Vicki, Wouldn't it be that they would need to do Extended Newborn Screening after the baby is born within the first three days? I don't know what they would...
Sarah, We have been told that the baby would be treated exactly as if it has GA1 when it is born and they would have the ENBS test rushed to get results...
I'm finally able to post. I've been reading the messages on this message board and I have to thank you all. I've learned a lot reading the postings. You see,...
Hi I was also tested at 1o weeks pregnant - but we got the answer 20 hours after the test was done, that the child was carrier but does not have ga-1, and now...
I am very curious about the genetic testing that everyone is discussing. I am 11 weeks pregnant with my 5th child. My 4th child which has GA 1 was a wake up...
we found out that my husband, myself and our first child are NOT carriers of GA1. After a year of fighting and pushing, we finally got results. i dont know if...
I had one more child after my second was diagnosed with GA1 they told me if I wasn't going to terminate the pregnancy if the baby had it then I shouldn't have...
Sorry it has been a while we moved into a better house for our daugghter to get around in the wheelchair and don't have internet there yet. Destiny has had a...
My daughters doctors were going toput our newest child on a special diet untill they found out the results but since I wanted to breast feed said that those 2...
We were also told that both my husband and I had to both be carriers and that we had a 1 in 4 chance with any child we had for it to be a carrier we were told...
Cyndi, Thank you for your posting. I can say for myself that I don't think you should feel guilty writing and nor should you apologize. Some parents on here...
Cindy Thank you for posting. My daughter, Charlene, has hit the puberty stage of her life. In the past year her symptoms of her menses are getting worse, and...
Hi Tracy, We are also hoping to move into a bungalow with no stairs suitable for moving Leyla about with lots of open plan space for wheelchair movement....
We had our genetic councilling today, and the CVs option was given to us. I was interested in the extended newborn sreening you have there in the states, but...
Hi -- if you check out OAA's website -- there are several links related to newborn screening. The private lab, Pediatrix has a link, and you could order a...
Hi Fatma, You can also order the kit from Baylor (a big University Hospital here in Texas). This is the lab that all my friends have been using until the...
Hello Wanda, I have a 5 year old son with GA1 and a 1 year old daughter in whom I was tested via CVS. I was tested at 10 weeks of pregnancy (very early). It...
Thank you. I thought CVS was the same as an amnio - at least the procedure part of it. DO you happen to know how much your son's genetic testing cost you, or...
Sarah, I was curious about your 7 year old daughter. Has she been used to eating a "normal" diet all this time? My little one is a lot younger, and we were...
Wanda, I live in Canada, so the CVS was all covered and paid for by our Ontario Health Insurance Plan. It didn't cost me anything. I personally thought it...
... pregnant. The doctor told her she would be refered to a geneticist around mid term. She is due in July. I dont know how they test and unborn baby for this....
Wanda, Yes,Katie (7) and Trey (16) too have both eaten regular food all their lives since they weren't diagnosed until October, 2004. Katie had always...
Survey Group Invitation Dear families and friends of the OAA, My name is Amanda, and I am a second year graduate student in the Genetic Counseling Program at...
HI, my name is WANDA,I have two grandchildren with GA1. WE live in a small town in ROBESON COUNTY N.C.When we first heard about this disease was when ALIYAH...
Hi, Leyla has recently been taken off Ribpflavin. Our Metabolic specialist, Dr Champion, said that 'recent research shows Riboflavin makes very little...
Hi Fatma: Alicia has been on Riboflavin for 17 years now - I'm not sure if it helps her or not - but we were initially told that it sometimes works with the...
Hi Sharon, We have just been looking at Alicia's photos, and she is just so beautiful. You should tell her from us. Its almost like how I would picture Leyla...
Hi Thea got Riboflavin for 5 days right after she got diagnosed with ga- 1, it didŽnt have any effect and the doctors told us to stop, and since then she...
Marlene, As you explain, Leyla is identical with the symptom you explain. Thursday, Leyla wretched a few times at nursery, I rushed her home to give her...
