Saturday, July 11, 2009

Choline

I have to share this. It's not scientifically proven yet, but whatever...

The new mom in North Carolina, whose son was wrongly diagnosed with cerebral palsy, had been giving him choline as a supplement as instructed by one of her doctors. She saw great improvements within a couple hours of his first dose. Now the doctors are wondering why choline helped a child with GAMT deficiency. One doctor at UNC wrote me back and said that "Choline metabolism is very related to the metabolism of creatine". Sam's geneticist says "it's possible it could help, but I need more data". I'm not trying to challenge anyone, but I have been working at "figuring things out" for so long, that I can't help but be curious about any leads for helping Samantha even more. A week or so ago Samantha ended the day with enough protein allowance to have an egg with her dinner. This is a total treat for her because she loves eggs and hadn't had one since February. That evening Trey and I both noticed how well she was doing with her speech and behavior (always validating for me if he notices too) and I joked that "maybe it was the egg". While researching this choline topic, I found out that eggs are an excellent source of choline. Anyone else find this interesting or am I just a crazy, desperate mom??
I will play by the books for now, but am definitely not against Sam providing the needed "data" by being a test patient if they feel it is totally safe to give her this.
Her yes and no continue to improve and just today she had some new utterances, a breathy "helmet" when she wanted to ride her bike and "stomp" while singing "if you're happy and you know it stomp your feet".

1 comment: