Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Dear Lori, My heart is aching for you but you have had such good control for 5 years and trust that you will get it back again. GRant has been on daistat numerous times and the first time he got it at 1:00 am the neurologist told me he would slleep like a baby. Well, needless to say at 2:30 he was still up playing in his crib and I called the neurologist and theresponse was ... .GENERALLY IT PUTS KIDS TO SLEEP BUT THERE ARE THOSE KIDS THAT IT HAS THE ADVERSE EFFECT ON! Grant is one of those kids. He is always wound up when on it. Take it slow and work with the diet first as you have had such great success. We are all here for support. kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Lori I can only imagine how devestating new seizures would be after five years - was hard enough after almost two without any. Pour yourself a glass of wine (or something you enjoy), take a hot bubble bath, you deserve it. Then a deep breath - you have been weaning the diet haven't you? Isn't that why she is on a 1.4:1 ratio? Pretty low, maybe just two low for Ainsley. Perhaps its not the end of the world, just antoher speed bump along the seizure route, the one that tells you to slow down, forces you to stop for awhile - perhaps she simply needs a little higher ratio. Have you already went back, up to 4:1. I wonder if something like 3:1 woud bring you peace again. If it was me, I would certainly try to fine-tune the diet and up the ratio (or maybe other changes, five years of a growing girl has got to effect the diet's efficacy) before adding drugs. And I speak from experience in that we had perfect control for almost two years, when we lost it I worked on the diet for another year and a half before adding a drug to get control back. The benefit then was that with all this time on the diet we were able to figure out what Jess needs for seizure control so we weren't just shooting in the dark to pick up another drug. We had learned she needs acidity so we were able to pick a drug (diamox) that would give her that along with the diet (and appears to be working) instead of just picking up the next AED on the list. Vent and cry and punch a few pillows, or even walls, but don't give up LLR37@... wrote: > Dear Keto and Epilepsy Listmates: > > We have had a devastating week. > > One week ago had had her first seizure (at least that I've seen) in 5 years > I thought it was a simple partial. On Monday afternoon in the car, she > had some extremely bizarre behaviour, and I was then officially " freaking > out " . I called the neurologist. On Tuesday (Ainsley's 5.1 years on the KGD) > she was hooked up to an EEG machine. > > Unfortunately the EEG revealed that she was having Generalized Myoclonic > Spike Wave activity. Dr. Chez and I discussed what to do next. We chose to > take the ratio back up from 1.4:1 - to 3:1. All week I felt as thou she was > slipping away from me. Yesterday she was acting quite odd and having > numerous eye roll type seizures. I ended up calling the neuro in the > afternoon. Treatment consisted of Diasat at bedtime, and for today I am to > do Valium every 4-6 hours based off of eye roll activity seen. It took > Ainsley 4-1/2 hours to fall asleep after the Diastat! Anyone else encounter > that? I thought it was supposed to put them to sleep? > > Dr. Chez wants to start Depakote (Depacrap) on Monday. I know that the diet > and Depakote are contraindicated. I'm not sure what I'd like to do. I do > not want to do the diet AND Depakote (unless asbsolutely necessary). > > Ainsley has been so cooperative with the diet for the last 5 years. It was > very difficult for me emotionally to re-do all her meal plans at the higher > ratio and remove all of her newfound foods she likes. This is so unfair to > her. I can just see her quality of life slipping away. I place little hope > on the fact that a drug will help her -- they didn't before. > > I'm wondering if anyone might have a thought on what to do next. I know > Ainsley's experience has been somewhat unique, but I would appreciate any > input. > > Why did the diet fail so quickly after 5 years? > > Thanks in advance, > Lori R. > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Dear Lori, I wish I knew answers for you. I too am having problems with Chase having complex partials and being on the diet. Things have gotten worse for Chase, and he started a new seizure pattern, having short complex partials every 1 - 2 minutes for 2 - 4 hours at night, and last week he started having awake seizures at daycare, 3 