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ginny

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Posted Reply with quote  #16 
Dr. Thangam Venkatesan

 

Associate Professor of Medicine—Gastroenterology
Director, Cyclic Vomiting Program (adults)
Medical College of Wisconsin, Froedert Hospital East
9200 W. Wisconsin Ave.
Milwaukee, WI 53226
P: 414-955-6836
F: 414-955-6214
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ginny CVSA Moderator
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jaws

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Posted Reply with quote  #17 
Can any one help me find a  Doctor in St. Louis Mo my daughter has CVS and every doctor she see's don't want to help her Please she has been in and out of the hospital for about 5 years now and has 4 children to take care of I really could use some help thank you Jane
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ginny

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Posted Reply with quote  #18 

As required by the rules (we do not have permission from some doctors to publish their information), I sent you a PM with the names and contact information for two doctors in MO.

Good luck, I hope this helps.
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ginny CVSA Moderator
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SickSince2009

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Posted Reply with quote  #19 
I have been dealing with CVS since 2009, but it was 2012 when it got unbearable and I saw a doctor. Long story but short solution - I started taking **mg of prozac per day. It has been 8 weeks since a really bad episode. Minor ones are taken care of with zofran and butalbital/aspirin/caffeine. Only when I had a sinus infection did the the episode progress to dry heaves. Maybe it will work for others.
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joyce bolton
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Posted Reply with quote  #20 
I'm new to this forum and I'm writing this for my 27 year old son who is in the hospital for the second time this week.  He's been dealing with this for about 10 years, no diagnosis.
Does anyone know of a doctor in Minneapolis or St. Paul MN?  
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sandy farl
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Posted Reply with quote  #21 
Since going on ** mg of prozac, I have had no full blown attacks, only very minor headaches and one almost dry heaves session but I had a bad cold at that time..
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joyce bolton
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ginny

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Posted Reply with quote  #22 

I just sent the names of two doctors we have in MN.

I hope one of these is able to assist you.
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ginny CVSA Moderator
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VMcKee

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Posted Reply with quote  #23 
I need help looking for a doctor who knows whats going on in southern or or northern cali pls I have seen some of the worst doctors lately

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wynnak

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Posted Reply with quote  #24 
I have to share mine.. Especially after everyone on here was SO helpful while we have been struggling for help and answers during our quest for anyone to support and more importantly understand what we were dealing with.

UCSF.. University of California, San Francisco, Benoiff's Children's Hopsital. Every single person there was, supportive, helpful, KNOWLEDGEABLE, and had my son who had been vomiting for 13 weeks turned around and up and functioning on his own with in a couple days. It took a couple teams of Doctors to effectively treat him as he was SOOOO ill by the time that he was sent there. But he is continuing in their care and I am a) amazed at the results b) confounded that they are SO complete in their care of him and efficient in their handling of EVERYTHING c) confident that he will continue to thrive under their care. I have never had the pleasure of encountering a structured system such as they operate and think that it should be a system to be mimicked worldwide. If you are anywhere near San Francisco.. I suggest them. My son sees a TEAM of doctors at UCSF Pediatric Neurology. We live over 100 miles away from there.. but we will definitely keep taking him back to them. He has already had a couple follow up appointments, GI and Neuro, all I can say.. IS I LOVE THIS PLACE AND EVERYONE THERE!! 

And of course a follow up to everyone who helped guide us and everyone who maybe going through similar situations. Finding a good, supportive doctor is a huge step, but being an emotionally capable adult with the driving force of a dump truck doesn't hurt either! 
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Blynda
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lrhhhh

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Posted Reply with quote  #25 
I actually found our Nurse Practioner knows all about this syndrome and is willing to treat my daughter!!!! She is at the SouthPoint Clinics in Lafayette, Colorado, her name is Camile!!!! SO grateful!!!!
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Posted Reply with quote  #26 
Hi All: I have seen a lot of people in the Denver area looking for a doctor familiar with CVS. I would like to recommend my doctor, Dr. Erik Springer. He works for the Rocky Mountain Gastroenterology Associates. His phone number is 303-722-8987. He diagnosed me with CVS two years ago. I have found him to be a very caring compassionate doctor. I saw him yesterday, and he is willing to treat other CVS patients. I did not realize until yesterday that he actually treats several CVS patients already.

I have not responded to some of the usual treatments, so he did refer me to a neurologist to get other ideas for treatment. I am not as happy with the neurologist as I am with Dr. Springer, but he is definitely trying different treatments to see if I respond to anything.

I did have to submit to the usual tests that CVS patients have to go through to exclude other diseases. Lokking back on it though, it did not take a very long time for him to diagnose me. Once I was referred to him, it look less than a year to get diagnosed.

I hope this helps some people and you have a good experience with this doctor.
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Kate Schieltz
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Posted Reply with quote  #27 
Thanks for sharing Kate!
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Kim

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wynnak

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Posted Reply with quote  #28 
As a follow up to my January post,.. My son has been the best controlled yet by the doctors he sees at University of California San Fransisco. He sees Dr Adam Numis and Dr Amy Gelfand. Both who have given us permission to post about them on here. We have also already been introduced to the adult nuero that also consults on my sons case. As his case was so rare and complex that he has not only a team, but a following of very interested doctors on his case study. They are documenting his case very thoroughly for future cases that his might influence. But wanted to put out the names if his doctors. They have called on nights and weekends, they always have a second and third line of defense and first and foremost.. CARED about helping my son! Highly recommend them! We drive over two hours for every visit and I wouldn't change that for anything!
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Blynda
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Trisha

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Posted Reply with quote  #29 
Hi, my daughter has had CVS for three years.  Right now she is on her 15th day this episode.  The ER gave her a shot but refused any Narcotics (said very testy) saying she needs to see her reg. DR. who said she needs to stop going to the er and deal with this at home.  What is the best doctor in Mass. that I can go to?
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Patricia A. Hawkins
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Posted Reply with quote  #30 
u must find a list of dr's in ur immediate area that r on board w/cvs and take ur child to that dr many drs r reluctant 2 acknowledge cvs b cause they don't understand good luck my son is 25 and has been diagnosed w/it since 2011 although he has suffered 4 @least 5 yrs good luck!!
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donna golden
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