Thank you all for your replies and information.  What does it cost to go to NIH?  Do you fly or drive there?  We live in Omaha, Nebraska.  I see that they have family housing, is it free?  Is it best to go to NIH and do you have to be asked by them, how does it work?

 

We have our 8 year old that we have had to travel to different hospitals, effects from extreme prematurity, and we have had different arrangements each time.  He has a disability waiver though, and costs were minimal.  We will do whatever we have to do, but I am concerned about the money.

 

Do you have to pay for the Anakinra?  Is it covered by insurance?

 

Thank you for all your help, you are truly a blessing for me.

Kathe