That's good. l wonder if it might depend on the severity of the damage each child suffers. Good question for me to discuss with our metabolic. Thanks ...
Just wondering if anyone has dealt with dumping syndrome. They have Char on a thickened formula (thick it), but it doesn't seem to be working. There is...
I have a grandson who was diagnosed at 7 days old from the newborn screening. Thank goodness Kyler has not had a crisis. He was in the hospital two weeks ago...
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lisasandoval@...
Apr 2, 2005 6:26 pm
Hi, I am Lisa Sandoval and My son Michael was diagnosed at the age of 14 months after crisis. Our story is posted on the IOGA and Savebabies websites. We are...
Hello, My name is Donna and I am from Georgia. I have a 3 year daughter who was detected through a FREE expanded newborn screening test. If the test was...
OOPS. This is Donna again. I forgot to tell you about Alli's diet. She is on a low protein diet. She is on Glutarex 2, riboflavin and carnitine. But loves...
Hi folks, My name is Cindy and my son Zachary was diagnosed with GA1 during a crisis at 6.5 months. He is a fraternal twin, and his brother Nathan is...
Wow, the twins nearly 2 already?!! HAPPY BIRTHDAY to Zach and Nate!!! ... Mars mom to Marshall, 5, unaffected, comprehensively screened aunt to Heather, 8,...
Hello, my name is Moniek and I live in Holland. My son Tim, 11 years old, has a low protein diet (normal -low protein- food) since they discovered GAI (15...
My son Jason is 16. He has an undiagnosed metabolic disorder. His neurologist said recently he always thought Jason had GA1. I've read alot about GA1 and it...
Hi Ronda, I know GA1 is detectable with Tandem Mass Spectrometry (the heelstick test). It can also be found through a urine organic acids test, and should be...
Hi I know the tandem mass and urine tests. Also, a skin biopsy I believe can determine GA1. My niece had one done when GA was a question. Good luck Debbie ...
We are considerign adopting a little boy age 3 from S. Korea. He has GA1 from what they tell me. He was diagnosed early on and has never had any serious...
Hi my name is Kristy and I have a 4 year GA1 child. We live near Fresno and Chloe goes to California Childrens hospital in Madera. If you are interested I...
Liza, I will not tell you that having a special needs child is not hard, but there are lots of kids that live past ten. Yes it is true that he could have an...
My daughter's name is Chloe and she was diagnosed at almost 3 years old. She has some motor delays and sometimes her speech is hard to understand but we love...
Hi, My name is Patricia van Dijck, My son Bryan has GA 1. It was discovered at 2 1/2 . He has a low protein diet, also gets carnitine and GA 2 mixture. We live...
I am with Kristy. I am the grandmother of Ayden diagnosed at birth with no crisis other than him being in the hospital with a virus getting his fluids and...
HI Liza, Adopting a child with special health care needs is a serious thing, and your family needs to decide if you all are up for it. That said, none of us...
Grandmother to Ayden Hill diagnosed with GA1 at birth through newborn screening... heel stick. We are in New Bern North Carolina. Around our area Ayden has a...
I commend you for having such a big heart in wanting to adopt such a child! GA1 works in different degrees in each individual. It can be serious in some and...
I agree absolutely with everyone. It is hard, it is also an emotional roller coaster at times. At the end of the day, when I think about everything my...
Hi All, My daughter Lily was diagnosed with GA1 on the week before her first birthday after a seizure that caused severe brain damage. I don't have much time...
Hi all, I found this web site only yesterday and read all the messages you have posted, some making me cry others making me smile - I am overwhelmed with how...
Hello Fatma, It was so interesting and sad, too, to read your little girls story. I'm so sorry that she got so sick before they could diagnose her properly....
Fatma, Welcome to the group. I am sorry you have had to experience such pain with your little Leyla. I understand you and know that others in this great...
Fatma, I have a 4 year old that has GA 1 her name is Chloe and I believe with all of my heart that a low protein diet is a key factor in their health. Most of...
Hi folks, Has anybody out there tried Sinemet? It's used to treat dystonia, and it's standard of care with Parkinson's disease. We are considering a trial of...
dear cindy, my andy (age 18 yrs) seems to have gradually increased dystonia. he is on baclofen,and just starting artane about acouple months ago. he had...
