L Carnosine and its effects on epilepsy and autism

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?

http://www.nutritionreview.org/library/autism.carnosine.php

http://vitamins.ultimatefatburner.com/carnosine-review.html

http://www.carn-aware.com/about.htm

http://www.autismcoach.com/Liquid_Carnosine_Plus_p/ac-004.htm

http://www.autismcoach.com/Articles.asp?ID=266

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Interesting, I was recently reading about carnosine and its relationship to aging and deficiency in vegetarians. I appreciate the additional resources!

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yes, it seems a *lot* of supplements that are beneficial for the brain in particular are vitamins, minerals, and amino acids found in meat, dairy, and eggs. Taurine, L-carnosine, Lysine, B vitamins... I think that's a part of the reason why low glycemic index diets and similar are effective even if the body doesn't go into ketosis. I'm sure ketosis itself does play a big role in helping with epilepsy but it seems there is more to it than that...not just avoiding carbs, but the good "stuff" in animals products as well. Of course, many of these are produced by the body, which is why vegetarians don't become completely deficient in vitamins and minerals...but when our kids are on drugs or just have problems producing them the way they should...they can end up deficient. (like sabril lowering taurine, etc)...its very interesting. i'm excited to see how Audrey continues to do on the L Carnosine.

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Hi asherraifsmom,

I read your post with interest and have a couple of questions...

1.) Have you talked to Audrey's neurologist or pediatrician about the use of any or all of these supplements and, if so, what were their responses? Did they raise any concerns?

2.) How do you get all these supplements in Audrey? My nearly 3-year-old daugther is a very picky eater and is extremely wary of anything new we try to introduce, as are many of our TS/autistic kids, so it would be a challenge for us to get all of this in her. Any suggestions?

3.) You mentioned finding a multivitamin on autismcoach.com that has higher concentrations of many of the vitamins you give Audrey, allowing you to consolidate several of her supplements. Can you tell me which multivitamin you're referring to?

Thanks, and my best to you and Audrey.

Cheers,
Matt

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Kaleigh is on prescription Carnitine. As are many kids on the keto diet. It is a close cousin to L Carnosine. She began getting to a stand independently and walking multiple gait cycles after a few days on it. You do need to be careful with Carnitine suppplementation though as it can increase seizures. It usually helps control seizures better on keto as it is "the shovel that moves the fat into the cell where it can be burned as energy."

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Kaleigh's mom- I read up quite a bit on L Carnosine (not Carnitine) and didn't read anything about it having the potential to increase seizures, and what i read was written by pediatric neurologists...only that it has the potential to stop them...there is a section on L Carnitine under amino acids section of the nutrition chapter in my alternative treatments in epilepsy book. I will look and see what it says. From my understanding L Carnosine helps in a number of ways by 1) helping to level out the zinc and copper levels, since those with autism tend to have too high of copper and too low of zinc and 2) it binds to GABA to form homocarnosine which is associated with better seizure control though they do not know why and 3) that L Carnosine pools in the frontal cortex of the brain which is where speech, impulse control, emotion, etc and higher level thinking is processed.

Matt-
I have not contacted her neurologist about L Carnosine yet, but I have talked with him about her going on Vitamin B, magnesium, turmeric, in really high doses, and afew other supplements. His response has always been "It can't hurt. Let's try it." He'll admit he's not a nutritionist so he isn't a ton of help on how much to give, etc. I've had to look that up on my own or from others who HAVE seen a nutritionist or finding articles on mg per kg of body weight, etc. But he's a really good neurologist who has managed Audrey's case very well and did his residency at Loma Linda (where there is a TSC Clinic). He's always been open to it and has never told me "oh no, dont do that.." Also, I'm very careful about what I give her, and the dosing. For instance, while with the rest of my family i prefer to treat most things herbally/naturopathically, I almost never use herbs with Audrey becaues herbs can interact with seizure meds. I've been working primarily with vitamins and minerals that are naturally found in every day foods, just in higher dosages. Obviously, certain supplements you can OD on, but i've been getting al ot of my info and dosing info from articles written by pediatric neurologists, such as the nutrition chapter by Dr Orrin Devinsky, one of the top epileptologists in the nation who works at NYU. In the book i have, they are careful to mention if there could be interactions with seizure meds, or if ther eis the potential for it increasing seizures (just like how some seizure meds can decrease or increase them depending on the individual) and if it is possible to OD on it. From what i've read it is almost impossible to overdose on L Carnosine. B vitamins are water soluble and while in REALLY REALLY massive doses with B6 it can cause neuropathy in the hands and feet, Audrey's neurologist prescribed her 100 mg of B6 a day when she first started having spasms, and that is 5000% the DV for an ADULT. And she was 4 months old at the time. With Magnesium, from my understanding you will know if the dose is too high because it causes diarrhea. With Audrey we just went to a high enough dose where she had diarrhea, and then lowered the dose a little. I'll admit a lot of my info i got from "google research" but i only went with reliable sources (nutritionists, neurologists, etc)

