Hello, my name is Jill and my daughter Chandler was diagnosed with GA- 1 at birth. She is now 6 months old and doing great. She was hospitalized once due to...
Hi My name is Josh I am a GA1 adult I have had GA1 from the age of 2 I am now 22 years old and am doing good. I live on my own now its pretty cool I a am gladd...
Hi Jill. I am Wanda - mom to Shelton diagnosed at 8 days old. My son turned 2 October 17th. He is still equivalent to a 2 month old physically. Mentally he is...
Hi - MySpecialDiet.com has a nutrient calculator that will analyze lysine - https://www.myspecialdiet.com/Manager/DietTools.aspx?c=NutrientCalculator ...
Hi Jill!! My son Cody was diagnosed at birth. He is now 13 months old. He is also doing very well. Although, we see a physical therapist once a month and...
Hello Jennifer, I am glad to here that Cody is doing so well, is he walking? It was so scary at first but things do get better everyday. My daughter Chandler...
Well, Cody is trying really hard to walk. He is cruising the furniture and the walls but is so scared to let go. He has taken maybe 2-3 steps alone, but like...
I bet he will be walking soon, and running all over the place. That is really good to hear. Chandler has had her blood and urine done, she has had it done...
I also stay at home with Cody. I only work 2 days a week in which my mother-in-law and my mom keep him at my house which in my opinion why he has done so well...
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Posey, Lacy
lposey@...
Nov 12, 2006 10:11 pm
Jill, My daughter was diagnosed at 2 weeks after an unexpected trip back to the NICU on the day of her release from her well-baby stay. She is doing great...
I have just come back from the orthopaedics Dr who has given me some really bad news, that Leyla's left hip is dislocating and the right one looks like its not...
pray for her is all i can say awwwww thats sad but god works every little thing out but i dont know i will ask my mom if she knows anything Fatma McCauley...
Fatma, This has happened to many of the wheelchair dependent kids with GA1. I cannot speak for them. I hope that they will contact you and help you with ...
Hi Fatma: Sorry about your latest news on Leyla's hips. My daughter Alicia, 19 yrs old now, had problems with her hips when younger (caused by Dystonia). Her...
Fatma, We too suffer from Jayden dislocating his hips. Unfortunately, I was given the same answer. We follow up with this each time we see the doctors and...
fatma, We have not yet had this problem with laila, but she also gets botox in her innner thighs to stop the dystonia in that area, she also gets it other...
My new site has a toolbar 2 ga1 chatrooms and a web messenger and a messenage bored and 2 Guestbooks and a virus scanner and spyware scanner and I ma working a...
Thank-you to everybodys advice and good wishes to our Leyla, we really do appreciate these warm words and helpful suggestions. On an update front, Leyla is...
Have any of you had trouble with limpness?Some days my grandson Kobe is very strong , he can stand up with assistance, other days he's as limp as a cooked...
Hi Wanda Charlene does get limp from time to time also. (even pre baclofen pump) Never any rhyme or reason to it for us. Debbie Mom to Charlene 14, ga1 ... ...
Hi Wanda, This is Shelton's mom. (GA1 born Oct 17th, 2004) Sorry to hear that Kobe has some bad days. Wish I could help but Shelton is pretty much always limp...
Hi Wanda, Kobe has been tube fed since last Christmas when he had his seisure in 05 .He lost his ability to suck his bottle.He was always throwing up and they...
