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Erika_B

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Reply with quote  #1 
Hello all--We took our son to a gastroenterologist last week and got the phone call yesterday that his initial blood work showed nothing of concern to the doctor.  Now we have an abdominal ultrasound and an upper g.i. scheduled for a week from today.  I'm wondering how much testing did you have to go through to get a diagnosis of CVS? How many of you or your children had to have more than an ultrasound and upper g.i. and go through more (motility testing? endoscopy?) 

What other means of testing and ruling everything else out are there? 

Thanks for any information you can share.

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wynnak

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Reply with quote  #2 
Ginny, the other moderator, and I were just discussing this. If they add a brain mri to the mix, then you’ve covered the bulk of the important ones that the CVS specialists are recommending that you do to be able to diagnose it. That being said, each doctor seems to have their own testing requirements and may include more in the results of those tests. Mine had, in addition to those, allergy testing, barium swallow, abdominal CT, and I know I’m missing a couple..but yeah, blood for celiac, abdominal ultrasound (3) abdominal X-ray. Upper GI, brain mri, barium swallow... there was a day that they took 18 vials of blood from him when he had already looked so thin from being dehydrated that I was panicking.

I’ll add more later of I can remember them. The testing was hard and scary for my son. They would for the most part let me in the room . With the exception of the CT and MRI. cT I could go in juntil yhey has him selfless then has to leave. Mri that was almost the same, and our tech was wonderful.. talked to him the whole time, let me talk to him if he got scared, and hold him everything that was going to happen and asked when he was ready for it. So that was nice.

Let us know how it goes!

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Blynda
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ginny

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Reply with quote  #3 
The testing is important to rule out conditions that present similar to CVS.  Blynda's son had a kind of typical work up.  The Empiric Guidelines suggest blood testing during a cycle to check for a metabolic problem.  The NASPHGAN research paper has a chart to match symptoms to suggested tests.  Both can be located on the CVSA Web Page under the Research Tab.

There are kids who have had a kidney problem or appendicitis or mito disorders and a bunch of other medical conditions, all which have symptoms similar to CVS.  Motility testing can be important. 

Let us know how the testing goes.

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ginny CVSA Moderator
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abigaillinda

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Reply with quote  #4 
Hello, Erika B,

My now 20-year-old daughter has had numerous tests (numerous!!!!) over the last ten years.  She had a HIDAscan when she was 11 which showed a problem with her biliary tract, which is why she had her gall bladder removed.  But the episodes returned.

She's had an endoscopy, barium test, gastric motility test, ultrasounds (while in episodes), xrays, a liver biopsy, limited genetics testing, MRCP, MRI (while in an episode and while not in a episode), EUS, renal testing, and numerous other blood tests.  All normal.  Which is a relief because those ruled out certain diseases.  But not a relief because the episodes didn't stop.  She's seen pediatric and adult neurologists, endocrinologists, gastroenterologists, a cardiologist, mitochondrial specialists, gynecologists, and is now seeing a functional doctor and a nutritionist.

Dr. Boles did diagnose my daughter with CVS in Aug of 2017 (her first episode started in 2009).  So....  it can be a long time before a diagnosis.

Hold on to Hope even through the dark times.  It's hard, I know, but do-able with the right team of doctors and therapeutic meds and supplements.  I'm cheering you on.  
Hugs,
Linda


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