in half an hours time, and they were bad ones. I've tried raising his ratio back up from 3.3 to 3.6, but he was at that ratio when he lost control back in April. I can't go higher than 3.8, he gets too ketotic. And he's a kidney stone developer, so I can't raise due to that reason as well. We decided to take Chase off the diet. My feelings are that if I have to have him on meds, then I might as well have him off the diet. I have a friend from another list who had her daughter on the diet for a length of time, I think it was a couple of years, and she had had seizure control, and then all of a sudden she started having seizures and she had to pull her off the diet. So I'm afraid I have no answers for you. I do know that the diet and depakote are contraindicated. What is your gut telling you? You have the final say-so. If you don't want Ainsley to start taking the depacrap, then say no. There are new seizure meds out, I think Keppra is supposed to be for partials and it's not contra-indicated to the diet. You might ask about that. But it's under studies for children, so you doctor might say no. All I can say is I'm sorry this has to happen to her. mom to Chase, 8 1/2, ketokid since 3/00, med-free since 3/01 still having seizures.....sigh --- LLR37@... wrote: > Dear Keto and Epilepsy Listmates: > > We have had a devastating week. > > One week ago had had her first seizure (at least > that I've seen) in 5 years > I thought it was a simple partial. On Monday > afternoon in the car, she > had some extremely bizarre behaviour, and I was then > officially " freaking > out " . I called the neurologist. On Tuesday > (Ainsley's 5.1 years on the KGD) > she was hooked up to an EEG machine. > > Unfortunately the EEG revealed that she was having > Generalized Myoclonic > Spike Wave activity. Dr. Chez and I discussed what > to do next. We chose to > take the ratio back up from 1.4:1 - to 3:1. All > week I felt as thou she was > slipping away from me. Yesterday she was acting > quite odd and having > numerous eye roll type seizures. I ended up calling > the neuro in the > afternoon. Treatment consisted of Diasat at > bedtime, and for today I am to > do Valium every 4-6 hours based off of eye roll > activity seen. It took > Ainsley 4-1/2 hours to fall asleep after the > Diastat! Anyone else encounter > that? I thought it was supposed to put them to > sleep? > > Dr. Chez wants to start Depakote (Depacrap) on > Monday. I know that the diet > and Depakote are contraindicated. I'm not sure what > I'd like to do. I do > not want to do the diet AND Depakote (unless > asbsolutely necessary). > > Ainsley has been so cooperative with the diet for > the last 5 years. It was > very difficult for me emotionally to re-do all her > meal plans at the higher > ratio and remove all of her newfound foods she > likes. This is so unfair to > her. I can just see her quality of life slipping > away. I place little hope > on the fact that a drug will help her -- they didn't > before. > > I'm wondering if anyone might have a thought on what > to do next. I know > Ainsley's experience has been somewhat unique, but I > would appreciate any > input. > > Why did the diet fail so quickly after 5 years? > > Thanks in advance, > Lori R. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Lori, My heart breaks for the week you have been through. My first thought was this: why not wait until she's been on the higher ratio for a little while before adding the medicine? I know you were looking so forward to ending the diet (with no seizures). Oh, I know it must have been hard to make those meals. This whole epilepsy life is such a hard one. Keep us informed on how she is doing. Praying for you guys. 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 On Sun, 29 Jul 2001 10:47:43 EDT LLR37@... writes: > Dear Keto and Epilepsy Listmates: > > We have had a devastating week. > > One week ago had had her first seizure (at least that I've seen) in > 5 years > I thought it was a simple partial. On Monday afternoon in the > car, she > had some extremely bizarre behaviour, and I was then officially > " freaking > out " . I called the neurologist. On Tuesday (Ainsley's 5.1 years on > the KGD) > she was hooked up to an EEG machine. > > Unfortunately the EEG revealed that she was having Generalized > Myoclonic > Spike Wave activity. Dr. Chez and I discussed what to do next. We > chose to > take the ratio back up from 1.4:1 - to 3:1. All week I felt as thou > she was > slipping away from me. Yesterday she was acting quite odd and > having > numerous eye roll type