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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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Emily67

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Reply with quote  #5 
MiamiLargo, I live in the Tampa Bay area, and recently took my daughter to see Dr. Brody Henkel in Tampa (he is on the adult referral list from CVSA). He normally only sees adults (my daughter is 17 and will be 18 in September) but he agreed to see her when I mentioned CVS. I can't tell you yet if he is any good until I have another visit with him coming up on August 10th. I'll post an update after that visit. But at least I can tell you that he is familiar with CVS, which I was very excited about because I am sick of being discounted by doctors just because they have never heard of it (and tell me "not to believe everything I read on the internet")!
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ginny

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Reply with quote  #6 
I just realized that the doctor who most likely saved my daughters life is now practicing in Florida.  I believe he is in Delray Beach, JFK medical.  He is an internist and although we did not have a CVS diagnosis, he was treating her in patient and out patient using the same protocol the CVS MD later suggested.  He holds a license in NJ, MA, ME, LA and FL (maybe more states).  We have not seen him for around 12 years.  We found him never hurrying us, compassionate, intelligent and approachable.

Bernard Perlman, MD
5352 Linton Boulevard
Delray Beach
Delray Beach, FL 33484

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Emily67

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Reply with quote  #7 
Thanks for the info, Ginny! I'm not too sure about this Dr. Henkel yet. If I'm not satisfied with him I'll look up your guy.
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ginny

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Reply with quote  #8 
And I don't know much about my guy in todays world. My memories of him are of a warm and caring doctor who spent endless hours working to help my daughter.  I do hope your MD works out for you.
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Emily67

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Reply with quote  #9 
Thanks, Ginny!!
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MiamiLargo

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Reply with quote  #10 
Thank you both!  We had another bad visit to the local ER yesterday, this is just nonstop these days!

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wynnak

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Reply with quote  #11 
Even our medical advisors are aware of how bad the experience in the ER can be. We are hoping that release of the Adult guidelines will help with that. Have you had an opportunity to look for a physician to help you? 
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MiamiLargo

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Reply with quote  #12 
We are looking everywhere.  We are trying to arrange for a phone call with Dr. V and the pain management doctor in the next couple of weeks.  We are starting auricular treatment with our amazing acupuncturist.  We have been in touch with Dr. Levinthal but are still collecting volumes of medical records.  We are trying to figure out beta blockers with the local doctors who by what Ive researched aren't dosing it at a level effective to make a difference.  We are - thankifully to this forum - looking for a neurologist who might have better access to the roots of the disease.  We are trying to find someone recommended to do CBT and EMDR for stress management as it's become clear that the PTSD and anxiety about the illness are real triggers.  We are trying everything we can think of!  We need to be able to handle this at home. 

Re: the Adult Guidelines, yes, please!  The ER doctor was treating my 40 year old fiancé according to the pediatric guidelines and left us with PDFs of the pediatric guidelines and what to do for a stomach ache.  Very not helpful.  She did not stop the pain or sedate him.  That said, the silver lining is she did stop the vomiting....if he lasts a day I will be impressed.  

Lastly, I'm realizing that the mystery of the disease may be also be more easily treated if it is addressed as "migraine" as that is more familiar to everyone and it seems many of the more recent meds I've been reading about - beta blockers, calcium channel blockers, anti-seizure meds - are also used in the more familiar world of migraines.  That said, we are also very concerned about the gut biome and all of the meds have significant impacts.  I'd like to think SmokeEater could be our model and am so sorry to read he's fallen back into a cycle - he was an inspiration for us!  
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wynnak

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Reply with quote  #13 
I got certified in CBT taking an online course. My son was at an age that is not typical for most psychiatrists or psychologists to focus on. There were groups for young kids, or adults or Families of Chronically ill. My son was an adolescent at the time and very few have that as an option for treating. The one person that we eventually got him to talk to for focusing on coping with being chronically ill, was wonderful until about the third visit and it all went south from there. She started telling him that she had to heal his past lives in order to help him in this one. SOOO... long story short, it was easier for me to take a course and help him than find some on to help him. The hospital Psych team that interviewed him, said he was an amazing kid and was very well rounded. Just sad over losing friends. But handling what happened to him very well and having supportive parents willing to take courses to help him.. they were just so excited. They even quizzed me on the course 😉 

Moral.. we do what we need to to live with this. Find ways around. Find alternatives. We don't give up.

Good luck!

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Emily67

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Reply with quote  #14 
I called the CVS clinic in Milwaukee and asked if I could get an appointment with Dr. K. They are supposed to send me a packet via snail mail to fill out and return to them. If we can get an appointment, I'm willing to travel there. On a positive note, my daughter had an episode while she was on vacation with her friend in Utah. Her friend took her to the ER there and they were actually NICE to her!! She went there two nights in a row. They called me to get permission to treat her, since she is a minor. They even followed up by calling me the next day to see how she was feeling and asked me if I had any questions about her discharge instructions. Maybe we should move to Utah!! :)
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