Just found out November 10th, 2000. But now there is a reason for everything. My baby is getting testing also, he is 20 months old. We have tried numerous doctors but none in our area are familiar with this disease. Up to this point school has been acceptable with low grades, now it is getting harder for him in the 8th grade.
Hearing is somewhat limited.
He is 5'2'' 103lbs. He has grown a lot in the past 3yrs until then very tiny. He was found to have a heart defect called truncus arteriosis, which means he only has one heart valve. He also has acid reflux, low calcium and immune system. He will have to have it done again when he is around age 3-5 years.