessible via phone and email, which will come in handy over the next few months.
There is some thought that Ben's epilepsy is Myoclonic-Astatic Epilepsy, or "Droose syndrome" (http://www.doosesyndrome.com/index.html), but that's a preliminary thought. One of the other patients is a 3.5 year old boy with Droose, and there are many similarities. The good news is that this type of epilepsy responds well to the Ketogenic diet. More on that as we learn more.
That's all from me. Till next time, Shalom
The conversations with the staff have gone really well. It appears they are all very accessible via phone and email, which will come in handy over the next few months.
There is some thought that Ben's epilepsy is Myoclonic-Astatic Epilepsy, or "Droose syndrome" (http://www.doosesyndrome.com/index.html), but that's a preliminary thought. One of the other patients is a 3.5 year old boy with Droose, and there are many similarities. The good news is that this type of epilepsy responds well to the Ketogenic diet. More on that as we learn more.
That's all from me. Till next time, Shalom
e diel, 8 korrik 2007
We're here.....finally
We're now settled into the Baltimore Radisson. It's a beautiful hotel just a couple of blocks from the Inner Harbor & a few minutes from JHU. Everyone has been really great so far and they're very accommodating to JHU patients. We've already seen a few patients in the lobby & cafe. We're in a little bit of sticker shock (no public parking only valet & we tipped 3 times before we even got to the room) But they do offer deep discounted rates to JHU patients (our room reservation was made by the hospital) & we're staying on the Plaza Club floor which takes a pass key to get to it & we have complimentary morning breakfast & afternoon cocktails & appetizers. So I think JHU hooked us up. It would be really grand if we only didn't have that whole hospital thing to deal with!
Ben did really well on his trip down but he didn't eat anything all day except for graham crackers sticks. So, we took him to dinner downstairs @ 9:30pm. I'm sure it was later than the Dr's would like but I just wanted him to have something a little more substantial than crackers before his 2 day fast. His last "regular" meal was grilled cheese & fries. He really only ate a couple bites so I don't feel so guilty feeding him so late. He kept asking for crackers & Ted told him he could have them later on. He didn't tell him he may have to wait two years for them!
Knowing Ben, he'll remember & ask again in two years!
I really want to thank everyone who helped out on our vacation. My family really tried to make sure we all had a great time & I have to say it was a wonderful week. Every helped out so we got to do all the things we wanted to do & also chill out when we wanted to. Some of my family came to visit us,so we didn't have to get back in the car & drive to see everyone. My parent's next door neighbors, the Egans, were also really sweet & lent us the use of their townhouse so we had plenty of elbow room for the whole gang. It was really a great week together with everyone.
I'm still really grateful to my family for their help. My sister Ann took Grace home with her for the week. I miss her already but I know she's having a great time b/c her older cousin Emily dotes on her. My mom went with Ann to help her out since Ann recently had foot surgery (I can't believe she took Grace, she insisted it was no big thing. She now has 3 kids under the age of 11 @ her house & she has her foot in a splint!) My oldest sister Sue took time off to come with us. We have daily classes to learn about the diet and Sue will stay with Ben to keep him company. She's already been a huge help to me with packing, directions, & planning, etc. She's also really helped to keep me calm & add a little bit of fun to this trip. Ted & I will alternate staying with Ben overnight in the hospital. Whoever has "the night off" will get to do a little sight seeing with Sue. It'll be a big help to break up the day & decrease the stress.
I'll try to update the blog as often as possible. Please keep us in your prayers. We miss you & can't wait to get back home.
Love to all,Meg
Ben did really well on his trip down but he didn't eat anything all day except for graham crackers sticks. So, we took him to dinner downstairs @ 9:30pm. I'm sure it was later than the Dr's would like but I just wanted him to have something a little more substantial than crackers before his 2 day fast. His last "regular" meal was grilled cheese & fries. He really only ate a couple bites so I don't feel so guilty feeding him so late. He kept asking for crackers & Ted told him he could have them later on. He didn't tell him he may have to wait two years for them!
Knowing Ben, he'll remember & ask again in two years!
I really want to thank everyone who helped out on our vacation. My family really tried to make sure we all had a great time & I have to say it was a wonderful week. Every helped out so we got to do all the things we wanted to do & also chill out when we wanted to. Some of my family came to visit us,so we didn't have to get back in the car & drive to see everyone. My parent's next door neighbors, the Egans, were also really sweet & lent us the use of their townhouse so we had plenty of elbow room for the whole gang. It was really a great week together with everyone.