2- Audrey does not have autism and is really not picky about anything. We had a REALLY hard time when she was a baby by her gagging on all her meds that we gave via syringe and she'd throw a lot of it back up. But since she's been older we've been very lucky. We just mix things up in strawberry jam and she's good to go. However, these new supplements we have started her on are geared at those with autism and are meant to be palatable to a kid. The vitamin powder i think tastes like a flinstone vitamin...The liquid carnosine tastes like lemonade. It says you can hide the vitamin powder in an 8 oz cup of juice, but honestly I'd be afraid Audrey wouldnt drink it all and i wouldnt know how much she got in her. So i just mix it with a spoonful of jam and its usually no problem. But again...she's not picky. I'm sure if you contacted the owner of the autismcoach.com website, she could offer some suggestions, as she started the site in an effort to find natural treatments for her son who has autism and is now grown (and independent/highly functioning). When i had some questions about some of their products she did not hesitate to write me back in length. She was very helpful. She is just a parent who has done a lot of research, not a doctor, so she cant say "youshould do this" or whatever, but she knows a lot about the products she sells and about autism.

3- Here are the links to the two products i started Audrey on:
http://www.autismcoach.com/product_p/ac-008.htm (the vitamin powder)
http://www.autismcoach.com/Liquid_Carnosine_Plus_p/ac-004.htm (the liquid carnosine)

hope that helps!

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oh, ps- about dosing on the two, since audrey is only 2 years old...

On the vitamin powder it has dosing instructions for age 4 and up, and to ask a healthcare provider for ages younger than that. I compared the doses to what i already had audrey on with the magnesium and B vitamins, combined she is half the recommended age, and came up with just cutting the dose in half ( she has 1/2 tsp split into 1/4 tsp in the morning and 1/4 tsp in the evening). For instance, I had Audrey on 200 mg a day of Magnesium (a very high dose, but she doesnt have diarrhea after adjusting to it, and that is a common dose given to kids with autism), and this powder that 300 mg a day of magnesium in 1 tsp...so cutting it in half she'd be taking 150 mg a day. Also cutting it in half puts her at an even smaller dose of B vitamins than she had been taking, but i wanted to start off conservative. I may up her dose to the full 1 tsp a day, especially considering her size (she is in 4T clothing, is 37 inches tall and weighs approx 36 lbs), but i started at a more conservative dose.

There is dosing instructions based off weight for the L Carnosine...for under 50 lbs to start at 1/8 tsp per day. I started Audrey on that but i'm working her up to a higher dose. Since in the study done on kids with autism, 3 year olds were being given 400 mg 2x a day, and kids with epilepsy even higher levels than that (to control seizures)...But i found out the first day that i just jump up to that high of a dose, it may not cause toxicity but it makes her hyper. I'm back at that first days' dose now and she is not hyper, so i thinklike manythings, it just takes time for her body to adjust.

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*also- I should mention if i havent already...audrey does not have autism. But she does have epilepsy and there seems to be a lot of overlap in the brains of kids with both...and she is nonverbal, which is what attracted me to the L Carnosine and how it helps with speech*

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I was speaking only of Carnitine. As I said, a cousin to L Carnosine but doesn't have the same function and Carnitine and Carnosine are made of different amino acids. But, Carnitine can have the potential to increase seizures as per three seperate neurologists and the and FDA prescription warning information. The supplements are very close in name and can easily confused....simply an FYI

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*as you had also mentioned Carintine in part of the posting. Glad Audrey had a good response to the L Carnosine. We may try Kaleigh on L Carnosine in addition to her Carnitine. (Sorry about the double post my phone is causing prolems)

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yeah, i wasn't questioning anything about the carnitine; i havent really researched it at all besides skimming quickly a paragraph about it a while back, i was more just comparing what you said with what i knew about carnosine. I meant to add that i'm interested in looking into carnitine too since you said it was helping your daughter, and i've not read much about it yet. I just wanted to share our experiences with Carnosine because the impact was so huge it brought me to tears. If it helps even one other family to have a similar response to it, i'd be happy. :)

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