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MiamiLargo

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Reply with quote  #1 
Are any adults CVS patients having successful treatment in Florida?  We are having difficulty finding doctors familiar with the illness or willing to expand beyond their specialities.  Thank you! 
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wynnak

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Reply with quote  #2 
Did you reach out to the cvsa office for a referral list? 
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MiamiLargo

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Reply with quote  #3 
Yes, I did, thanks.  

I was sent one immediately after I wrote.  Unfortunately the Florida options are very limited (three!) and include a doctor who he did see a few who did not seem very knowledgeable or help him.   So we are moving forward with trying to figure out insurance with some of the out of state adult experts.  Fingers crossed!
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wynnak

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Reply with quote  #4 
CVS aware physicians are very hard to find.. even harder to get on our referral list. Its' one of the we don't know they exist and they don't know we do. We have an outreach going on right now to add new physicians. We have added more than 10 doctors in the last two months. So we are excited!

Did you just get the adult list? Becasue here is what I have done, I get the peds list as well, then call the Pediatric specialist and ask who they transition their adult patients to. I have found several doctors that way. 

Other options would be to look for motility clinics, or Neurogastroenterologists near you. Since it is a brain gut disorder, they would be better. My son only sees a neurologist. Neurologists had more info then the GIs did when it came to treating CVS. The GIs helped to rule out other issues that could be involved.

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