Thanks for the welcome. I have looked for a long time for a sight with valuable information and I think I've finally found it.
CCFA refers you to Dr. Pratt. When my son was first diagnosed last year, I called every GI in the Anchorage/Mat-Su area because Dr. Pratt couldn't see him for 3 months. No other GI's would see him due to his age. One GI would see kids at age 16. All others were a minimum of 18. Maybe we're unique up here?? I am being told this is due to 2 reasons; 1 being they must be licensed as a pediatrician to treat kids, 2 being the extra insurance costs to treat kids.
I have posted notices in Dr. Pratt's office trying to "recruit" other parents to join forces, and to share experiences. I have also drafted a letter to send to all the other GI's in the state to try to find someone else. Dr. Pratt says to not get my hopes up though.
I asked Dr. Pratt yesterday for a forwarding address for himself. He said as part of his contract with Providence Hospital to return once every 6 weeks for the next 8 months, he would not be required to stay in contact with patients so he wouldn't release this info. He said any communication would have to come from our pediatrician.
As far as liking Dr. Pratt, I think he's ok. But what other choice have we had? I have asked Dr. Pratt repeatedly about things I've read from other sights about the other aspects of UC like diet, emotions, etc. of which he discredits all of having much bearing.
We have seen slight improvement after the 2nd infusion, but doc says it should be working much quicker than this. I guess we'll wait more since he had another yesterday.
Signing off now. Will check posts this evening.