Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 Did any of your children's seizures change after beginning the diet? My daughter, , has wet the bed at night off and on for years. (She is 8). I have never known if it is because she sleeps so deeply from her high levels of medication or if she was seizuring in her sleep. Something has changed though. She now awakes during urination which she has never done before. The other thing is this....she has 3 times now told me that she feels like she is having a seizure in her head, but shows no physical signs of one. She used to do a lot of hard swallowing, staring, jerking, etc. Any advice or thoughts? On a side note...she has been incredibly hungry yesterday and today so her dietician upped her calories by 10%. Is this the fine tuning that you guys talk about? She is now at 1470 calories, 24.5 grams of protein per day. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 Pam -- Yes, 's seizures changed dramatically following the diet. A lot of it, though, I think was due also to weaning meds. Right now, we're pretty much down to seizures at night -- which she had never had before starting the diet. It's what leads me to believe that there's a blood sugar and/or digestive issue at the root of this. Is weaning any meds -- or did they go cold turkey on anything in the hospital. has complained of " hitting in her head " during and after she came off Lamictal. It's gotten better the further away from Lamictal she's gotten (she's been med-free for nearly 3 months) -- but we went through a lot of tough behavioral issues during that time. As for advice, I would stay very observant -- keep a journal and note any changes, including the foods she's eating and anything new you might be introducing. You may see some patterns. Ride it out for a couple weeks -- remember 's body has gone through a major change, it's going to take awhile for her to balance out. It actually sounds like she's doing very well. It's not uncommon at all to be very hungry at the beginning of the diet -- certainly was. I would probably advise against a calorie increase until you see what she's like balanced out. was starving and my husband really wanted to up calories right away. We decided to ride it out and it was a good thing, because 7 months into the diet we found that she'd actually gained 5 pounds, without a corresponding gain in height. We actually ended up having to drop calories by 50. How big is ? is 6 years old, 41 1/4 inches and 42 pounds and gets 1100 calories/day -- your calories sound a little high to me, but I'm not as experienced as some on this list are at running the numbers. Good luck. . . keep hanging in there. . . you're doing great!--D --- Pam wrote: > Did any of your children's seizures change after > beginning the diet? My daughter, , has wet the > bed at night off and on for years. (She is 8). I > have never known if it is because she sleeps so > deeply from her high levels of medication or if she > was seizuring in her sleep. > > Something has changed though. She now awakes during > urination which she has never done before. The > other thing is this....she has 3 times now told me > that she feels like she is having a seizure in her > head, but shows no physical signs of one. She used > to do a lot of hard swallowing, staring, jerking, > etc. > > Any advice or thoughts? > > On a side note...she has been incredibly hungry > yesterday and today so her dietician upped her > calories by 10%. Is this the fine tuning that you > guys talk about? She is now at 1470 calories, 24.5 > grams of protein per day. > > Pam > ===== DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ " I know God would never give me more than I can handle. . .I just wish he didn't trust me so much. " __________________________________________________ Terrorist Attacks on U.S. - How can you help? Donate cash, emergency relief information http://dailynews.yahoo.com/fc/US/Emergency_Information/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Hi Pam, Yes, we had an extraordinary start to the diet. Within hours, I didn't recognize my daughter. I didn't know if she was having seizures or not. She had new " jerks " and was acting totally different from the day before. Our seizure record has lots of " new " seizures. We also discovered that she was toxic on her medications as some of the " side effects " were stopped by the diet. In particular, nastygmus, and sleeping for hours during the day. The good part was that she was much more alert and the seizures were shorter and afterwards instead of sleeping for a couple of hours, she would carry on with what she had been doing as if nothing had happened. After 6 months we were able to wean her medication and she is continuing to change each day. You should expect the unexpected on this thing! Hunger can often be a sign of too many calories! Also I think that there is a mental idea of what constitutes a meal and it isn't the same amount on the diet. Fat has more than twice the calories of protein and fat, so your quantities will be less than half. This can take an adjustment of course in the mind. I went on a diet with my daughter and it was hard, but I lost 30 pounds. I was hungry all day long, salivated continuously and thought about food most of the time! The rest of the time I worried about the diet! Best of luck, Bill > Pam wrote: > > Did any of your children's seizures change after beginning the diet? > My daughter, , has wet the bed at night off and on for years. > (She is 8). I have never known if it is because she sleeps so deeply > from her high levels of medication or if she was seizuring in her > sleep. > > Something has changed though. She now awakes during urination which > she has never done before. The other thing is this....she has 3 times > now told me that she feels like she is having a seizure in her head, > but shows no physical signs of one. She used to do a lot of hard > swallowing, staring, jerking, etc. > > Any advice or thoughts? > > On a side note...she has been incredibly hungry yesterday and today so > her dietician upped her calories by 10%. Is this the fine tuning > that you guys talk about? She is now at 1470 calories, 24.5 grams of > protein per day. > > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Hi Pam, Yes, we had an extraordinary start to the diet. Within hours, I didn't recognize my daughter. I didn't know if she was having seizures or not. She had new " jerks " and was acting totally different from the day before. Our seizure record has lots of " new " seizures. We also