Hi Debbie, I was wondering how you know how much injury Charlene had during her crisis. I was told that the damage only occured in the basal ganglia. ...
I haven't looked at the site for aa few days, so I am catching up! Leyla is unwell again. Leyla used to grind her teeth terribly when she was acutely refluxing...
Hi all I have heard snippits of both Stem Cells and Deep Brain Penetration that may be able to help children with GA1 in the future. Has anybody looked into...
Hi all, I was just reading the posts regarding the teeth grinding, the sense of humor and belly laughs. All of which my son Michael 8yrs old does just the...
Oh Fatma, My heart goes out to you! We have all experienced some time or another severe illness in our GA1 children, please don't despair! We all have ups...
Hi Fatma, About the 3-week lapses... This is something we've been dealing with for a long time too, since Zach really settled down after his crisis. Zach has...
Hi Cindy Thank-you so much for sharing your experience, though this is horrific news if this is the way life will continue. What has your metabolic consutants...
Fatma I didn't think of this until just now. I remember when Char was about 6 or so she had these same type of episodes. We had a sleep study done, and a...
Just curiuos if this is Grace Fondacaro? This is Debbie, Charlene's Mom, we met at a GA social a while back. [Non-text portions of this message have been...
Corrina Charlene does the same thing with the arms waving and flailing!!!! She squels when it's something she doesn't like too. To funny!!!!!! Debbie Mom...
Charlene had an MRI, and a CAT scan. Also, I think PET scans can show better than both of the previous. The doc's gave me detailed pictures on what parts...
Hi Fatma, Please see comments below... Cindy ... None of our doctors have said that specifically, although nobody seems too surprised that Zach goes through...
Cindy, Thank-you for shining some light on this matter for me. We employ a lot of the tactics you try, and yes, Leyla sweats buckets especially when she...
Hi all, What do you do to keep your young ones entertained all day? Leyla cannot do anything independantly so she demands constant attention and play all day!...
Hi! I was wondering whether people would mind sharing pictures of equipment such as baths, bath supports, car seats, wheelchairs and even activities that they...
Hi Chantalle, My daughter Lily does pretty much the same thing. We recently received some equipment for her and I am probably going to ask the person who...
I am glad you have written. Do you live in Colorado? I do as well and know a couple of people you can speak with immediately to get more help and answers. ...
Wow - another Colorado Mom! I didn't know there were other children in CO with GA1. How is Corrina today? Sarah Kordis Mother of Lily, 2yrs old with GA1 ...
Cindy, Bravo! It must be a relief! Did Zach enjoy himself? He must have! Sarah Kordis Mother of Lily, 2yrs old with GA1 www.thelilyfoundation.org Cindy...
Chantalle, Lily grinds her teeth as well. When she does it, I lower her jaw and say a firm "NO" and that seems to work. She has been doing it less. I try to...
I am SO shocked! I have read most everyone's posts about the sense of humor our children have, and Lily is the EXACT same way! She belly laughs too when we...
We lived in CO but don't anymore, my husband is in the military so we move quite frequently. We are now in the Dallas, TX area but wouldn't mind getting ...
Hi group! I am not sure if I had at one time joined this group, but had I -- it was a LONG time ago. Some of you I know I have talked to before but thought...
I am taking Shelton to the hospital tomorrow for his G tube operation. I know most have you have already been thru this and worse. I just wanted to let...
Wanda, Shelton sounds like is thriving now. Our thoughts and prayers are with you through this difficult time. It sounds like he will do absolutely fantastic...
Sarah, Thanks for your reply regarding teeth grinding and car seats! We also hold Jayden's mouth and try to prevent the grinding and firmly say "no", but it...
Sarah, I am amazed at how similar all of our children are too! They are just too precious! Chantalle Mother to Jayden, almost 5 years old GA1 and Alyssa,...
Hi In small Denmark were we live we were only told to count the protein in the food, right now Thea is having 1 - 1,3 g. protein per kg. weight its about 20 -...
Hi Marlene and group! My daughter Emily, almost 10, eats on a feeding pump all night long. We didn't get the diagnosis of GA1 until she was 5 and she was...
