Are you familiar with this condition?

[vlaffytaffy]

Are you familiar with this condition?  2 year old boy is the size of an infant, he weighs 11 pounds, his body stopped growing but his organs are still growing normally, he gets growth hormone shots  several times a week, he can not hold his head up, sit by self, stand, walk or talk, and is fed by tube in his stomach, family is trying to find someone who is familiar with this condition because doctors in mississippi  are not familiart with this, can you  point us in the right direction?

[vlaffytaffy]

No this is not my child, he is a friend, they live in mississippi, and doctors there are not familiar with his condition, his family is trying to find someone who can at least give his illness a name, do you have any contacts down there?

[Deanna L Aftab Guy, MD]

It is so hard to make a diagnosis without seeing a child, it sounds like you need to be sure that he is linked up with a Children's Hospital, if this is your child, be sure that a genetics metabolism expert is involved as well as a pediatric endocrinologist, if he is on gh then he more than likely has an endocrinologist and sitting down with them to understand what the concern is will help.