Hi Melissa, My Jayden goes through this alot too. I find he gets worse (the vomiting worsens) about one week before a cold/flu/virus will show. He will start...
MY GRANDSON ,KOBE HAS A MICKEY BUTTON. HE GOT HIS BECAUSE OF REFLUX. HE TO THROWS UP IF HE MOVES AROUND TO MUCH AFTER HE GETS OFF HIS PUMP. HE'S 16 MON'S OLD...
Hi Melissa, My names Fatma, mother of Leyla now 3. Leyla has these sickness spells that were the worst thing you could experience. Nothing would stop rthem,...
My son Shelton is also 16 months old. He has had his G tube since he was 8 months old. He vomited daily and constantly until the DR finally put him on Reglan...
I was wondering if you would be willing to look up one of those guides for the protein for us as well. I feel like Shelton's DR's are sometimes unwilling to...
Hi, I am Wanda. I live in Indiana and my son Shelton was diagnosed at 8 days old with ga1. He has since been on a low to no protein diet and at age 16 months...
Hi Wanda -- have you checked out SHS's website - they have a nutritional calculator and you can type in any foods and it will give you protein/amino acid ...
Hi Wanda, My son Carson was diagnosed at 7 days as well and he is 16 months. His birthday is October 27th. We live in northeast Ohio so we aren't too far from...
Hi again Melissa, I guess somehow I was asking the wrong person about the questions I sent to you. I looked again and it was the person you originally emailed...
Thanks - no I wasn't aware of it. I will check it out. Wanda Kathy Stagni <oaanews@...> wrote: Hi Wanda -- have you checked out SHS's website - they have...
It's been a while since anyone wrote about GA Type 2, and I'm wondering if anyone knows of any groups related to that type of glutaric acidemia. I had a son...
hi there, Im so sorry for your loss. This is the only group that i am aware of as GA2 is quite rare. If ever you need to chat feel free. Remember too, that...
HI mdawson, I'm so sorry for your loss. GA2 is a fatty acid oxidation disorder. There is a support group for that group of disorders www.fodsupport.org ...
Hi - yes the FOD Support Group also has a listserv -- you can sign up on their website http://www.fodsupport.org. The Organic Acidemia Association and the FOD...
MY grandson KOBE IS 19 MON'S OLD .HIS BIRTHDAY IS OCT.27 2004. HE IS WEAK ,ISN'T ABLE TO DO ANYTHING , BUT ROLL TO HIS SIDE .HE HAS THE MOBILITY OF A 2 MONTH...
Hi Chantelle, Sorry it has taken me so long to respond. We had Carson in the hospital for vomiting. We came home 3 days later and then 2 days later he was...
Thanks Fatma, Thankfully Carson's vomiting subsided. It is always shocking to me how long it takes to get him back up to tolerating his normal feeds. He...
Thanks for your advice Wanda, We have had to slow down Carson's feed to smaller bolace feeds and then continuous at night. The longer feeds can be complicated...
WOW Wanda, When I read this email I felt like you were discribing my last year with Carson even down to the RSV. Carson is on Glutarex 1 and Profree too. I...
What a great grandma you are asking for advice for your sweet grandkids!! I don't know of any other families in my area that have kids with GA so this is such...
My 17 month old Shelton, is on different formulas but how we give it to him is by mixing up an entire days worth. We add the ribuflavin to the mixture. He get...
THANKS FOR THE ADVICE ABOUT MIXING THE RIBOFLAVIN WITH THE GLUTAREX. BOTH KIDS ARE ON OVERNIGHT DRIP BAGS, SO I'LL HAVE THEIR MOM TO TRY THIS.They go to DUKE...
Hi Melissa, I am also a member of this forum, and just haven't been on much lately. I haven't read other responses to please excuse me if I'm repeating an...
Hi Wanda, Thank you so much for posting about your Grandchild. It's always interesting to hear the different stories and success's for each child with GA1. My...
Thanks Sarah, I have to tell you that when Carson was diagnosed, your website was the first information I saw on this disease. What a sweet little girl you...
I'm sorry, one again, for my late reply to your message. I haven't been on the forum in a long time and just wanted to catch up. Lily was taken off Riboflavin...
Melissa, Thank you for the note on Lily's website - that's really neat to hear that it was the first sight you saw. I hope there was enough information for...
Hi everyone! I have a 2 year old son Brett who has Glutaric Aciduria Type 1. Brett was diagnosed back when he was 3 months old after having a bad seizure from...
This sounds exactly like our life. The crying out bursts I think just because of the conversation that was going on and his reactions are him trying to ...
Hi Jennifer, Some of what you are talking about sounds like my Lily too. She also has crying fits from out of nowhere and I started noticing that it was...