I'm still really grateful to my family for their help. My sister Ann took Grace home with her for the week. I miss her already but I know she's having a great time b/c her older cousin Emily dotes on her. My mom went with Ann to help her out since Ann recently had foot surgery (I can't believe she took Grace, she insisted it was no big thing. She now has 3 kids under the age of 11 @ her house & she has her foot in a splint!) My oldest sister Sue took time off to come with us. We have daily classes to learn about the diet and Sue will stay with Ben to keep him company. She's already been a huge help to me with packing, directions, & planning, etc. She's also really helped to keep me calm & add a little bit of fun to this trip. Ted & I will alternate staying with Ben overnight in the hospital. Whoever has "the night off" will get to do a little sight seeing with Sue. It'll be a big help to break up the day & decrease the stress.
I'll try to update the blog as often as possible. Please keep us in your prayers. We miss you & can't wait to get back home.
Love to all,Meg
e mërkurë, 4 korrik 2007
More please.....
First of all, happy 4th of July to everyone. We hope you are all healthy & happy and enjoying the holiday. The McDaniel clan arrived safely at Deep Creek, Md on Saturday. We've had a wonderful time so far. The weather has been sunny and cool (high 70's) and we're loving it. We've done a lot of hiking at the local state parks (Swallow Falls). My Aunt Dee, Cousin Richie & Richie's son Max came down for a visit & we went exploring & swimming at the local nature center. Actually, swimming isn't the word. Ben & Grace fell in while walking along the waters edge. We didn't have extra clothes so we dressed them in their jackets. (see pics on the link at the left). We've also been reading & napping a lot too which is a rare teat.
Our family is coming in this afternoon to have a BBQ for the fourth & watch the fireworks over the lake. It's always a beautiful site to see them reflect over the water. Tomorrow we're renting a pontoon boat (or a "party boat" as the locals call it) to go out on the Lake. Lots of jumping off the back of the boat & floating. A great way to spend a day in July
The kids have been having a lot of fun. Ben is sleeping on a sleeping bag in the same room with Grace & they really enjoy it. Ted & I often hear them talking to each other but they don't come out of the room & eventually fall asleep without us having to intervene. Ben's favorite thing about sleeping on the floor is that in the morning he can come over and wake up mom & dad, usually between 6-7am! We get to nap but not to sleep in.
Ben did have a seizure on Monday but it resolved with just one dose of Diastat. He was still off the rest of the evening but was his usually self by the next morning. The most amazing thing is that he's eating everything in site. Not only quantity but variety. Watermelon, cheese, hot dogs, carrots, blueberries. He's eating so much he's actually asking for more when we're putting him to bed. This is amazing for a kid who spent a year going to feeding therapy once a week. I really enjoying watching him eat. Sometimes when he thinks it's really good, he hums as he eats! I think he got that from Grace. My big hope is that he will stay as open minded to the new & different food options on the diet and that we'll find something that he likes just as much. But, for now we're just enjoying the moment. I think tonight after fireworks, we'll get some ice cream from the local creamery, YUM!
Our family is coming in this afternoon to have a BBQ for the fourth & watch the fireworks over the lake. It's always a beautiful site to see them reflect over the water. Tomorrow we're renting a pontoon boat (or a "party boat" as the locals call it) to go out on the Lake. Lots of jumping off the back of the boat & floating. A great way to spend a day in July
The kids have been having a lot of fun. Ben is sleeping on a sleeping bag in the same room with Grace & they really enjoy it. Ted & I often hear them talking to each other but they don't come out of the room & eventually fall asleep without us having to intervene. Ben's favorite thing about sleeping on the floor is that in the morning he can come over and wake up mom & dad, usually between 6-7am! We get to nap but not to sleep in.
Ben did have a seizure on Monday but it resolved with just one dose of Diastat. He was still off the rest of the evening but was his usually self by the next morning. The most amazing thing is that he's eating everything in site. Not only quantity but variety. Watermelon, cheese, hot dogs, carrots, blueberries. He's eating so much he's actually asking for more when we're putting him to bed. This is amazing for a kid who spent a year going to feeding therapy once a week. I really enjoying watching him eat. Sometimes when he thinks it's really good, he hums as he eats! I think he got that from Grace. My big hope is that he will stay as open minded to the new & different food options on the diet and that we'll find something that he likes just as much. But, for now we're just enjoying the moment. I think tonight after fireworks, we'll get some ice cream from the local creamery, YUM!
e premte, 29 qershor 2007
Just one more thing before you go....
