Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
I've read that lecithin is a key ingredient with myelin formation. I recently bought "liquid" lecithin derived from soy-beans and have been giving approximately 1tsp to our son who has Alexander's Disease. Does anyone have any experience with lecithin? Does it help? Hurt?
I haven't heard of that but please keep us all posted on any progress!
I had read the same thing. And started giving my daughter, who has CACH, Lecithin last summer. Don't know if it helped. But she hasn't regressed and it definitely didn't hurt.
MM...How do you give it to your daughter? It is so sticky yet oily. It has a very strange consistency. It makes my son gag. I've tried putting it in pudding and peanut butter but he can detect it and then won't eat those items. Thanks.
I found capsules at Whole Foods and I put it in peanut butter or juice. Some time it works, some times it doesn't.
Hope that helps,
Margaret
Where can you buy the Lecithin? Does it come in pill form?
Hi Lora...sorry it's taken me so long to reply. We've been on vacation the past week. I found lecithin at our local natural foods store. I've heard it's available in a capsule form but I haven't found it that way. I can buy it in the liquid or granule form. The liquid form has a very strange consistency (like slimey honey) and I haven't found a way to disguise it so my son will eat it. Hope this helps.
do you know if this will help a post transplant child with a form of leukodystrophy?
Sorry, I do not know if it will help post transplant. There's some good info on "Myelin Repair" discussion (I think you've posted there).
Blessings.
This is very interesting and I will be looking into it! Thanks for posting about this.
You can buy lecithin in a transdermal cream. Very helpful for kids who won't take it by mouth or others who may have stomach issues. I give my son several supplements using this method of delivery.
ZanesMom,
Where do you find transdermal cream? Also, what other supplements do you give your son?
thanks
Add to the discussion