Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Leanna developed ataxia 5 days ago. It actually started the same day that her uncle Sam died, as many of you remember my e-mail entitled tragedy. Today I took her tp Children's Hospital of L.A. to see Dr. Yano. I am so lucky that last night was the memorial service and this morning I am at children's. I guess complaining to all of you is silly since we all have these times and a little too often. Anyways, I am begging for help and advice. She is supposed to start Arginine amino acid in a liquid form tomorrow. She has complex 5 disorder. The only thing she takes is lots of vitamins, but we have to try this to maybe(not even for sure) will help slow down the ataxia. She needs to swallow 2 tspns 3 times a day. God help me I tasted it and it is beyond nasty and soooooo bitter. I feel it is torture and only may help. I have never had to give such horrible medicine to my child. Please give me advice on how to diguise it etc. I figure you all must have some experience and can help. I really would appreciate any suggestions at all to this disgusting addition to her diet. I am desperate. THANKS 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 ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Suhad, I don't have experience with the Arginine. I just wanted to tell you I'm thinking about you guys and praying for you all. Cindy, mom to Seth & Ben (both mito) Quote Link to comment Share on other sites More sharing options...
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