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mickey134

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Reply with quote  #1 
All:  My daughter has been struggling with undiagnosed CVSA for approximately 10 years - symptoms started when she was in college.  After repeated ER trips, and many multi-day "episodes" a year, we were losing hope that anything could be done for her.  Somewhere along the line, an ER doctor mentioned the words "Cyclic Vomiting" but all inquiries about what to do with it and where to go for help ended with no answers.  Most of the time we were just told that she should see a Psychiatrist - it was very frustrating.  Test after test after test - GI, endoscopy, colonoscopy, etc. - all had normal results and the doctors said there is nothing wrong with her. 

During a recent episode in March of this year, as she lay in the ER for another day receiving anti-nausea treatments and fluids for dehydration, I started Googling and found THIS WONDERFUL ORGANIZATION.  Reading the blog was like taking the many pages of our 10 year history out of our very own book.  There were others just like her.  That, in and of itself, was comforting.  Also, finally finding a resources that had helpful hints and ideas that might help thwart an episode or perhaps help in prevention has been inspiring.  We actually stumbled across many on our own, and now others' stories confirmed what we were learning.   

And MOST life changing, is the fact that this organization provided a list of medical doctors who specialize in cyclic vomiting.  I am lucky enough to live in PA and we just saw Dr. Levinthal at the UPMC Medical Center yesterday for our first visit.  THERE IS HOPE!  We finally sat in front of a doctor (mid-episode I might add) and got clear explanations, understanding and multiple ideas for treatment, management and prevention moving forward.  I commend the entire organization for your focus on this debilitating condition.  I had never heard of it prior to this experience, but because I now understand the magnitude of it's impact, I will whole heartedly support your organization and your efforts in helping people connect and learn about options and have access to additional resources.  I also can't say enough great things about Dr. Levinthal, his PA Caitlyn, and the ENTIRE STAFF of UPMC.  We were treated wonderfully with respect, understanding, and extreme care for the first time and left finally feeling like there was help.  We traveled 4 hours one way and waited quite a few months to see Dr. Levinthal - If anyone is wondering if going to an expert is worth the travel, trust me when I say that if you have ANY WAY to make it happen, IT IS!!!!  After meeting, he is now a part of our care team and can work with us and our local doctors over the phone or however.  We couldn't be happier. 

Thanks again - I hope that these words give hope and guidance to others. 

Kindly, 
Sherri


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wynnak

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Reply with quote  #2 
Sherri, 

Thank you so much!! Dr. Levinthal is wonderful isn't he? He will be presenting at the conference that we have coming up in a few weeks. I'm excited for it. Worth the trip to Milwaukee for it.

Thank you for sharing your experience. It is so wonderful to hear when people find the help they need. I'm glad that we were able to help you out. 



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Blynda
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ginny

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Sherri, Thank you so much.  When I wonder who we are reaching, if anyone, reading comments such as yours make me realize the volunteer hours required to keep the message board running are well worth it.

I hope your daughter finds answers and does well.  I think we were 19 years to a correct diagnosis. We are now around 12 years or so in remission.  There is hope.

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wynnak

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Ginny,

You area right. Stories like this make all the time that we spend volunteering worth it. That one thing we did made a difference.

Thank you!

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mickey134

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Please don't doubt the positive impact that all of this has on the patient and families.  We have struggled alone for so long.....and this site and the resources have been a God send.  We have said many a prayer......and then we found you.  I don't find that to be coincidental.  Thank you for ALL you do, Ginny and Blynda! 
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ginny

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You are welcome and again, thank you for such an encouraging uplifting message.  Please consider the supplements, review with the CVS specialist of course, and hopefully the supplements will help.  Also to be considered is how the menstrual cycle affects her CVS episodes-- a journal will help.  Some females will not only be symptomatic during their menses cycle but also middle of the month. The fluctuating hormones can be a factor.  There is a lot of information, much of it excellent, posted by others over the years.

Finally, if you have not discovered the Empiric Guidelines and the NASPHGAN paper, as well as others, on the CVSA web site, please review.  The Empiric Guidelines is a basic and comprehensive guide, NASPHGAN is for pediatrics but the paper is generally very helpful and the charts will probably apply for the adult population when the adult study is completed and published.

Please keep us updated.

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ginny CVSA Moderator
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wynnak

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Reply with quote  #7 
I shared part of this with Dr. Levinthal as well. He was happy to hear it as well. 

But this is why we do what we do. We  struggled for help and stuff as well.. CVSA was always there for me. I'm just continuing that effort.

Thank you for sharing. Keep us posted. 

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