seizures. I ended up calling the neuro in > the > afternoon. Treatment consisted of Diasat at bedtime, and for today > I am to > do Valium every 4-6 hours based off of eye roll activity seen. It > took > Ainsley 4-1/2 hours to fall asleep after the Diastat! Anyone else > encounter > that? I thought it was supposed to put them to sleep? > > Dr. Chez wants to start Depakote (Depacrap) on Monday. I know that > the diet > and Depakote are contraindicated. I'm not sure what I'd like to do. > I do > not want to do the diet AND Depakote (unless asbsolutely necessary). > > > Ainsley has been so cooperative with the diet for the last 5 years. > It was > very difficult for me emotionally to re-do all her meal plans at the > higher > ratio and remove all of her newfound foods she likes. This is so > unfair to > her. I can just see her quality of life slipping away. I place > little hope > on the fact that a drug will help her -- they didn't before. > > I'm wondering if anyone might have a thought on what to do next. I > know > Ainsley's experience has been somewhat unique, but I would > appreciate any > input. > > Why did the diet fail so quickly after 5 years? > > Thanks in advance, > Lori R. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Lori, My heart breaks for the week you have been through. My first thought was this: why not wait until she's been on the higher ratio for a little while before adding the medicine? I know you were looking so forward to ending the diet (with no seizures). Oh, I know it must have been hard to make those meals. This whole epilepsy life is such a hard one. Keep us informed on how she is doing. Praying for you guys. 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 On Sun, 29 Jul 2001 10:47:43 EDT LLR37@... writes: > Dear Keto and Epilepsy Listmates: > > We have had a devastating week. > > One week ago had had her first seizure (at least that I've seen) in > 5 years > I thought it was a simple partial. On Monday afternoon in the > car, she > had some extremely bizarre behaviour, and I was then officially > " freaking > out " . I called the neurologist. On Tuesday (Ainsley's 5.1 years on > the KGD) > she was hooked up to an EEG machine. > > Unfortunately the EEG revealed that she was having Generalized > Myoclonic > Spike Wave activity. Dr. Chez and I discussed what to do next. We > chose to > take the ratio back up from 1.4:1 - to 3:1. All week I felt as thou > she was > slipping away from me. Yesterday she was acting quite odd and > having > numerous eye roll type seizures. I ended up calling the neuro in > the > afternoon. Treatment consisted of Diasat at bedtime, and for today > I am to > do Valium every 4-6 hours based off of eye roll activity seen. It > took > Ainsley 4-1/2 hours to fall asleep after the Diastat! Anyone else > encounter > that? I thought it was supposed to put them to sleep? > > Dr. Chez wants to start Depakote (Depacrap) on Monday. I know that > the diet > and Depakote are contraindicated. I'm not sure what I'd like to do. > I do > not want to do the diet AND Depakote (unless asbsolutely necessary). > > > Ainsley has been so cooperative with the diet for the last 5 years. > It was > very difficult for me emotionally to re-do all her meal plans at the > higher > ratio and remove all of her newfound foods she likes. This is so > unfair to > her. I can just see her quality of life slipping away. I place > little hope > on the fact that a drug will help her -- they didn't before. > > I'm wondering if anyone might have a thought on what to do next. I > know > Ainsley's experience has been somewhat unique, but I would > appreciate any > input. > > Why did the diet fail so quickly after 5 years? > > Thanks in advance, > Lori R. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Dear Lori, I really don't know what to say except how sorry I'm to hear this. It must be so disappointing for Ainsley and you. I totally understand your feelings about adding a drug. If you do have to add one, how about something other than Depakote? Why did the nero pick Dep? Is it something that was better than other Aeds in the past. I don't know Ainsley's circumstances. Just wondered whether it's something like puberty upsetting the control she had. Hope you regain the control you had, v.soon. Saro.....Rohan's mum LLR37@... wrote: Dear Keto and Epilepsy Listmates: We have had a devastating week. One week ago had had her first seizure (at least that I've seen) in 5 years I thought it was a simple partial. On Monday afternoon in the car, she had some extremely bizarre behaviour, and