Hi Everyone! I hope that all your kids are doing well. I wanted to post real quick and let you know of a website I put up for my daughter's foundation, in...
Hi Sarah -- do you mind if I pass your website to the OAA listserv? I would also like to include in the OAA newsletter. You did a great job with the website...
I wanted to write and let you all know that Lily was admitted to Children's Hospital again this Monday. She has had what seemed to be flu symptoms for the...
Oh Sarah, I'm so sad to hear she's not feeling well. My son Marshall is just getting over a "silent" pneumonia (could not be heard by chest exam, only shown...
Dear Sarah, I sincerely hope that Lily is starting to get better, or is at least more comfortable - though it is hard to be comfortable at the hospital under...
Sarah, Just wanted to let you know Lily is in our thoughts and prayers also. I agree with what Melissa wrote about pain. The hospital should be using a FLACC...
Marshella, Thank you very much for your informative e-mail and for the donation to Lily's fund - VERY kind of you! I will certainly talk to the doctor's about...
Melissa, Thank you so so so much for all of your advice! I will keep this in mind for the doctor's as well. It is wonderful to have your help! I will be...
Hi - I received permission to pass this message on from the Saving Babies Through Screening listserv -- Looks like the March of Dimes is going to help move NBS...
How is everyone? I am the grandmother of Ayden Hill and he was diagnosed with GA1 around 6 weeks of age. His story is posted in here somewhere. I was checking...
Hi Vicki! I am glad your Grandson is being taken such good care of! I have to say that in my community, it took awhile before people really understood...
Hello everyone. Charlene had a new baclofen pump inserted, and bilateral hip abductors lengthened on 2/2 and we've had nothing but problems ever since. First,...
Hi Debbie, I'm sorry to hear Char isn't feeling well. That must be awful for you to see your daughter in so much discomfort. Is it her distended stomach that...
The problem is, Char doesn't talk so we don't know what it is. Now, last night we held off on the antibiotic, and she did do better. Had a somewhat wet...
my son is 18yrs old in electric wheelchair with movements simular to celebral palsy, but is still healthy. he takes riboflavin, carnine, and 120 mg of...
Hi We have the baclofen pump for 4 years now. It has helped tremendously with Charlene's tone. I've only had a problem with withdrawal, but that was dealt...
SINCE MY SON,ANDY,IS 18YRS, I WOULD LIKE TO KNOW IF THERE ARE KIDS HIS AGE AND IF THEY ARE STILL HEALTHY?? OR HAS THERE BEEN A DECLINE OF ANY KIND?? ANDYS...
Linda, I don't know of any GA1 children of your son's age. However, there was a medical journal regarding a 40-something woman who was diagnosed with GA1. She...
I am brand new to the GA1 family with a nephew, Saxton, born 3 weeks ago. His grandma asked if I would search and see if anyone had helpful info on how to...
Linda - are you a member of the Organic Acidemia Association? (www.oaanews.org). We are also a parent support group that covers a variety of OA disorders, ...
Hi Tera. Heather's specialist always told us to put it in Tang. He says it tastes better that way. And she did drink it. However, with the age of your...
Hi Linda, My son Zachary has GA1, and is now 22.5 months old. He's been on an anticholinergic (trihexyphenidyl, brand name Artane) since December 2003 (he was...
Hi Tera, Saxton's pharmacy can probably compound the riboflavin with several different flavors (ours does). My son Zach has had banana and orange cream, and...
When Char was little, I use to mix it right in her cereal, with a fruit or vegetable. Hope it helps Debbie Ottinger Mom to Charlene, 12.5, GA1 [Non-text...
Tera, My grandson has taken riboflavin since he was a month old. He is now 17 mos old. He does not like riboflavin either but my daughter has found that he...
I am glad to hear that Lily is doing well now after finding what seems to be the right doctor for her. Ayden has a set of doctors at Duke that keeps a close...
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Feb 21, 2005 7:19 pm
Hi Linda, My son isn't a teen but I have been in contact with a teen who has set up his own website. I cannot find his address but here is his mothers...
