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ginny

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Reply with quote  #1 

When we find a doctor who understands and wants to help it is cause for celebration.  Sometimes those who do well leave the message board and someone from their area joins later and asks for suggestions on good doctors in the area. Maybe we can post the area and names of doctors and hospitals who have treated us well?

 

For our family we had excellent care through Dr. Athos Bousvaros, Boston Children's.

 

For adult care we had excellent care through Dr. Sonia Freidman, Brigham and Women's, Boston.


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ginny CVSA Moderator
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brandnewbie

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Reply with quote  #2 

While we are still only day 3 into her diagnosis, my 7 year old daughters Doctor is Dr Barry Lipschitz in Berwick, Victoria, Australia. He is a Paed GI and grew up with CVS himself. He has written resources also on CVS and follows the studies on it.

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hop

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Reply with quote  #3 
I'm new to the site but not to CVS. I've had it since 1996. I was about to write a small introduction of myself when I saw this question.

I'm in the Atlanta area and we have the most wonderful doctor who treats about 30 patients with cvs from all over Georgia. His name is Dr. Patrick Waring and he works out of Piedmont Hospital. After my first exam with Dr. Waring, I thought I could hear the angels in heaven break out in song! You mean, I had found a doctor who knows what this is and is successful in treating it!!!

Good Luck in finding a Doc.


Hop

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Peace, Patience, Preaching
H.O.P. (helping other people)
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ginny

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Reply with quote  #4 

SYDNEY AUSTRALIA

 

 "I was told about a really good doctor based there who apparently works magic on absolutely everything (I don't know if she can help with CVS but her name is Caroline Hungerford if you want to see her...shes written a couple of books about maintaining good health)."


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ginny CVSA Moderator
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ginny

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Reply with quote  #5 

"PS those who are looking for a dr/hospital in Oregon I went to newberg Providence hosp in newber or FABULOUS PEOPLE!!!!\ "


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ginny CVSA Moderator
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dharrison

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Reply with quote  #6 
In Topeka Kansas, we have had great luck with pediatric neurologist Dr. Daniel Katz.  In addition, at Stormont Vail Hospital, we have had an overall good experience with the Emergency Department and Pediatric ICU and Pediatric Floor. 

The hospital Pediatric staff were the ones who first suggested a possible diagnosis of CVS and got us connected with the specialists (local neurology and national consult with Dr. Li in Milwaukee).  We have had to train some of the hospital staff on a CVS, however they are very open and willing to work with us and to follow the protocol from the outside specialists.

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Darrin.
(Father of Lily, born in 2005, Treated for CVS Since Oct 2007)
(Husband of Michele, Father of son Kiel, born 2008)
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RobinD

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Reply with quote  #7 
Hate to be negative on this positive post, but we actually did not get help from Sonia Friedman.  We went to her during our darkest moment.  Dave was literally dying.  We went to her and she prescribed Thorazine.  I clled her a couple days later.  I left messages and didn't hear back for a few days.  When I did hear back she said to us- "I am sorry , there is nothing more I can do for.  I can not help Dave."
Well that was a heart breaker. We were devastated and felt utterly alone. This was before we knew of this site.  We researched CVS and found Dr. Fleisher in Missouri and we immediately flew out there.  He was there for us.  He helped us out of that dark hole we were in .  So I know Sonia has helped others on this board, but she was not there for us when we needed her.
Of course you have to try - so don;t let this discourage you from her- just my 2 cents!!

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dbintliff

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Reply with quote  #8 
Looking for a Dr. to help me with my 9 y.o daughter with CVS.  I live in South Texas so SA or Houston would be closer,

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Delia N. Bintliff
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melyssatwin

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Reply with quote  #9 

Dr Azcona in toronto ontario 416- 586-4800 ext4223 


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i will never let cvs take over who i am
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Moody_Blue

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Reply with quote  #10 

I found Dr. Krishnamurthy in Seattle, WA was awesome, she was the inital Doctor to finally diagnose my CVS. 

