Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 I highly recommend the diet no matter what- the fact is that your child is still not seizure-free and that is a possbility with the diet!! My son Noah started out with just 1 seizure a week and that progressed into seizures all day long because of the medications he was taking. He started the diet shortly after that in March this year, and has been seizure-free since leaving the hospital. (We just celebrated 6 months seizure-free.) He also gained so much more in cognitive ability, speech, etc by going on the diet. He has no developmental delays at all. I know of some kids on the diet that aren't completely seizure-free yet, but their quality of life is SO much better because of the diet. If you have a doctor in support of the diet, that is awesome and RARE. It is definitely worth a try and not nearly as hard as you might imagine. (You might also want to check out in the files section on this group- there is a document about starting the diet that you might find informative.) Wish you the best! Mom to Noah- age 3, med-free, and seizure-free on the keto diet s38992002 s38992002@...> wrote: I'm still looking for some help in deciding if keto is the way to go for n. I've been in the site for about a week and noticed that it seems that most of the kids have many more seizures than n. He has had a history of seizures since he was born (preemie with a brain bleed.) They were under control until 8 months of age he developed infantile spasms. Since that he had been having seizures off and on until March 2004 he started having them every 7 to 10 days which for me is bad but after reading some of these messages these poor kids are having them a number of times daily. I guess what is concering me is that I was the one who asked my doctor about the diet and he agreed with me. What are your thoughts as parents and caregivers. Diane " 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 September 9, 2004 Report Share Posted September 9, 2004 Hi Diane Just my twopenny worth... I agree with whoever was saying about the medications making things worse - I'm convinced this has happened to Ben. He actually started to have myoclonics as a result of starting the Epilim/Depakote. The diet has woken Ben up and as we come off those horrible drugs he is improving and improving. When we're drug free I suspect it will be even better. If you feel your son is gradually getting more frequent seizures it may be worth asking the question could it be due to the drugs? Sorry if you have already posted about the meds he is on - I'm being lazy and not looking for any other posts! Rose Toms - Mum of Ben (9) in ketosis since Feb 04 and ready for take-off! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Bill Barber wrote: > There are many common negative side effects to the diet. There are > also > some rare but very serious, even fatal side effects. Just curious Bill, what are the fatal ones? Only ones I know of can potentially come from a few rare pre-existing conditions which should be screened out before keto is started Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Bill Barber wrote: > There are many common negative side effects to the diet. There are > also > some rare but very serious, even fatal side effects. Just curious Bill, what are the fatal ones? Only ones I know of can potentially come from a few rare pre-existing conditions which should be screened out before keto is started Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Bill Barber wrote: > There are many common negative side effects to the diet. There are > also > some rare but very serious, even fatal side effects. Just curious Bill, what are the fatal ones? Only ones I know of can potentially come from a few rare pre-existing conditions which should be screened out before keto is started Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Even the common side effects can be fatal if not addressed promptly; diarrhea, constipation, vomiting, dehydration, etc. For the less common ones, they range from liver failure to kidney stones, to heart problems. I don't have my old files here right now, but I can vaguely recollect problems with liver especially. Some of the patients were on concurrent regimes of one or more medications, so this can also be a hazard when going on the diet. These were articles from medical journals. Perhaps a computerized search would be able to locate them? Some of the children are very young and some are also considered medically fragile and some are unable to communicate distress. Even the difficulties of insufficient vitamins and minerals and possible effects of bone loss and high cholesterol can be serious in the long term. And for many of us, the diet is long term. Bill mmc@... wrote: > Bill Barber wrote: > > >> There are many common negative side effects to the diet. There are >>also >>some rare but very serious, even fatal side effects. > > > Just curious Bill, what are the fatal ones? Only ones I know of can > potentially come from a few rare pre-existing conditions which should be > screened out before keto is started > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Even the common side effects can be fatal if not addressed promptly; diarrhea, constipation, vomiting, dehydration, etc. For the less common ones, they range from liver failure to kidney stones, to heart problems. I don't have my old files here right now, but I can vaguely recollect problems with liver especially. Some of the patients were on concurrent regimes of one or more medications, so this can also be a hazard when going on the diet. These were articles from medical journals. Perhaps a computerized search would be able to locate them? Some of the children are very young and some are also considered medically fragile and some are unable to communicate distress. Even the difficulties of insufficient vitamins and minerals and possible effects of bone loss and high cholesterol can be serious in the long term. And for many of us, the diet is long term. Bill mmc@... wrote: > Bill Barber wrote: > > >> There are many common negative side effects to the diet. There are >>also >>some rare but very serious, even fatal side effects. > > > Just curious Bill, what are the fatal ones? Only ones I know of can > potentially come from a few rare pre-existing conditions which should be > screened out before keto is started > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Even the common side effects can be fatal if not addressed promptly; diarrhea, constipation, vomiting, dehydration, etc. For the less common ones, they range from liver failure to kidney stones, to heart problems. I don't have my old files here right now, but I can vaguely recollect problems with liver especially. Some of the patients were on concurrent regimes of one or more medications, so this can also be a hazard when going on the diet. These were articles from medical journals. Perhaps a computerized search would be able to locate them? Some of the children are very young and some are also considered medically fragile and some are unable to communicate distress. Even the difficulties of insufficient vitamins and minerals and possible effects of bone loss and high cholesterol can be serious in the long term. And for many of us, the diet is long term. Bill mmc@... wrote: > Bill Barber wrote: > > >> There are many common negative side effects to the diet. There are >>also >>some rare but very serious, even fatal side effects. > > > Just curious Bill, what are the fatal ones? Only ones I know of can > potentially come from a few rare pre-existing conditions which should be > screened out before keto is started > > > > Quote Link to comment Share on other sites More sharing options...
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