Wow! We are a quiet group. I hope all is well with everyone and their families this winter.
Just an FYI Sean has created a group on facebook, it is quiet like this group, but it is growing.
It looks like we has 15 members, please introduce yourselves if you haven't already.
My daughter is now 12 and her ornithine levels have gone up since summer. 350; 450; and now 650. She has just added creatine to her list of supplements because her creatine numbers are a 10% of the normal number. She is scheduled to see the geneticist next month, so i will take her to get her blood taken again soon. Hopefully the lab won't do the wrong blood tests again. Very frustrating...
JenD and AHH, sorry i never responded to your emails last month or so, I was having computer problems and lost all old email addresses.
Would everyone feel more comfortable to discuss issues and concerns if this was part of a private yahoo group or like forum? Trying to figure out a way we could support each other.
Thanks, Missy (mom to 4, 12 yr old girl w/GA)