discovered that she was toxic on her medications as some of the " side effects " were stopped by the diet. In particular, nastygmus, and sleeping for hours during the day. The good part was that she was much more alert and the seizures were shorter and afterwards instead of sleeping for a couple of hours, she would carry on with what she had been doing as if nothing had happened. After 6 months we were able to wean her medication and she is continuing to change each day. You should expect the unexpected on this thing! Hunger can often be a sign of too many calories! Also I think that there is a mental idea of what constitutes a meal and it isn't the same amount on the diet. Fat has more than twice the calories of protein and fat, so your quantities will be less than half. This can take an adjustment of course in the mind. I went on a diet with my daughter and it was hard, but I lost 30 pounds. I was hungry all day long, salivated continuously and thought about food most of the time! The rest of the time I worried about the diet! Best of luck, Bill > Pam wrote: > > Did any of your children's seizures change after beginning the diet? > My daughter, , has wet the bed at night off and on for years. > (She is 8). I have never known if it is because she sleeps so deeply > from her high levels of medication or if she was seizuring in her > sleep. > > Something has changed though. She now awakes during urination which > she has never done before. The other thing is this....she has 3 times > now told me that she feels like she is having a seizure in her head, > but shows no physical signs of one. She used to do a lot of hard > swallowing, staring, jerking, etc. > > Any advice or thoughts? > > On a side note...she has been incredibly hungry yesterday and today so > her dietician upped her calories by 10%. Is this the fine tuning > that you guys talk about? She is now at 1470 calories, 24.5 grams of > protein per day. > > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Pam: Rosemary will occasionally cry " mom " and run to me like she is going to have a seizure, but not actually have a seizure. I think she is feeling an aura, but not actually seizing. Someone with epilepsy controlled by meds told me that he would feel an aura occasionally & I think that's what's happening here (although she can't tell me). Someone else here asked how often she eats. That's good to look at. Several smaller meals or " snacks " built into her day may take the edge off her appetite and/or give her the social experience of eating too. mom to Rose ketokid 8/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Pam: Rosemary will occasionally cry " mom " and run to me like she is going to have a seizure, but not actually have a seizure. I think she is feeling an aura, but not actually seizing. Someone with epilepsy controlled by meds told me that he would feel an aura occasionally & I think that's what's happening here (although she can't tell me). Someone else here asked how often she eats. That's good to look at. Several smaller meals or " snacks " built into her day may take the edge off her appetite and/or give her the social experience of eating too. mom to Rose ketokid 8/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Pam: Rosemary will occasionally cry " mom " and run to me like she is going to have a seizure, but not actually have a seizure. I think she is feeling an aura, but not actually seizing. Someone with epilepsy controlled by meds told me that he would feel an aura occasionally & I think that's what's happening here (although she can't tell me). Someone else here asked how often she eats. That's good to look at. Several smaller meals or " snacks " built into her day may take the edge off her appetite and/or give her the social experience of eating too. mom to Rose ketokid 8/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Pam writes: >She now awakes during urination which > she has never done before. Pam, when went into ketosis we saw a ......how do I put it....... " brightening up. " It was almost immediate - he felt soooo much better. Of course in the new following weeks, he felt better & better because the seizures were slowing down. Anyway, I think the ketones sometimes give the brain a boost. A different thought is that maybe you eliminated something in her diet which was maybe messing with the hormone that tells us " to go. " The more I deal with and this diet, the more I believe that the food we eat has a major impact on our lives (in ways that we would never know unless we did an elimination procedure with every food that we eat - which would basically be impossible). Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Pam writes: >She now awakes during urination which > she has never done before. Pam, when went into ketosis we saw a ......how do I put it....... " brightening up. " It was almost immediate - he felt soooo much better. Of course in the new following weeks, he felt better & better because the seizures were slowing down. Anyway, I think the ketones sometimes give the brain a boost. A different thought is that maybe you eliminated something in her diet which was maybe messing with the hormone that tells us " to go. " The more I deal with and this diet, the more I believe that the food we eat has a major impact on our lives (in ways that we would never know unless we did an elimination procedure with every food that we eat - which would basically be impossible). Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Pam writes: >She now awakes during urination which > she has never done before. Pam, when went into ketosis we saw a ......how do I put it....... " brightening up. " It was almost immediate - he felt soooo much better. Of course in the new following weeks, he felt better & better because the seizures were slowing down. Anyway, I think the ketones sometimes give the brain a boost. A different thought is that maybe you eliminated something in her diet which was maybe messing with the hormone that tells us " to go. " The more I deal with and this diet, the more I believe that the food we eat has a major impact on our lives (in ways that we would never know unless we did an elimination procedure with every food that we eat - which would basically be impossible). Kathy in Tennessee Mom to - 6 - Keto kid since 02/00, Med free, seizures 95% reduced Mom to 'lil sis, a - 3 " Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. " Isaiah 46:4 ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
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