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, just letting you know that I am still thinking of your family. It must be such a hard time. About the medicine, ask your pharmacy if they can flavor it. I know all the big, and most of the little, pharmacies offer this service. It is called FlavorRx, I think it is like 2 bucks. They advertise that they will even do otc meds, so if your pharmacy does not offer it try taking it to another one that does. I am sure Rite Aid has it, that is where we go. My oldest usually takes an antibiotic called Vantin, it tastes horrible. Even she will take it when flavored by this stuff. They offer over 20 flavors, so ask your daughter what she likes before you go. Good luck. 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 pray that each day is getting alittle easier for you and the family during this time. I've been thinking about you each day and know that when it is a surprise tradegy like that it is more difficult to take in. But you are a strong person and family and you will be able to guide the others in their time of grief. As for the flavor first check into getting the medicine a flavor as stated in a previous email. The other thing you could try is that may be coating the tongue with a little peanut butter to cover up those taste buds and mix the medicine in herseys chocolate syrup. For some reason the strong flavor the chocolate syrup the stuff in the can is a strong flavor. this may work. I know my son takes a chewable medicine that is suppose to taste ok but he always takes peanut butter first and then chews the medicine. Good luck and let us know what works. We all learn from one another. And also let us know if the ataxia goes down a bit with the taking of the medicine. Nerenhausen mom to Leah Cindy Cruz wrote: 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) Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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