Re: New to group-

[Guest guest]

Hi ,

Thanks for your note. If you ever want to e-mail me separately given our

similar situations, please feel free. I would love to hear more about your

family, when you expect to start the keto program at Hopkins, where you live,

how you came to your decision to do the program, etc. We live in DC, so we are

fairly close to Hopkins.

To respond to your question about which supplements I give my daugher, here is

more or less what I have been trying over the last few weeks. I don't expect

any of these to be a cure per se, rather supplements that will support healing

in her brain. At a minimum I believe it is worth a try. I do think that it

is helping somewhat, but it has only been a few weeks now. My use of them also

conincided with my decision to stop my daughter completely from taking any AEDs

(at least for the time being). The change which occurred at that point was

dramatic in terms of her overall improvement, so its a bit hard to discern

exactly how much of an impact the supplements are having. However, she still

has many seizures every day.

Omega-3 and Omega-6 fatty acids - There is important research currently being

conducted on the use of these supplements for seizure control (see the following

link and others). Interestingly enough, Dr. Atkins wrote extensively about the

importance of supplementation of these fatty acids for people using his diet as

well. I mentioned that I was giving them to my daughter to Dr. Kossoff who is

in charge of the Atkins research at Hopkins, but he didn't seem to react in any

particular way to my use of them. I'm going to bring this up with him again the

next time I am able. He did note it in her clinic notes.

http://www.epilepsy.com/articles/ar_1088094124.html

L-carnosine

http://www.carn-aware.com/research.html - This is a link citing research on this

amino-acid supplement. I'm fairly skeptical about this one. I actually

dropped this one for now. Although I have read some good ancedotes about this

one from other parents of children with epilepsy on other yahoo groups.

GABA - when researching the AEDs my daughter was on, I read on the drug

companies websites speculation that the effective mechanism MIGHT be their

ability to facilitate the brain's ability to utilize GABA. This is the

rationale for supplementing directly with GABA. I orignially read about this

supplement in Treating Epilepsy Naturally by A. Keats Publishing

(a division of McGraw Hill), Two Penn Plaza, New York, New York 10121 USA

Softbound, ISBN 0 658 01379 3, c. 2002, pp. 322, $16.95

Taurine was from the same source, and is also mentioned in Prescription for

Nutritional Healing, one of the bibles in holistic/complementary therapies.

Daily vitamin supplements with calcium and magnesium. Ditto

I look forward to learning and sharing more with you and the other members of

the group.

Best wishes,