I need help figuring out where to turn/go next.

DammitJanet

Well-Known Member
He has to be referred to a pain clinic to get in...these guys wont refer.

Cory is so far from bending over it is pathetic. He looks like a little r, in order to pick stuff up he goes down with his knees and picks them up with his right arm. Thankfully his knees dont bother him.

I think I am going to look up a bunch of doctors and email them and see if they wont take him on.
 

Tiapet

Old Hand
Ok, if family medicine won't take him on, you still have the patient relations department to help you and they CAN get things moving in the right direction as well. They can also help with the records like I said. You can get them sent to the doctors you saw there (so they can see what went on and re-evaluate him again) and that won't cost you a dime (make sure you tell the patient relation person this as well, why you need them to see him again). Duke also has a pain management facility. Now I don't know if you do or don't have to be referred or not but it also falls under their Neurology department so you might be able to come at it from that perspective without a referral as well.

I can sympathize having to travel long distance for care, good care. Not now but in the past I drove 5 hours (6 in another instance) just because I demanded good, knowledgeable care. 5 hours weekly (one way) for middle difficult child for almost the first year of her life. I didn't trust anyone in the area at the time as I had been to all of them and also saw the work that was done. It got me/us no where and lots of problems (as well as many others). Sometimes, it's worth the travel when you know what you're getting is going to be worth it!

Don't give up, keep putting your puzzle together and build your village for Cory and bring in help (like the patient relations person- they also have social workers{not the kind you think of} there to help as well).
 

DammitJanet

Well-Known Member
Well...I believe they have a portion of the neurology wing down here. Maybe I can get him seen down here for the neurology part since we never saw them before at all.
 

witzend

Well-Known Member
Dr. Anthony Romeo at Rush University does Scapulo Thoracic Fusion. It's fairly common in our type of Muscular Dystrophy. He's the best in the nation. There's also Dr. Kevin Smith at University of Washington, who studied with Dr. Romeo. He did mine. I would contact Dr. Romeo's office and ask for a referral to your area. He'll know exactly what you're talking about and who you should take Cory to see.
 

DammitJanet

Well-Known Member
Witz...I was wondering about FSH MD when I started reading so much about this. Could he have this and no one have dxd him at birth? Maybe I should take a picture of him in boxers and send to you and you look at him and see what you think of him physically??? Could you tell?
 
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