Well, we're finally packed up & ready to go. The van is so stuffed,if the load shifts I know we'll turn over. I'm going have to keep my eyes peeled for all the runaway truck roads, we may need them.
Our week did not end without it's crisis. On wens, 1/2 an hour before I was to go to work, the clinical director called to say our insurance "Cigna" denied Ben's admission b/c "he wasn't sick enough". WHAT! She said I needed additional paperwork from Dr Wooten (Ben's neurologist) and I had to get it that day( apparently they wanted a precise description and total count of all his different seizures. They also wanted a physician's note. I guess even if Wooten says he needs the diet, they want to determine if he needs the diet. So I called everyone. Dr Wooten is out of town until Monday & his nurse praticioner was leaving to go to the airport. The secretary was really helpful, but ironically the clinic nurse was the one who gave me the hardest time. A lot of sighing & "well we definitely can't do this today, maybe by Monday". I told her that I was sorry for the last minute request but I really didn't cause the problem & could she just please help me out. She said "I'll see what I can do" but her tone told me that she wasn't going to do anything. Luckily I was able to get Ben's last neuro clinic note from Duke & they faxed it to JHU. Case closed right?.......Wrong!
Then today (Friday, I got another call from the clinic director stating that she got the fax & it looked good but that we are out of network & that the coverage is 60/40.I can't believe it, less than 18hrs to go before departure & we're having paperwork problems. It's like we're living in the new Michale Moore movie.
Middleclass folks just can't get a break.
Anyway, this time I called Cigna myself. No more relayed info. Turns out Cigna doesn't even have the written request for pre-approval. And they confirmed that JHU & it's Drs are all in network. PHEW! So, if it looks like it wasn't Cigna's fault (at least not this time). We just need JHU to submit the pre-spproval paperwork & I guess we're good to go . what worries me is that it seems like the JHU insurance people are confused by Ben's admission. I just know that we're going to get some crazy astronomically high bill about 2 weeks after we get home. Oh well, take one day at a time& we'll deal with it when it happens.
Now that we're almost there I'm getting a little nervous & anxious. I'm excited to go but I'm scared to death that the diet won't help or we can't get Ben to eat it.
What's there to do but try.
Well, wish us luck. We pull out in the morning. I'll keep posting as often to keep everyone updated. We'll be home in 2 weeks. Keep in touch.
-Meg
Our week did not end without it's crisis. On wens, 1/2 an hour before I was to go to work, the clinical director called to say our insurance "Cigna" denied Ben's admission b/c "he wasn't sick enough". WHAT! She said I needed additional paperwork from Dr Wooten (Ben's neurologist) and I had to get it that day( apparently they wanted a precise description and total count of all his different seizures. They also wanted a physician's note. I guess even if Wooten says he needs the diet, they want to determine if he needs the diet. So I called everyone. Dr Wooten is out of town until Monday & his nurse praticioner was leaving to go to the airport. The secretary was really helpful, but ironically the clinic nurse was the one who gave me the hardest time. A lot of sighing & "well we definitely can't do this today, maybe by Monday". I told her that I was sorry for the last minute request but I really didn't cause the problem & could she just please help me out. She said "I'll see what I can do" but her tone told me that she wasn't going to do anything. Luckily I was able to get Ben's last neuro clinic note from Duke & they faxed it to JHU. Case closed right?.......Wrong!
Then today (Friday, I got another call from the clinic director stating that she got the fax & it looked good but that we are out of network & that the coverage is 60/40.I can't believe it, less than 18hrs to go before departure & we're having paperwork problems. It's like we're living in the new Michale Moore movie.
Middleclass folks just can't get a break.
Anyway, this time I called Cigna myself. No more relayed info. Turns out Cigna doesn't even have the written request for pre-approval. And they confirmed that JHU & it's Drs are all in network. PHEW! So, if it looks like it wasn't Cigna's fault (at least not this time). We just need JHU to submit the pre-spproval paperwork & I guess we're good to go . what worries me is that it seems like the JHU insurance people are confused by Ben's admission. I just know that we're going to get some crazy astronomically high bill about 2 weeks after we get home. Oh well, take one day at a time& we'll deal with it when it happens.
