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I am a parent of an 18 year old daughter - she has Cerebral Palsy, is non verbal, non ambulatory - has epilepsy.   She has suffered from CVS for 4+ years.  It took a long time to diagnose - as she cannot communicate the warning signs before an episode starts - 

Her vomiting cycle used to be every 3-5 months (vomiting on and off for 12-18 hours and then involving 1-2 nights in the hospital for fluids and Ativan) - and then she started taking Amitryptaline (Elavil) in 2016 prescribed by a GI doc here in Philly area.  Migraine trigger was our best guess.  (my husband suffered from migraines in his late teens/early 20's - but without nausea...)  

We reduced to only 2 episodes in 2017. Then out of nowhere - another one this week - just 3 months since the last one.

She is on a low dose of the Amitryptaline - so will be calling Dr. to see if we should increase.

Anyone out there with a child who is non-verbal and cannot communicate warning signs??  What other treatments have worked?

These episodes are extremely traumatic for our whole family - and esp. for my younger daughter (who is 14 now ) ..not that I have to tell that to this group!

THANK YOU and any advice is appreciated - I would like to consult an "expert" in CVS as well.


Posts: 4,447
Reply with quote  #2 

Hi Chris

Several parents of non verbal kids,  think this includes cerebral palsy, have posted on the message board over the years.

Try a message board search.

You might consider either a consult with one of the CVSA Medical Adviors (there is a list on the CVSA web page) or having your daughters daughter consult with a Medical Advisor.  You might also email the CVSA office for the most up to date list of CVS specialists ( in your area.

Blynda, message board moderator, has had the best luck with a neuro.  Another parent has her chllld being seen by a neurogastroenterologist.  Michael Gershon, PhD, MD, Columbia, ("The Enteric Nervous System: A Second Brain") was the first to link the Bran/Gut.  Columbia is not terribly far from you, and maybe being seen there could be beneficial.

Lots of people do not get a prodrome.  Some parents do note a pallor on the face, or pallor around the mouth, discoloration under the eyes, burps, acetone odor on the breath (I am told much of the population cannot detect this odor), impending or start of menstruation/hormonal changes, and other possible indicators of an impending episode.

Dr. V, adult CVSA Medical Advisor, has stated that the gastro track tends to run faster in those who have CVS but slows as a cycle approaches.  This could be a sign for you as well. 

Please stay in touch and let us know how things are going.

ginny CVSA Moderator
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