While I continue to wait to hear back from NYU about brain surgery for Audrey, i've further poured over the pages of my book on alternative treatments in epilepsy: http://www.amazon.com/Complementary-Alternative-Therapies-Epilepsy-Devinsky /dp/1888799897/ref=sr_1_2?ie=UTF8&qid=1326731465&sr=8-2
The book is edited, and the nutrition section co-authored, by Dr Orrin Devinsky, neurologist at NYU and one of the top epileptologists in the country.
From reading through that chapter and then supplementing the info with studies i've found online (I heart google!), I've found a lot of supplements that have helped Audrey a lot: frankincense essential oils, magnesium, taurine, B-complex...helped with everything from her mood to her angios, to her sleep...in pretty remarkable ways. Several of the above have also been shown in clinical trials to have antiepileptic propertiies but so far none have stopped Audrey's seizures (she's still also on Sabril and Banzel)...
So i kept reading in that book, looking for anything that might help.
I came across a section under the Amino Acids subheading...on L-Carnosine. I read it held a lot of promise in controlling seizures so i googled...and found that a lot of people use it to treat autism naturally...and that it has been shown in blinded clinical trials performed by a neurologist to show significant improvement in expressive language, behavior, emotional impulse control and socialization in those with autism.
Through all this research I've realized there's a LOT of overlap between autism and epilepsy. lots of those on the spectrum have seizures, and lots with epilepsy develop autism. There's also a lot of similarity of what goes on in the brain and many of the vitamin supplements that help those with seizures are given to those with epilepsy (B Vitamins and magnesium, for example).
So I did some more research and found some REALLY interesting and promising information. Not only because of its possibility in controlling seizures, but because many parents have found that their nonverbal children started TALKING after taking L- Carnosine!! I found a great website- www.autismcoach.com-- that has supplements specifically for kids iwth autism, and one of their most popular products was the liquid L Carnosine. After reading the parents' comments I could not resist purchasing it. (I also found a multivitamin with much larger doses of vitamins that can help those with epilepsy, all in one mix, so i dont have to give her so many differnet supplements!)
I read that even on really large doses, they've found no side effects or overdoses, except in some in larger doses it causes hyperactivity and insomnia.
Anyway, the dosing said to give 1 tsp per day (250 mg). I started her off on 1/2 tsp. It DID make her more active and she DID wake up at 3 am that night wanting to PLAY...but the day i gave her that dose, she said FIVE new words, a 2 word phrase/sentence, and consonant sounds she's never made before...I cannot even begin to say how significant this is. She is 2, and she signs, but the only words she says is "Buh" for "book" and "PWAY!" for...well, she says it for everything. That's it. No hi, bye, not even Mama. She had said some other words in the past (pear, pwetty, etc), but it seems whenever she learned a new word, she forgot the ones she alreadyknew. If anything, her speech has regressed since July when her seizures came back...she's not really improved in her speech in over a YEAR. and she has speech therapy every single week and a developmental specialist who also works with her on it. She signs easily and responds, but she just cant make the words come out.
IN ONE DAY...she said Mama again, a lot...she said "Kitty kitty" (she'd never even said "K' sound before), she said "in" when we pointed to "in" and "out" in a picture book...she said "My Big" When mom told her she was a big girl....she also said "Peek Boo!"...and when mom asked her what sounds the animals made, she said them! Previously she could repeat what i said on some of them (moo, ack (quack), baa) but if you asked her what they said, she just said "Peep!" for all of them.
The next day, because of insomnia, i lowered her dose to 1/8 tsp...and no new words that day but she didnt lose the older ones like usual. And she slept normally.
So now i'm slowly trying to get her up to the right dose where we see that kind of improvement again, though without the insomnia. She has had seizures since starting it (well, one seizure..) but evidently it is given in MUCH larger doses for treating epilepsy...up to a few thousand mg a day.....
I'm also wondering if the insomnia in a larger dose is something that would eventually go away once her body adjusts...similar to what happens when they start on Sabril.
Anyway, I've included several articles on L Carnosine and a few that talk about the study done by Dr Chez in Chicago with kids with autism.
Just after what i saw that first day, I have really high hopes for this supplement. I had to share, because the results after just one dose literally made me cry. Has anyone else on here ever used L Carnosine for epilepsy and/or autism, and if so what results did you see?