Re: New to RSS Reply to Judith, Cara, , Jodi

[Guest guest]

Thank you all for your welcome. We will definitely be in Madison for

the get together. I will join Magic foundation before that.

Kedhar was a 28 weeker born at town Memorial (I used to work in

town). The twins were in the NICU for 11 weeks. He was

diagnosd with congenital hypothyroidism at 6 weeks and so we have been

going to Dr. Starkman every 3 months. At his 2 year appointment both

Dr S and our pediatrician noticed he had not gained much weight in the

preceding 6 months. This started us off on our rounds with the

specialists. We went to a feeding center, worked with a nutritionist,

saw a GI specialist, tons of bloodwork, x-rays etc. We still did not

have any conclusive diagnosis. Only the indirect growth homone values

seemed a bit low. We then did the growth hormone stimulation test on

July 28. Even that showed normal values but IGF-1 was a bit low. Dr.

Starkman sent us to Dr. Yeboa suspecting -Silver. Dr. Yeboa

confirmed it on Thursday. Both of them wnt us to get on GH.

Kedhar's biggest issues have been poor appetite and " failure to

thrive " . He does not require PT or speech. He does not have many

physical characterestics of RSS either. That is why we thought all

along it was a preemie issue.

I hope to get to know all of you more. I have many questions, ut I'll

save it for later in the morning.

Thanks,

Malathi