Hi! I read your son's story and i want to say only one word: You must to be strong because, because i live in this nightmare also. My son is 6 years old and i...
Thanks you everyone for your support and information. We took Lucas to the specialist on June second for his biopsy. The specialist was very hesitant to tell...
*Please note, the sender's email address has not been verified. You have received the following link from oaanews@... ******************** If you are...
Hi my name is Kristy, I have a 3 year old who has GA1. I was just wondering if there were any parents out there that have a child who gets flu-like symptoms...
My son is 4y with GA1 and he has flu like symptoms all the time. One theory that my sons Dr. says is that with the reflux and the poor swallow phlegm and ...
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lisasandoval@...
Jun 25, 2004 5:29 pm
My son, Michael-3 (see www.glutaricacidemia.org/sandoval.htm), also get congested or has a "rattling" sound in his throat. He has seen a specialist,...
Where do you find these flavors for the Glutarex-1? I think it may be a nice change for my son. Does it have a special name or just get it over the counter? ...
43
lisasandoval@...
Jun 25, 2004 7:04 pm
The flavor packets are by Nestle and are added to the formula. My husband and I discovered them when we were trying to get the formula to taste better for our...
I am ever so grateful that the subject of congestion was brought up and an answer was given. This is something I can print out and give to her doctors at...
My sons Dr. said that GA1 is symptomatic. Meaning if it is under control with no episodes of acidosis or anything serious happening that he could live to a...
Dear Corrina, Thank you for that information. Sometimes I just feel alone and that know one understands. I am glad there is a group of people like you guys...
I know what you mean not even some family members understand what you are going through. Also I wanted to tell you that there is a family in Salt Lake City ...
I am sometimes worried about Chloe, but she has been remarkable. I just cherish every day that we have together and pray that she will grow to have a healthy...
What state did you have to move from and what state are you in now? Just for future information for us. Not that we have much control over that since my ...
hey, We lived in Oregon and had a really hard time with insurance and getting her supplies and also with SSI. We now reside in Ca and things have been pretty...
Being in the military we have been to many states and the funny thing is that Idaho is the best state so far. We have lived in UT which their license place ...
Arnold Corrina, My name is Cindy Hill and I have a 9 month old son with GA1. We live in NC. We have great help at the Duke Metabolic Clinic in Raliegh Durham....
Cindy, My name is Moniek and I live in Holland. I have a 10 years old son with GA1. Can you tell me the adress of the GA1 organisation website? Thanks, Moniek ...
Moniek, The address is http://www.glutaricacidemia.org you can also find it at the bottom of the yahoo groups page. Vicki ... with GA1. Can you tell me the...
I'm in Texas, too. We live in Austin, where are you? I know that there are two other kids in Texas (in College Station and Plano)- maybe you are close to one...
I hope some of you got to see the report on Newborn testing on they Today Show. You might want to check out their webiste. www.msnbc.com and follow the links....
Oh I'm so glad you posted this. It reminded me about the show. So I went to my TIVO, and found it wasn't there! My husband had set it to record "MSNBC news...
AMEN!!!!!! Such a cheap test! Maybe if they compared the cost of the test to the cost of taking care of a child with major disablities, they would see the need...
When my son, Michael, was diagnosed 2 years ago - I began a letter writing campaign - writing to anyone and everyone from the media to local groups to...
I know that in Mississippi, the only state where they do a complete newborn screen, the change was brought about through the tireless efforts of some committed...
Thank you for the comments Melissa, you can read the article I wrote at www.savebabies.org, click on family stories, then click on Michael-GA1. As for my...
I feel for you in the US. We live in Australia, in one of 3 of the 8 States that has mandatory testing for GA1 and other disorders. My daughter Holly is now...
I would also like to read the letters and copy them if it is ok. I had gotten a lawyer and tried to sue the Dr. that misdiagnosed my son the Dx was hypoxia ...
If you missed this morning segment on NBS on the Today Show - it is now viewable on the MSNBC.com website at: http://www.msnbc.msn.com/id/3032633/?ta=y Scroll...
OMG, Lisa, Michael IS growing fast! Yikes. I can hardly picture a kid that big being only 3. Wow. Glad to hear he's doing well and getting around! For...