 

I have since moved to Olympia, WA & have another great GI Dr. Kruideiner, though he has since retired. I am now working with his  P.A. Hanson who has taken over his case load.  Both have been really great with listening to me & taking time to address any & all concerns.

 

I also have a really great Primary Dr. Schofield with St. Peters Family Medicine Eastside Clinic that works with me as well.

 

But I also work with several other medical teams as I have Fibromyalgia, and Ankylosing Spondylitis, on top of the CVS. 

 

I guess I am lucky to have found one of the best medical teams in my area to work in collaberation with one another to treat my conditions, so that I have a better chance at daily function to a certain extent.

 

Though I am unable to work as of 2008 I am now receiving all the medications & treatment to help manage my conditions on a more tolerable level.

 

I am available anytime for support to anyone that feels like they need or want to vent.


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Moody_Blue (Marie)
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harrispatrol

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Reply with quote  #11 

In Spokane, WA...Sacred Heart Doctor's Building-Dr. Wichit Srikureja (GI) has been outstanding!  He worked at Loma Linda and Mayo Clinic before and seems to be well versed on CVS.

Dr. Heather Stortz, in Tonasket, WA, is my family doctor and has been a great advocate through this entire process.

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emnealon

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Reply with quote  #12 
I am wondering  if anyone has experienced with the Clinic for Cyclic Vomiting Syndrome in Ohio  at the Cleveland Clinic?  I called the number listed on the CVSA newsletter and was told I had the wrong number. I explained where I found the number and was Put on hold and told yes this was correct!?! I made an appointment for our 19 year old daughter. We live in Syracuse NY and it will be quite a Trip. We will see a neurologist Shelia Rubin at Willoughby Hills... Any information would be great. She has been to 5 or 6 different Gastro Docs. But has not seen a neurologist...Thank you
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rubia6399

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Reply with quote  #13 

My son is 12 and has been suffering with CVS for 9 years. We're in Long Island,NY and he has been hospitalized 4 times in the past 6 months due to his CVS and the extreme pain he has. Doctors put him on IV morphine and now have tried Oxycodone. The amount of morphine they give this 100 pound kid would knock out a 300 pound man and it does nothing for his pain. His new gastro states he'll become a heroine addict if they continue to treat him with morphine but could give me no other pain relief suggestions. I wanted to take him to the Cleveland Clinic but his insurance won't cover it. Does anyone have any suggestions on what to use to treat his pain? When he has a severe attack, he literally screams and cries in pain for 3 days. What can we do? Thanks for any help or suggestions you may give.

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OntCVSMom

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Reply with quote  #14 
My daughter is treated by Dr. Issenman out of McMaster University Hospital in Hamilton, ON Canada. McMaster accepts patients from the Hamilton, Niagara and Brantford area. Issenman is a pediatric GI. I should also add that McMaster has now changed exclusively to a pediatric hospital and no longer accepts adult patients. We have 3 years to find an adult doctor. Dr. Issenman indicated that his experience is that adult GI's want nothing to do with CVS patients. Their opinion is that they should be dealt with by neurologists. I am worried for the future....
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Kats2Boys

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Reply with quote  #15 
Hi everyone. I am Kat, and am new to this board. I wanted to post here as we have had pretty amazing luck with our son being diagnosed with CVS here in Austin, Texas, and so far, really like our Pedi GI doc.

Our son, who just turned 4, has had 5 episodes in the last 12 months, 4 of which landed us in the ER and admitted each time for a night in the children's hospital. A doctor AND nurse started talking about CVS during his second stay. Our pediatrician referred us to a Pedi GI doc right away for testing. We choose Dr. Robert Zwiener, who has been wonderful. He started testing and gave us an "order form" - a typed doc with instructions for the ER physcians the next time our son had an episode that took us to the ER. After another episode and more ruling out tests, Dr. Zwiener diagnosed our son with CVS.

BTW - we just had our fourth visit and admittance to Dell Children's Medical Center in Austin this past Friday/Saturday which led me to find more info. The docs and nurses there are really amazing and had all heard of CVS.

As a newbie to this diagnosis, I look forward to learning more from this board, and am thankful it is here.
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