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...
Thank you to all who have sent me ideas to help Saxton! I have printed them all and gave them to his mom. She is hoping to get a computer soon so she can be...
We are so gland to hear Saxon is doing great. What state does he live in? tera_elliott <elliotts@...> wrote: Thank you to all who have sent me ideas to...
Good Morning Everyone, I just wanted to let you all know that I submitted a letter to the editor about yesterday's article about newborn screening. I feel...
Hi Vicki, Saxton lives in NE Oregon...in Joseph, quite a ways from Portland where the major medical help is available. They'll be headed back that way the...
Ayden lives on the coast of NC and his most wonderful genetisist doctors are in Duke which is 3.5 hours away.There, he also has a dietician and he sees a...
Thanks for the post Melissa. I felt pretty strongly about the article, and I sent my letter to the editor today. I am still flabbergasted that Dr. Fost has...
Hey Vicki, My daughter was not diagnosed at birth but she made it through 11/2 years without any problems and suffered only mild brain damage. This has cause...
Kristy, Your daughter sounds a lot like mine. Heather is now 8 and was diagnosed at 15 months old after a crisis. However, she has only mild impairments....
Shantel, I am glad to hear that there is someone else out there like chloe. I was wondering if your daughter had any problems during the potty training stage...
Kristy, I know what you mean when you say she is the light of your life. My daughter is the light of my life, too. These GA1 kids are so sweet and loving no...