Now that we're almost there I'm getting a little nervous & anxious. I'm excited to go but I'm scared to death that the diet won't help or we can't get Ben to eat it.
What's there to do but try.
Well, wish us luck. We pull out in the morning. I'll keep posting as often to keep everyone updated. We'll be home in 2 weeks. Keep in touch.
-Meg
e martë, 26 qershor 2007
Take the good with the bad....
Today was another roller coaster ride in the McDaniel household. It started @ 7:30 with everyone getting up & ready to go in for Ben's pre-admission labs for JH. Ben had to be fasting so we woke him up last,put Emla cream on both arms to numb him up for the lab draw,collected a urine sample, put it on ice (there's no way I can get him to pee on demand in the lab,so I catch the first morning sample)& headed out the door.
The whole way there Ben kept asking for juice, then crackers (meaning his favorite cinnamon graham cracker sticks). This then got Grace asking for the same. I didn't give any to Grace b/c I didn't want to upset Ben. We got the appt by 9:03 (our appt was for 9am so this was on time for the McDaniel clan). we weren't seen until 9:40, the whole time I was in the waiting room, both kids were asking for food &/or trying to play with the other kids (the waiting area was packed).I am trying to keep Ben healthy before the admission & he already has a head cold so I was trying to minimize playtime with other sick kids in the waiting area. Once we finally were shown back to the lab area, I met a new phlebotomist (this was her first week) who asked me what labs I needed to have drawn & then proceeded to look then up them up in a lab processing manual. this was despite the fact that I had already faxed the request to the lab 2 weeks ago & just last week met with Ben's pediatrician & gave her a copy of the lab request. I handed the lady another copy of the lab request (I came prepared for this question). I explained to the new lady that I was concerned b/c Ben was fasting & that I had a urine sample in my bag which was now over an hour old. She then immediately looked at me and asked if Ben had eaten anything this morning and did I think he could pee in a cup b/c "we need a urine sample".
I knew then that things were going to get worse.
I tried to keep my cool b/c I really like the lab staff & they've always been great before. To sum it up it took 2 phlebotomists and 3 sticks to get the labs drawn. We left at 10:40. Unfortunately, when we got home the lab called to say they had a really weird result, probably from a clot & that meant we needed to do the lab again. I'm grateful that at least the lab result wasn't sent b/c I don't want anything to jeopardize our admission. So, I'm glad they called to ask for a repeat.
Things calmed down after that, everyone had lunch & a nap (well mom only had lunch). Then in the late afternoon, just to break up the monotony of 2hrs of peace & quiet. Emma our dog had a couple seizures in a row (some of you may know that our dog started having facial paralysis & seizures in April. I guess she thought she wasn't getting enough attention & saw how the seizures worked for Ben so she thought she'd give it a try!).
Once Emma settled & Ted got home, we went swimming. We had a great time. The water was clear & warm. Grace & Ben are both doing really well swimming. Grace is fearless & thinks she can swim. She actually kicks her legs & doggy-paddles with her arms (which I think is amazing for a 22 month old) but she sinks like a stone if you don't hold her up. Ben is cautious swimming but has gotten a lot better this year with a swim vest his Aunt Ann gave us. He loves to swim "on his own". Which means about 3-6 inches away.
Anyway, all was well for about 2 hrs & then when we came in Ben had a very long, very weird complex partial seizure. He came out of it with only one dose of Diastat but he was really slow to recover. It was almost as if he kept going back into a seizure. But the whole time he was seizing, he kept looking around & his eyes were open, with normal breathing so it was very hard to tell. This was his first big seizure in 3 1/2 weeks which is the longest we've gone all year. So we were expecting one. Ultimately, he recovered well & we all had some graham crackers & milk before he went to bed.
Speaking of which, Ben is now sleeping in his crib converted to a toddler bed. He thinks this is very cool. He sometimes gets up in the middle of the night to turn on his fish lamp & every now & then we can hear him playing with his shoes which hang on the back of the door (don't ask me why). But overall, he's really been good about going to bed & going to sleep. He has also been taking naps in a roll out sleeping bag (borrowed from his friend Philip)which we'll use on our vacation. He's really liking both of them. It's so funny to see him come walking out of his room after a nap and say "morning" (even in the afternoon) with a big grin on his face. He thinks he's a big man.
