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Marniedev

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Reply with quote  #1 
Hello all-
I'm new here, and am posting on behalf of my 24 year old brother. He is currently in the middle of a 9 day episode, been to the ER 3-4 times for fluids, meds and lytes, and is still no better. Frankly, he's saying at this point he'd prefer to die. Does anyone know of any specialists in the Seattle area with experience treating this? He's seeing his regular doc today and I sent him with journal articles about treatment of CVS, but I'm not sure how helpful it will be.
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wynnak

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Reply with quote  #2 
Hi MarnieDev,

Thanks for reaching out. I am sorry that your brother has not found relief from his current episode.

Have you contacted the CVSA office for a list of the doctors in his area? Try emailing Debbie at cvsa@cvsaonline.org for a doctors list. 

I have heard good things about Puget Sound Gastroenterology in Fremont.. I don't know if that is close. But have at least heard they are knowledgeable about CVS. I would of course try Debbie's list first. I hope your brother's doctor can offer some suggestions and solutions for helping. Let us know how he does.

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Marniedev

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Reply with quote  #3 
Thanks so much. I will email her, and Fremont is very close!
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Alice

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Reply with quote  #4 
My son has suffered from CVS  over 20 years until the past year.  He was tested for food intolerance (Carroll Food Intolerance). http://www.windroseclinic.com/images/patient_manual_web.pdf


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Alice

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To complete my earlier reply:  He was found to have an egg intolerance and has taken that from his diet.  After repeated trips to emergency in many states - he has had almost a full year of relief.  When he does have an event it is so minimal and only because he has eaten something with egg that he wasn't aware at the time.  

His relief came within a very short time after eliminating the egg.  We are all surprised and thankful.  As his mother, it has been devastating to watch and this is truly a miracle.  Best wishes to all.
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ginny

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Reply with quote  #6 
Every so often someone who has been diagnosed with CVS, even if they fit the typical profile, finds that something else entirely has brought on their symptoms.  I have heard of waxing and waning appendicitis, addison's disease, and UPJ disorder.  UPJ is now one of the more common tests, done by ultra sound, to rule out a cause of the CVS symptoms.  

I am very happy for you that you found the trigger for your son.  I hope he continues to do well.  Egg is such a common additive, maybe he can carry an egg intolerance card for restaurants or times he is not with you but is going to eat?

So often when the person is no longer cycling we don't hear back from them.  Thank you for letting us know.  This might help someone else.

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s_tar

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Hi. So sorry this is extremely late BUT I saw your post and had to tell you. Dr. Sheldon Rosen at UW medicine has been incredible to me and he accepted my state insurance. I certainly hope you have found someone by now, but just thought I would throw that out there!
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wynnak

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Reply with quote  #8 
Thank you for the recommendations. There is a thread for doctors as well if you'd like to put it there as well.
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s_tar

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I will, thank you. [smile]
New to the site. So glad I found it.
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wynnak

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Reply with quote  #10 
This boards has been a tremendous help for me. The support, the archives .. those are great. I looked through those a bunch to begin with.

Glad you found us!

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Blynda
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