I was then officially "freaking out". I called the neurologist. On Tuesday (Ainsley's 5.1 years on the KGD) she was hooked up to an EEG machine. Unfortunately the EEG revealed that she was having Generalized Myoclonic Spike Wave activity. Dr. Chez and I discussed what to do next. We chose to take the ratio back up from 1.4:1 - to 3:1. All week I felt as thou she was slipping away from me. Yesterday she was acting quite odd and having numerous eye roll type seizures. I ended up calling the neuro in the afternoon. Treatment consisted of Diasat at bedtime, and for today I am to do Valium every 4-6 hours based off of eye roll activity seen. It took Ainsley 4-1/2 hours to fall asleep after the Diastat! Anyone else encounter that? I thought it was supposed to put them to sleep? Dr. Chez wants to start Depakote (Depacrap) on Monday. I know that the diet and Depakote are contraindicated. I'm not sure what I'd like to do. I do not want to do the diet AND Depakote (unless asbsolutely necessary). Ainsley has been so cooperative with the diet for the last 5 years. It was very difficult for me emotionally to re-do all her meal plans at the higher ratio and remove all of her newfound foods she likes. This is so unfair to her. I can just see her quality of life slipping away. I place little hope on the fact that a drug will help her -- they didn't before. I'm wondering if anyone might have a thought on what to do next. I know Ainsley's experience has been somewhat unique, but I would appreciate any input. Why did the diet fail so quickly after 5 years? Thanks in advance, Lori R. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Dear Lori, I really don't know what to say except how sorry I'm to hear this. It must be so disappointing for Ainsley and you. I totally understand your feelings about adding a drug. If you do have to add one, how about something other than Depakote? Why did the nero pick Dep? Is it something that was better than other Aeds in the past. I don't know Ainsley's circumstances. Just wondered whether it's something like puberty upsetting the control she had. Hope you regain the control you had, v.soon. Saro.....Rohan's mum LLR37@... wrote: Dear Keto and Epilepsy Listmates: We have had a devastating week. One week ago had had her first seizure (at least that I've seen) in 5 years I thought it was a simple partial. On Monday afternoon in the car, she had some extremely bizarre behaviour, and I was then officially "freaking out". I called the neurologist. On Tuesday (Ainsley's 5.1 years on the KGD) she was hooked up to an EEG machine. Unfortunately the EEG revealed that she was having Generalized Myoclonic Spike Wave activity. Dr. Chez and I discussed what to do next. We chose to take the ratio back up from 1.4:1 - to 3:1. All week I felt as thou she was slipping away from me. Yesterday she was acting quite odd and having numerous eye roll type seizures. I ended up calling the neuro in the afternoon. Treatment consisted of Diasat at bedtime, and for today I am to do Valium every 4-6 hours based off of eye roll activity seen. It took Ainsley 4-1/2 hours to fall asleep after the Diastat! Anyone else encounter that? I thought it was supposed to put them to sleep? Dr. Chez wants to start Depakote (Depacrap) on Monday. I know that the diet and Depakote are contraindicated. I'm not sure what I'd like to do. I do not want to do the diet AND Depakote (unless asbsolutely necessary). Ainsley has been so cooperative with the diet for the last 5 years. It was very difficult for me emotionally to re-do all her meal plans at the higher ratio and remove all of her newfound foods she likes. This is so unfair to her. I can just see her quality of life slipping away. I place little hope on the fact that a drug will help her -- they didn't before. I'm wondering if anyone might have a thought on what to do next. I know Ainsley's experience has been somewhat unique, but I would appreciate any input. Why did the diet fail so quickly after 5 years? Thanks in advance, Lori R. