Dear GA1 parents and families, I am so glad that the NY Times chose to run a letter yesterday from the medical director of the March of Dimes rather than...
Hi Patricia, My son Peter was diagnosed at 8 mos after an acute metabolic crisis. He is now 3 1/2 years old. He is now on a low lysine/tryptophan diet using...
Amen Mellisa! I cannot tell you all how grateful we are to have had Ayden diagnosed at birth through new born screening! When we first had the diagnosis, we...
Hi Melissa, I agree that these children need to be screened at birth. They didn't know everything there is to know about PKU when they first started screening...
Hello Melissa , Thank you for your response. How did the crisis affect your son. Is he doing alright now. you wrote that he started school,does he atend a...
Hello, One and All, I am wondering if any of you wonderful people know that there is a natural, or Naturopathic way to help your Children with this dread...
Hello, Please share your info with me. Kristy mother of Chloe 4 (GA1) ... Hello, One and All, I am wondering if any of you wonderful people know that there is...
Hi, I'm posting for the first time. My gorgeous little niece, Violet Ashleigh was diagnosed just a little more two months ago after a metatbolic crisis. She...
Hi, We live in Adelaide, South Australia. Like your niece, our daughter is the only diagnosed case in our state. Holly is now 3 yo and was diagnosed at birth...
Hi Jim, I just realized your email address shows up here in my Yahoo mail. I'm so glad your daughter was diagnosed at birth. It sounds as though her mobility...
Hello I know I don't write in often, but I really need some help. I am at a standstill with Charlene. We go back in the hospital tomorrow for further tests....
Debbie, I am so sorry to hear about Charlene's problems. It is a shame that you had to video tape it for the Doctors to understand the seriousness of the...
Hi Shantel I did send an email to Cay because I do remember when Michael had GI issues. I am hoping to hear from her soon. I feel very strong that it is GI...
I just wanted to say thanks to all of you who added some insight. The information is very helpful. I think it helps a bit to just know that there is someone...
Debbie, My daughter Lily has had the same type of fit as well. I know it is GI related for her. It seems because her muscle tone is lower in her digestive...
This message board is not intended to serve as advertising for any companies. The previous poster will be asked to refrain from posting solicitations....
Tera, This may sound weird, but is Saxon an Elliott, too? My maiden name is Elliott (my parents are from Oklahoma) and I wonder if we are somehow related (the...
Hi again, I'm posting to ask, no beg for help for my sister Janet and her baby Violet. They live in Western Australia and Violet is the only case in the...
Dear Carol, I am so sorry to hear what your family is going through. Sadly, a lot of it is familiar. My son Zach was also diagnosed at 6.5 months during a...
Hi Melissa.... Saxton's mother is an Elliott. I'm checking with my husbands mom to see where the Elliott line came this way from. He thinks it was from Texas...
Oops...It's Saxton's grandmother who is an Elliott. Still the bloodline though :) Tera ... From: meljoe_skidmore To: glutaric_acidemia@yahoogroups.com Sent:...
Hi Carol, My son Peter was diagnosed after a crisis at 8 months of age. He's three and a half now, so things are pretty settled for us now, but it definitely ...
Melissa, you make an excellent point about the pediatrician. Our pediatrician is really not involved in decisions about Zach's GA-1 and dystonia care--we rely...
I thought you all might want to know that the Organic Acidemia Association has put together a fundraiser for bracelets promoting Extended Newborn Screening. I...
Hi everyone We are HOME!!!! We have a diagnosis. (it only took 7weeks!) She has dumping syndrome. All this time, and the GI doc said hers was a classic...
I am happy for you and your daughter that you have found a diagnosis! You must be relieved! God Bless! Sarah thskiss84@... wrote: Hi everyone We are...
Thanks Sarah for posting the info on the fundraising bracelets -- they have arrived! I should have a link to the order form on the OAAnews.org website soon. ...
How many people in NC have GA1? I'd like to know if anyone near me have this and I'd like to keep in touch. I actually have an old friend from high school who...
