Posted by Teri
on September 30, 2000 at 17:57:06:
In Reply to: Teri posted by Sarah on September 30, 2000 at 00:17:06:
: : : : Hello. I have a daughter who is 7 years old with down syndrome. At 6 months of age she started having seizures. They haven't stopped. All meds wouldn't work at all. This past July we started the Ketogenic Diet and for the last 3 weeks we haven't seen a seizure. She had had more than 30 daily. She has Lennox-Gasteau.Does anyone out there have a child with DS and seizures or on the diet or something. My daughter is 7 but mentally 8 months of age but a doll and we love her immensely. Would love to hear from anyone! Thanks.
: : : Hi Debbie
: : : I have a child with autism/epilepsy. I think you will have more luck on Downs syndrome boards although I did have some luck getting onto children's epilepsy sites of which there are a few. I have joined my local epilepsy organisation which has been alot of help and read every book in the library. As a parent of a special needs child I feel for you and wish you all the luck in the world.
: : : Best wishes
: : : Sarah
: : My child is also autistic and has seizures. Because of the autism I didn't want to put her on anti-convulsants. But I couldn't find a neurologist who would use the keto diet first. We found her siezure threshold (hypoglycemia) and a low-blood sugar diet works well, for now. I often wonder if this threshold will change, maybe because of the autism, I don't know. But I've read a lot about the keto diet and I hope it continues to work for your child. My child didn't have that many siezures, but the few she has had is one too many. My deepest regards for you and your family, Teri
: Hi Teri
: Great to talk to another parent in the same boat! My boy was going through seizures quite regulary - we tried one type of meds. which didn't control his seizures properly and made him very letharic. The meds. he is on now I must admit have been (so far) great in controlling his seizures, he is much more alert and it seems to be helping him with his autism (he appears to be more switched on). I thought about the keto diet but at the end just couldn't organise myself and our family to do it. If you do start the keto diet I would love to hear how you go. Sarah
Hi Sarah, I started corresponding with a keto consultant. I've learned that the diet's protocols are slowly changing. Meaning that doctors are giving serious consideration to using the diet first instead of as a last ditch effort to control seizures. It's cheaper and no side-effects, sans, seizures. I've been using a naturalpathic doctor. Through homeopathy my daughter doesn't stem, no SIB's, and the perseverance has disappeared. She will still jump when she becomes anxious or excited, but then again sometimes I do too. LOL;-) I've read about the keto diet and have implemented some of the concepts. For instances, I've introduced more fat (omega 3 type fat) and try to keep the ratio of carbs to protein at 2:1. When she was recently going through a growing phase I had to switch the ratio, 1:2. I read that a influx of hormones (growth, for example) can cause a cascading effect that throws everything out of sync. She had one seizure during that time. She has stopped growing(am I a happy woman?!!!!). I don't know much about DS except to rule it out in regards to my child. She's fourteen now. Taller then me. Two weeks ago she had her braces removed. I don't know of any other autistics who've had braces. I might write a book about the experience. Her orthodonists might write one too! Take care. If you ever need a warm ear to bend, this has become one of my favorite topics. Regards, Teri