Cyclic Vomiting Syndrome Message Board
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Rae

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Reply with quote  #1 
Hey everyone, I'm new here and admittedly do not know much about CVS aside from what I have found online. I had never even heard of it until I started researching my daughter's symptoms and then her doctor mentioned it as well. I'm just looking for any help or advice you may have.

About 8 months ago, my 8 year old daughter started having these random episodes of sickness. When it first started, she would go from being perfectly normal to vomiting in seconds and would usually only throw up once or twice and then be back to normal almost right away. After the 3rd or so time of this happening I began to think maybe it was a food allergy, so I began the process of trying to narrow that down (haven't pin pointed anything yet). As it continued to happen, her episodes seem to have gotten worse. She can now feel them coming on in the form of pain/cramps in her stomach, they include diarrhea, and both the length and severity of the sickness is getting worse. She also has begun getting extremely fatigued to the point where she doesn't even want to stand. It still is only happening about once every couple months or so.

I took her to the doctor twice. First time he suggested food allergy, which I had already been trying to pin point to no avail. After her episodes got worse and I took her back again yesterday, he suggested CVS. He recommended a **mg daily dose of amitriptyline, which I filled but have not started her on yet as giving my 8 year old anti depressant meds freaks me out a bit.

I am wondering- what are the normal steps to diagnosing CVS? They have done no tests on her up to this point, not even blood (she LOST her mind when they tried). Should I have scans/blood draw/other procedures done before assuming this is CVS and putting her on the meds? Honestly, any advice at this point would be super helpful-suggested diet changes/known triggers/suggested supplements, anything. I am taking the time to read through your previous threads as well for any information.

Thanks so much
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ginny

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Reply with quote  #2 

There is no city of state in your registration so I am not sure if you are near a major medical center.

If you email the CVSA office they will send you a list of doctors in your general geographical area.  There doctors will have some experience with CVS.

Ami is the post commonly used preventive med but it is also a fairly heavy duty med.  Some kids do ok with periactin which is used up to around age four (but continues to help past age four for some kids).

I don't think CVSA would suggest a diagnosis with no testing.

Our web page has changed and what I am seeing is the Empiric Guideline, what I consider to be the most basic helpful information, have been removed.  Try a Google Search for David Fleisher, Empiric Guidelines for CVS.  This link might work:  https://mospace.umsystem.edu/xmlui/bitstream/handle/10355/5142/EmpericGuidelinesCyclicVomiting.pdf?sequence=1&isAllowed=y

and also click here:  NASPGHAN consensus statement for the North American Society of Pedi Gastro Hepatology and Neurology paper.

Our new web page seems to be missing lots of helpful information and hopefully this is temporary.  You might also check out Mito Action for doctor interviews, hints, testing, symptoms.

I would probably want to have testing done, some testing is best during a cycle and other tests can be done regardless of in or out of a cycle. 

Her episodes might be manageable with treatment possibly to prevent a cycle as soon as you see the symptoms and if she does progress into the cycle, treating the symptoms.  She is not cycling terribly often right now and you might not be comfortable with daily meds.

Please check the message board (and hopefully the web page) for the Supplements the tend to help many in CVS management.  Always check with the doctor even for over the counter supplements.  If you do try them, be sure to buy the highest quality you can.  Epic4Health has pharmaceutical quality offered at a discount (you need to start with a call and say she is being treated for CVS).

It seems that some do best with a Gastro Neurologist for developing a treatment plan and testing. Others are ok with GI or Neuro or their primary care( pedi/ FP).

Although frequently hospitalized, my daughter did not take prevention meds.  She did try ami but it gave her nightmares.  We managed with admission upon vomiting blood and conscious coma.  

Hormones often play a part in CVS and at age 8 she might be getting ready for puberty.  Some are calendar kids-- they cycle every 35 days or 14 days or some kind of pattern.  You can watch for this.  There is a journal on the CVSA web page that can be helpful.

Please let us know how she does, if you try the ami or supplements, if you see another doctor, and overall how it is going.



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ginny CVSA Moderator
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Rae

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Reply with quote  #3 
Thank you so much for all the info! We are in Winston Salem, NC. I will email the CVSA as you suggested. Good to know about the journal. It almost does seem that she may be on some sort of cycle. It also always happens in the evening, aside from the last episode which started around 5am. I have tried to look into what type of testing is done to diagnose but seem to keep seeing that it is mostly symptom based diagnosis, is this correct? Again, thank you so much for the information! 
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wynnak

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Reply with quote  #4 
The empiric guidelines are part of the new patient information on that tab on the page. http://cvsaonline.org/wp-content/uploads/2019/02/cvsa-info-pack.pdf I suggest looking through a lot of that information for new patients. You can also request a physician list on that link.
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ginny

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Reply with quote  #5 

In order to diagnose CVS other conditions with similar symptoms need to be ruled out.

We have heard from those diagnosed with CVS and later found to have waxing and waning appendicitis, Addisons Disease, UPJ obstruction and even something as simple as reflux.  When my daughter was being diagnosed she had a brain MRI, blood work, ultra sounds, endoscopies, swallow tests and probable additional testing.  

She was very classic CVS.  She had what seemed to be a typical CVS cycle and instead this turned out to be a major medical emergency requiring transport out of our community hospital system.  Had I kept her home and medicated her, I don't think she would have pulled through.  The only difference, for her typical symptoms, was extreme abdominal guarding.  She usually had her belly pain near the umbilicus and not to the side.  

As she was "one of the first", it took around 20 years for an official diagnosis.  

The NASPHGAN guidelines have a match up between symptoms to suggested tests.  This can help prevent unneeded testing but some doctors will probably still want to run additional tests.

Wynnak, thanks for the link.  I looked twice and had no idea it was immersed into the New Patient area on the web page.


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ginny CVSA Moderator
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Rae

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Reply with quote  #6 
Wow. Thank you all so much!! This has been so stressful for both of us and it is so good to get some feedback and info from folks who have been through similar situations. Everyone I know personally that I have spoke to about this has never even heard of CVS. I really appreciate your help!  
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