We had a lovely day this past Saturday when our friends from church came over for a pool party. It was the end of a week of vacation bible school & we had everyone over to swim. It was so much fun to spend time with everyone. The kids were hysterical jumping off the diving board & it was so funny & sweet to see Ginny Chorley sitting in the pool with all her clothes on (we had more little ones then big people in the shallow end & she jumped in, literally, to help out). Our church friends have been so kind & supportive, we're so glad we've found such a wonderful church family.
Actually I have to say that Ted and I have always been blessed with loving supportive people in our lives. Whether it's been from family members, church family, friends or coworkers. We've turned to the people in our lives over & over again & they have always been there to help us. Often they're there before we even know we need them. As we've been getting ready for our trip north, I have been overwhelmed by the amount of the help we been given, all kinds of help. Offers to take care of Grace, advice on directions & where to stay, offers of a family home to stay in from friends in both MD & Delaware,offers to take care of Emma,generous financial help,a friend mailed us her gram scale that she used when her son was on the diet, my mom & dad cleaned almost the entire house on their last visit, even the offer to come with us from someone who has a very busy personal & professional schedule of her own.
I am so grateful for the loving, supportive & generous people we know. It's b/c of their help we've managed to come this far, and also because of them that I know we'll be able to get through the next part of our journey. You learn to take the good with the bad. To make big celebrations over little moments and to turn to the good people in your life when you need them.
The whole way there Ben kept asking for juice, then crackers (meaning his favorite cinnamon graham cracker sticks). This then got Grace asking for the same. I didn't give any to Grace b/c I didn't want to upset Ben. We got the appt by 9:03 (our appt was for 9am so this was on time for the McDaniel clan). we weren't seen until 9:40, the whole time I was in the waiting room, both kids were asking for food &/or trying to play with the other kids (the waiting area was packed).I am trying to keep Ben healthy before the admission & he already has a head cold so I was trying to minimize playtime with other sick kids in the waiting area. Once we finally were shown back to the lab area, I met a new phlebotomist (this was her first week) who asked me what labs I needed to have drawn & then proceeded to look then up them up in a lab processing manual. this was despite the fact that I had already faxed the request to the lab 2 weeks ago & just last week met with Ben's pediatrician & gave her a copy of the lab request. I handed the lady another copy of the lab request (I came prepared for this question). I explained to the new lady that I was concerned b/c Ben was fasting & that I had a urine sample in my bag which was now over an hour old. She then immediately looked at me and asked if Ben had eaten anything this morning and did I think he could pee in a cup b/c "we need a urine sample".
I knew then that things were going to get worse.
I tried to keep my cool b/c I really like the lab staff & they've always been great before. To sum it up it took 2 phlebotomists and 3 sticks to get the labs drawn. We left at 10:40. Unfortunately, when we got home the lab called to say they had a really weird result, probably from a clot & that meant we needed to do the lab again. I'm grateful that at least the lab result wasn't sent b/c I don't want anything to jeopardize our admission. So, I'm glad they called to ask for a repeat.
Things calmed down after that, everyone had lunch & a nap (well mom only had lunch). Then in the late afternoon, just to break up the monotony of 2hrs of peace & quiet. Emma our dog had a couple seizures in a row (some of you may know that our dog started having facial paralysis & seizures in April. I guess she thought she wasn't getting enough attention & saw how the seizures worked for Ben so she thought she'd give it a try!).
Once Emma settled & Ted got home, we went swimming. We had a great time. The water was clear & warm. Grace & Ben are both doing really well swimming. Grace is fearless & thinks she can swim. She actually kicks her legs & doggy-paddles with her arms (which I think is amazing for a 22 month old) but she sinks like a stone if you don't hold her up. Ben is cautious swimming but has gotten a lot better this year with a swim vest his Aunt Ann gave us. He loves to swim "on his own". Which means about 3-6 inches away.
Anyway, all was well for about 2 hrs & then when we came in Ben had a very long, very weird complex partial seizure. He came out of it with only one dose of Diastat but he was really slow to recover. It was almost as if he kept going back into a seizure. But the whole time he was seizing, he kept looking around & his eyes were open, with normal breathing so it was very hard to tell. This was his first big seizure in 3 1/2 weeks which is the longest we've gone all year. So we were expecting one. Ultimately, he recovered well & we all had some graham crackers & milk before he went to bed.