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Dear Lori, I really don't know what to say except how sorry I'm to hear this. It must be so disappointing for Ainsley and you. I totally understand your feelings about adding a drug. If you do have to add one, how about something other than Depakote? Why did the nero pick Dep? Is it something that was better than other Aeds in the past. I don't know Ainsley's circumstances. Just wondered whether it's something like puberty upsetting the control she had. Hope you regain the control you had, v.soon. Saro.....Rohan's mum LLR37@... wrote: Dear Keto and Epilepsy Listmates: We have had a devastating week. One week ago had had her first seizure (at least that I've seen) in 5 years I thought it was a simple partial. On Monday afternoon in the car, she had some extremely bizarre behaviour, and I was then officially "freaking out". I called the neurologist. On Tuesday (Ainsley's 5.1 years on the KGD) she was hooked up to an EEG machine. Unfortunately the EEG revealed that she was having Generalized Myoclonic Spike Wave activity. Dr. Chez and I discussed what to do next. We chose to take the ratio back up from 1.4:1 - to 3:1. All week I felt as thou she was slipping away from me. Yesterday she was acting quite odd and having numerous eye roll type seizures. I ended up calling the neuro in the afternoon. Treatment consisted of Diasat at bedtime, and for today I am to do Valium every 4-6 hours based off of eye roll activity seen. It took Ainsley 4-1/2 hours to fall asleep after the Diastat! Anyone else encounter that? I thought it was supposed to put them to sleep? Dr. Chez wants to start Depakote (Depacrap) on Monday. I know that the diet and Depakote are contraindicated. I'm not sure what I'd like to do. I do not want to do the diet AND Depakote (unless asbsolutely necessary). Ainsley has been so cooperative with the diet for the last 5 years. It was very difficult for me emotionally to re-do all her meal plans at the higher ratio and remove all of her newfound foods she likes. This is so unfair to her. I can just see her quality of life slipping away. I place little hope on the fact that a drug will help her -- they didn't before. I'm wondering if anyone might have a thought on what to do next. I know Ainsley's experience has been somewhat unique, but I would appreciate any input. Why did the diet fail so quickly after 5 years? Thanks in advance, Lori R. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 On Sun, 29 Jul 2001 15:14:22 +0000 "m.coole" writes: LoriI can only imagine how devestating new seizures would be after five years - was hardenough after almost two without any. Hey Lori, Man oh man, Im so sorry to read bout the seizures....I went to the HBO conference in Fl, and shut off my mail, so I caught your post on the end of Moe's response....Im so sorry!!!! Like , I sure can relate, after had his surgery in Feb he went seizure free for several months. When we started weaning drugs and saw the seizuers return (pheno withdrawals) It literally wiped me out! I can just imagine after all these years how you must feel! ((((((((((((((((((((Lori)))))))))))))))))))))) If you decide to be more aggressive in the alternative avenues and if I can help in any way, please let me know! Other wize just know that we are keeping you guys in our prayers! cya Barb ps...Depacrap would be my last choice!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Lori -- I'm so sorry to hear this. I remember that you wrote your success story the day I joined this list and I always held that close to keep me going. Anytime these darned seizures come back, it's so devastating. . . keep looking for answers and remember that the seizures are a symptom of something -- it's just up to us, as parents to unearth what becasue so often the medical community can't. . . just wanted to comment on one thing -- you mentioned Diastat and not being able to calm down to sleep. That's EXACTLY how reacts to it. It amazes me because it makes her extremely hyper and unable to relax. It's one of the things that's always made me go " hmmmm " -- because it seems that drugs have an opposite effect on her. For what it's worth -- based on what I've heard and read here, I'd be really cautious with Depakote. There are a lot of newer drugs on the market -- one's that weren't around 5 years ago -- perhaps there's anotehr way to go. Best of luck. I'll keep you close on thought.--DeEtte --- LLR37@... wrote: > Dear Keto and Epilepsy Listmates: > > We have had a devastating week. > > One week ago had had her first seizure (at least > that I've seen) in 5 years > I thought it was a simple partial. On Monday > afternoon in the car, she > had some extremely bizarre behaviour, and I was then > officially " freaking > out " . I called the neurologist. On Tuesday > (Ainsley's 5.1 years on the KGD) > she was hooked up to an EEG machine. > > Unfortunately the EEG revealed that she was having > Generalized Myoclonic > Spike Wave activity. Dr. Chez and I discussed what > to do next. We chose to > take the ratio back up from 1.4:1 - to 3:1. All > week I felt as thou she was > slipping away from me. Yesterday she was acting > quite odd and having > numerous eye roll type seizures. I ended up calling > the neuro in the > afternoon. Treatment consisted of Diasat at > bedtime, and for today I am to > do Valium every 4-6 hours based off of eye roll > activity seen. It took > Ainsley 4-1/2 hours to fall asleep after the > Diastat! Anyone else encounter > that? I thought it was supposed to put them to > sleep? > > Dr. Chez wants to start Depakote (Depacrap) on > Monday. I know that the diet > and Depakote are contraindicated. I'm not sure what > I'd like to do. I do > not want to do the diet AND Depakote (unless > asbsolutely necessary). > > Ainsley has been so cooperative with the diet for > the last 5 years. It was > very difficult for me emotionally to re-do all her > meal plans at the higher > ratio and remove all of her newfound foods she > likes. This is so unfair to > her. I can just see her quality of life slipping > away. I place little hope > on the fact that a drug will help her -- they didn't > before. > > I'm wondering if anyone might have a thought on what > to do next. I know > Ainsley's experience has been somewhat unique, but I > would appreciate any > input. > > Why did the diet fail so quickly after 5 years? > > Thanks in advance, > Lori R. > ===== 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. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Lori -- I'm so sorry to hear this. I remember that you wrote your success story the day I joined this list and I always held that close to keep me going. Anytime these darned seizures come back, it's so devastating. . . keep looking for answers and remember that the seizures are a symptom of something -- it's just up to us, as parents to unearth what becasue so often the medical community can't. . . just wanted to comment on one thing -- you mentioned Diastat and not being able to calm down to sleep. That's EXACTLY how reacts to it. It amazes me because it makes her extremely hyper and unable to relax. It's one of the things that's always made me go " hmmmm " -- because it seems that drugs have an opposite effect on her. For what it's worth -- based on what I've heard and read here, I'd be really cautious with Depakote. There are a lot of newer drugs on the market -- one's that weren't around 5 years ago -- perhaps there's anotehr way to go. Best of luck. I'll keep you close on thought.--DeEtte --- LLR37@... wrote: > Dear Keto and Epilepsy Listmates: > > We have had a devastating week. > > One week ago had had her first seizure (at least > that I've seen) in 5 years > I thought it was a simple partial. On Monday > afternoon in the car, she > had some extremely bizarre behaviour, and I was then > officially " freaking > out " . I called the neurologist. On Tuesday > (Ainsley's 5.1 years on the KGD) > she was hooked up to an EEG machine. > > Unfortunately the EEG revealed that she was having > Generalized Myoclonic > Spike Wave activity. Dr. Chez and I discussed what > to do next. We chose to > take the ratio back up from 1.4:1 - to 3:1. All > week I felt as thou she was > slipping away from me. Yesterday she was acting > quite odd and having > numerous eye roll type seizures. I ended up calling > the neuro in the > afternoon. Treatment consisted of Diasat at > bedtime, and for today I am to > do Valium every 4-6 hours based off of eye roll > activity seen. It took > Ainsley 4-1/2 hours to fall asleep after the > Diastat! Anyone else encounter > that? I thought it was supposed to put them to > sleep? > > Dr. Chez wants to start Depakote (Depacrap) on > Monday. I know that the diet > and Depakote are contraindicated. I'm not sure what > I'd like to do. I do > not want to do the diet AND Depakote (unless > asbsolutely necessary). > > Ainsley has been so cooperative with the diet for > the last 5 years. It was > very difficult for me emotionally to re-do all her > meal plans at the higher > ratio and remove all of her newfound foods she > likes. This is so unfair to > her. I can just see her quality of life slipping > away. I place little hope > on the fact that a drug will help her -- they didn't > before. > > I'm wondering if anyone might have a thought on what > to do next. I know > Ainsley's experience has been somewhat unique, but I > would appreciate any > input. > > Why did the diet fail so quickly after 5 years? > > Thanks in advance, > Lori R. > ===== 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. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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