My 6 yr. old has had CVS since she was 6 mos old , at first we thought it was
seizures , then migraines , at 4 she was finally diagnosed with CVS .....it is
such a bizarre type of disorder as they are totally well in between episodes .
Sarah has early morning episodes , on awakening , she will have a preday where
she is sick till about 11 am then totally better , then a "full blown" day where
she is sick all day , used to be she would vomit 30 to 40 times in the span of 3
to 4 hours , just continuous yellow bile , and she would be dizzy , lethargic ,
and non functional , the 3rd day is recovery day where she is still dizzy at
times if she moves too fast , by the end of that day , she is back to normal.
Needless to say , she misses a large amt of school due to this but I guess we
are somewhat lucky that her episodes are monthly plus 5 days , like
clockwork.....She has been on SO many migraine medicines which did nothing and
various others like compazine , periactin, verapamil,
elavil, probably about 10 others .....but now she is on nothing as we exhausted
all of the possibilities . The only thing that helps her is a med. for vomiting
called Zofran which is a med . they give chemotherapy pts. for controlling
nausea. At least we have cut down the vomiting to about 10 times total for the
full blown day . It works better when you can give it in advance if you know it
is coming or is likely. There is a hospital unit in Chicago for CVS specifically
, we havent gone there yet as we pretty much just ran out of our med. options
with our neurologist. So I dont know if it is worth it or not. She goes for
MRI's periodically to make sure she is clear in that way.....Now we just plan
around it and live with it....she takes it so well , not knowing any other way.
She does get mad at it sometimes , especially when she missed Halloween one yr.
but I just dont know if it goes away ever, cant imagine it at this point and I
never see anyone write that they got rid
of it......or even that they really manage it. Go to the CVS website , it is
good for info. Let me know if you go to the Chicago unit.....I really wonder if
I should take Sarah there......Good luck.

hunny312001 <amy.moore@...> wrote:
Hi all, I am new to this group and a mother of a 7 yr old daughter.
I work in one of the top childrens hospitals in the country and my
daughter has been followed by our GI dept for about 6 months now.
And after many many tests they still dont know what is wrong with her
and dont seem all that worried as she is otherwise healthy and
actually a little on theoverweight side. I however am worried. I
have been looking up info and it seems her symptoms sound most like
CVS. She only (with one exception) has the episodes in the early
morning hours waking from sleep and with no warning. She usually
vomits/dry heaves for about 2-3 hrs and then falls into a very deep
sleep. This past year has been the worst and she also had problems
with this when she was 5. The vomiting/dry heaving is soooo forceful
it usually makes her bowels move. ALthough she has never complained
of a headache or any other aches and pains during or after the
episodes. The only thng that has come up in any of hwer testing is
some dysmotility in her duodenum and a prominent duodenal fold
(whatever thatmay be). So far she has been put on a 3 month course
of protonix which did nothing and then a 3 month course of
erythromycin to improve her motility which seemed to help but now we
have been off of it for almost a month and the other morning she had
a rather awful episode. So any advice or comments would be helpful.
I am so frustrated because it seems as though we will never get a
diagnosis as to what is wrong. thanks


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