Speaking of which, Ben is now sleeping in his crib converted to a toddler bed. He thinks this is very cool. He sometimes gets up in the middle of the night to turn on his fish lamp & every now & then we can hear him playing with his shoes which hang on the back of the door (don't ask me why). But overall, he's really been good about going to bed & going to sleep. He has also been taking naps in a roll out sleeping bag (borrowed from his friend Philip)which we'll use on our vacation. He's really liking both of them. It's so funny to see him come walking out of his room after a nap and say "morning" (even in the afternoon) with a big grin on his face. He thinks he's a big man.
We had a lovely day this past Saturday when our friends from church came over for a pool party. It was the end of a week of vacation bible school & we had everyone over to swim. It was so much fun to spend time with everyone. The kids were hysterical jumping off the diving board & it was so funny & sweet to see Ginny Chorley sitting in the pool with all her clothes on (we had more little ones then big people in the shallow end & she jumped in, literally, to help out). Our church friends have been so kind & supportive, we're so glad we've found such a wonderful church family.
Actually I have to say that Ted and I have always been blessed with loving supportive people in our lives. Whether it's been from family members, church family, friends or coworkers. We've turned to the people in our lives over & over again & they have always been there to help us. Often they're there before we even know we need them. As we've been getting ready for our trip north, I have been overwhelmed by the amount of the help we been given, all kinds of help. Offers to take care of Grace, advice on directions & where to stay, offers of a family home to stay in from friends in both MD & Delaware,offers to take care of Emma,generous financial help,a friend mailed us her gram scale that she used when her son was on the diet, my mom & dad cleaned almost the entire house on their last visit, even the offer to come with us from someone who has a very busy personal & professional schedule of her own.
I am so grateful for the loving, supportive & generous people we know. It's b/c of their help we've managed to come this far, and also because of them that I know we'll be able to get through the next part of our journey. You learn to take the good with the bad. To make big celebrations over little moments and to turn to the good people in your life when you need them.
e hënë, 18 qershor 2007
Ben's Birthday
We celebrated Ben's 4th birthday yesterday. We had a bunch of friends & family over for a pool party & did a "finding Nemo" theme (it seemed appropriate for a pool party). The weather was beautiful & we all had a wonderful time. Ben still wears a vest when he swims but this year he's swimming better than ever, He's very confident & swims all over the pool ( of course we always watch him like a hawk & stay close). He's so funny b/c he loves "jumping" off the steps into the pool. He does this great big build up & then sort of slides into the pool instead of jumping. He thinks he's Greg Louganis & we always make a big fuss.
Ben always loves cake & candles & singing but this year I think he really understood that everyone was singing for him. He was so cute b/c he had this huge grin but was also kind of shy. It was also the first time he really got into blowing out the candles. It was really sweet & lots of fun to watch.
Hopefully, if the diet works, it'll be a long time before he can have cake & ice cream again. So I'm so glad we had a big party. And I'm so glad we had so many loving friends & family to celebrate with us. I posted a link to pics from the party (actually Ted did it, I couldn't make it work!)
Hope you enjoy them.
Ben always loves cake & candles & singing but this year I think he really understood that everyone was singing for him. He was so cute b/c he had this huge grin but was also kind of shy. It was also the first time he really got into blowing out the candles. It was really sweet & lots of fun to watch.
Hopefully, if the diet works, it'll be a long time before he can have cake & ice cream again. So I'm so glad we had a big party. And I'm so glad we had so many loving friends & family to celebrate with us. I posted a link to pics from the party (actually Ted did it, I couldn't make it work!)
Hope you enjoy them.
e martë, 12 qershor 2007
Ben's story
This blog has been set up for our son Benjamin McDaniel. Ben was diagnosed with multi-focal epilepsy when he was 9 months old. He has suffered a variety of seizures ever since and they have increased in frequency. Yesterday he turned 4 yrs old.These past few years have been an emotional roller coaster ride complete with ambulance rides, hospitalizations, buckets of medications & hours of therapy.
Through it all we've had many people helping us on our journey. Amazing physicians & specialists, dedicated & supportive therapists & teachers,loving friends & family. In a few weeks the next step in our journey takes us to Johns Hopkins Hospital for admission into their ketogenic diet program. This will require a week long in-patient stay. We set up this blog so that everyone who cares about Ben can check on him while he's in the hospital. We'll update the blog daily, if possible. We value all of the love, prayers & support from the wonderful people who are a part of Ben's life. We look forward to hearing from you all & appreciate your continued, love, support & prayers.
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