I am a teen parent of twin boys with GA-1.It is very lonley on the west coast. i have not really found anyone close to me to talk to about my sons.They are 17...
I am a teen parent of twin boys with GA-1.It is very lonley on the west coast. i have not really found anyone close to me to talk to about my sons.They are 17...
Hi Erin, My name is Lisa, and my son, Michael, is 3. he was diagnosed 2 years ago at the age of 14 months after he went comatose. I am glad your children...
Hi Erin -- feel free to check out the Organic Acidemia Association website at www.oaanews.org We are a parent support group for a wide variety of organic...
This board has been very informative and a little scary. My son Lucas was born on 4-7-04 and after 3 PKU tests and 1 blood/urine test he is showing high...
Hi Mike - have you had a chance to check out the FOD Support Network (Fatty Oxidation Disorders)? GA2 and SCAD are considered an FOD and their website have...
Hello. My name is Cindy hill and my son was diagnosed at birth also. We were very worried when we started to get more and more information on GA1. (that is...
Cindy, Thank you so much for your response. My name is Mike Morici and my wife's name is Joanne. We live in St. Charles, IL a suburb of Chicago. I am going...
Hi Mike -- I'm not a medical doctor, but I do know that Glutaric Acidemia Type "1" and Glutaric Acidemia Type "2" are different disorders and treated ...
Hi Kathy, Thank you for your response. We have an appointment on June 2nd with a metabolic geneticist. We have previously met with him 4 weeks ago when the...
Do any of the children of problems with any bone marrow issues (anemia or neutropenia)? My daughter has bone marrow failure and I am aware of one other child...
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? ...
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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...
