Guest guest Posted May 27, 2004 Report Share Posted May 27, 2004 I am not sure if this is information already known to everyone, but just in case, I wanted to share it with all of you. I an sorry if you already all know this. Leanna (T8993C mutation) had a recent crisis this past December. She is doing really well now. She was ataxic, and lacking in energy to talk, eat or function for about one good month. Her doctor, Dr. Yano (works with Boles at CHLA) was really worried about the crisis. It looked like what happened to Samya was repeating itself. He told us about the use of Arginine liquid in Japan helping blood flow through the brain, and helping recovery tpo be better and quicker. It was not considered standard of care for mito here yet, but then again we were desperate. Arginine is an amino acid, and has no side effects and not harmful. It tasted terrible, but Leanna has been taking it since January non stop. She takes 2 tsp 3 times a day. She got used to it (It tasted soooBAD) and takes it with no problem at all. I do not know if that is what made a difference or just coincidence, but I felt it was worthwhile mentioning it to everyone.I think it might be very specific to her form (Leigh’s) or mutation, but I am not sure. I am wondering if anyone is familiar with this and if they are on it. I am curious as to whether it has helped as much for anyone else. It is compounded in the hospital pharmacy because the over the counter capsules would be 12 capsules a day. She would need that many a day to equal the liquid they compound it into. Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 Quote Link to comment Share on other sites More sharing options...
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