I hope your children's hospital will be able to implement an effective treatment
plan for your daughter....it is horrible to watch your child suffer through
this.

----- Original Message -----
From: Smoke
To: cyclicvomitingsyndrome@yahoogroups.com
Sent: Sunday, August 01, 2004 2:25 AM
Subject: Re: [Cyclic Vomiting Syndrome] Helllllp--getting very frustrated


hunny i have CVS and was just diagnosed in may and i have had it over 10 yrs
mine is the same dry heaves so powerful that it was common for me to pull or
tear a muscle and i cycle 2 times a week it starts in the early morning only
mine will last 1 or 2 days and durning a real bad cycle 5 or 6 and requires me
going to the ER for intervention
i belong to CVSA its an assoc of folks conected with CVS,either a CVSer or a
caregiver
go to www.cvsaonline.org
they may be able to give you the name of a doc that is good with cvs they
also have info for your GI or PCP , its a nasty illness i call it the illness
from hell
Good luck
Smoke

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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