Neonatal Graves disease

Hello all!
I'm new to the group, and see that I may be the only one on this site that is dealing with Neonatal Graves disease. I have 6 children, the 3 youngest were born with Neonatal Graves disease. The two youngest were twins. We have had a few complications from this, as one of the Twins had stopped growing so we had to have them early. They were born 2 months early. I wasn't to scared as I had already gone threw this disease with my now 3 year old when she was born, and had done alot of research. I did however find that none of the doctors that were in my area(or within a few states)had ever dealt with this disease in this form before. I was lucky that I had a peds doctor that had seen it when my 3 year old was born. As for doctors that had done treatment on a pregnant mom for Graves for the babies when the mom was hypothyroid due to RAI, that was a whole new ball game for all of them. It was more guessing than anything. The treatment that I was taking stopped working about the same time the baby stopped growing and there heart rates started to ski rocket. By the time I went into the doctor two days before I ended up having them there heart rates were in the 200 range(mind you normal is 160 or lower). So they were born one was 3 lbs. 10 oz. and the other was 4 lbs. 3 ozs. They were in the NICU for 1 month, and now the smallest of the two(who actually was less affected by the Graves)is having complications for the Graves disease, and the other baby is not. She now has Craniosynostosis, and has had to have reconstruction on her skull. She may still be facing another surgery, and possiably mental retardation(mild). As it sits right now they are all in normal ranges for there thyroid(and have been for several months). Thank god this is a passing thing for them, well except the complications from it. They also have some eye involvement, but it is pretty mild.
I hope that I can connect with someone who has dealt with this disease, or is dealing with it, so that I can give them some insight and support for what they are going threw.
Anyone know anyone?
Valarie