Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 Stella's Mom, I don't know your whole story, and computer probs keep me from being able to respond. But I quickly want to suggest that you get Stella off all meds before giving up on the diet. My son had 4 years on 6 or 7 meds, and had different seizure-types and different speech probs with each one. After weaning all drugs, he is now seiuzure free (though is having some sort of pychological events as a response to the trauma of the diet I suspect.) Our doctor believes it was the drugs that made his seizures worse all those years. Our case might not be like Stella's, his seizures were never as frequent as hers, so maybe my advice is not right. But then, maybe it is. We start counseling to deal with the freezing up episodes. The counslor is very optomistic. And one other thing. I would can the vegetarian approach to keto. Not because of seizure control necessareily, but just to make things easier on Stella. Her food choices are so limited any way. I wasn't going to give that advice when I saw your initial postings, but since you asked I would say: Can the vegetarian stuff. I used to be a vegetarian, too, and fed my kids limited beef/chicken. I have completely changed, now. Hang in there. And hello to everyone else. I'm not sure this message will go through. Gretchen > Friday we had a visit with the epi and the dietician. I guess we > didn't think there would be any new answers, but were hoping. The doc > has no other suggestions for stella other than to try the VNS implant > so we are meeting w/ a neuro surgeon to talk about that in the next > couple weeks, then she'll probally go in for the surgery in a months > time. > We are weaning her off the diazepam, so in 2 weeks that will be gone, > then we'll take another 2 weeks to take her off the diamox, then about > a month to take her off the lamictal. I really want my daughter's > brain to have a break. She's been on some sort of medicine for over 4 > 1/2 years now, and each one brings a new seizure type, I don't think it > could get much worse. > The dietician said to increase the MCT oil to 8g per meal, which I > calculate separately than her other oil. Her BHB is lower than when > she was first put on the diet. With all the tonic clonic seizure she > was having prior to the diet she hardly ate and I was using an atkins > approach to feeding her, but not weighing anyting. What is the most > frustrating is the more the diet is fine tuned the more seizures she > has. Calories keep getting lowered and her seizures get worse. Her > ratio goes up and her seizures get worse. I just have no clue as to > what to do. I've said i'll give it 6months to hope for improvement. > Monday stella is going in to be fitted for a helmet, she has so many > drop seizures now it's frightening. Over 50 yesterday, fortunately she > was held for most of them so she didn't hurt her self, but they are so > powerful, when she goes back it's difficult to keep a hold of her > especially since she weighs 45lbs now. > Being a vegetarian do you think there is a difference w/o the animal > fats? Most of you out there are giving your kids meat/fish etc and > stella is mostly getting her fat from olive/flax/MCT and coconut oil. > The other thing which has slipped is her short term memory, she can not > remember anything anymore. Looking at letters, she'll repeat them > after me, but then when I ask her to do it on her own, she has no clue > and is getting really upset. She starts kingergarden this fall and she > is going to be so behind all the other children, she will be in a > special ed class though, but still. > Another question to those of you out there, are you using a 1gram scale > or a 1/10th gram scale, just how accurate are you weighing the food. > Our dietician sent us home w/ a 1gram scale, but it sounds like others > are using the 1/10th scale. > Sorry this was so long, I had to get it all off my chest. > > amanda-mom to stella 5 1/2 years old, started keto diet May 10th 2004, > still waiting for her miracle. Weaning diazepam, on lamictal and > diamox and as needed diastat. Now considering the VNS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 - Just wanted to pipe in and say that I agree with Gretchen...being in this group I have learned that meds. definitely interfere with seizure control on the diet. My son actually had seizure control before all meds were weaned, but he is a different child now that all the meds are gone. They have so many side effects that affect their little brains..let alone the seizures. Please hang in there! Don't know much about animal vs. plant fat on the diet (other than possibly offering more choices as Gretchen said)... loves his sausage and hamburger though. The only other thing I would suggest is to wait till all meds are weaned before considering surgery...when the meds are gone, then the diet can really be fine tuned. Sounds like the meds are definitely interfering with that now. Don't give up! - mom to 2 and 1/2, ketokid since 10/03, seizure free since 11/03, med free since 7/04 gretchen_kissock gretchen_kissock@...> wrote: Stella's Mom, I don't know your whole story, and computer probs keep me from being able to respond. But I quickly want to suggest that you get Stella off all meds before giving up on the diet. My son had 4 years on 6 or 7 meds, and had different seizure-types and different speech probs with each one. After weaning all drugs, he is now seiuzure free (though is having some sort of pychological events as a response to the trauma of the diet I suspect.) Our doctor believes it was the drugs that made his seizures worse all those years. Our case might not be like Stella's, his seizures were never as frequent as hers, so maybe my advice is not right. But then, maybe it is. We start counseling to deal with the freezing up episodes. The counslor is very optomistic. And one other thing. I would can the vegetarian approach to keto. Not because of seizure control necessareily, but just to make things easier on Stella. Her food choices are so limited any way. I wasn't going to give that advice when I saw your initial postings, but since you asked I would say: Can the vegetarian stuff. I used to be a vegetarian, too, and fed my kids limited beef/chicken. I have completely changed, now. Hang in there. And hello to everyone else. I'm not sure this message will go through. Gretchen > Friday we had a visit with the epi and the dietician. I guess we > didn't think there would be any new answers, but were hoping. The doc > has no other suggestions for stella other than to try the VNS implant > so we are meeting w/ a neuro surgeon to talk about that in the next > couple weeks, then she'll probally go in for the surgery in a months > time. > We are weaning her off the diazepam, so in 2 weeks that will be gone, > then we'll take another 2 weeks to take her off the diamox, then about > a month to take her off the lamictal. I really want my daughter's > brain to have a break. She's been on some sort of medicine for over 4 > 1/2 years now, and each one brings a new seizure type, I don't think it > could get much worse. > The dietician said to increase the MCT oil to 8g per meal, which I > calculate separately than her other oil. Her BHB is lower than when > she was first put on the diet. With all the tonic clonic seizure she > was having prior to the diet she hardly ate and I was using an atkins > approach to feeding her, but not weighing anyting. What is the most > frustrating is the more the diet is fine tuned the more seizures she > has. Calories keep getting lowered and her seizures get worse. Her > ratio goes up and her seizures get worse. I just have no clue as to > what to do. I've said i'll give it 6months to hope for improvement. > Monday stella is going in to be fitted for a helmet, she has so many > drop seizures now it's frightening. Over 50 yesterday, fortunately she > was held for most of them so she didn't hurt her self, but they are so > powerful, when she goes back it's difficult to keep a hold of her > especially since she weighs 45lbs now. > Being a vegetarian do you think there is a difference w/o the animal > fats? Most of you out there are giving your kids meat/fish etc and > stella is mostly getting her fat from olive/flax/MCT and coconut oil. > The other thing which has slipped is her short term memory, she can not > remember anything anymore. Looking at letters, she'll repeat them > after me, but then when I ask her to do it on her own, she has no clue > and is getting really upset. She starts kingergarden this fall and she > is going to be so behind all the other children, she will be in a > special ed class though, but still. > Another question to those of you out there, are you using a 1gram scale > or a 1/10th gram scale, just how accurate are you weighing the food. > Our dietician sent us home w/ a 1gram scale, but it sounds like others > are using the 1/10th scale. > Sorry this was so long, I had to get it all off my chest. > > amanda-mom to stella 5 1/2 years old, started keto diet May 10th 2004, > still waiting for her miracle. Weaning diazepam, on lamictal and > diamox and as needed diastat. Now considering the VNS " 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...
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