My Sarah is 7 now and has had CVS since she was 6 mos old , not diagnosed till
she was 4 and the latest ped neurologist just happened to get a grant
application for it and said , I have a patient with that !!! She has an early
morn awaken , usually 5 am , has a preday , full blown vomiting day and recovery
day every 5 weeks which have just recently been lengthening to 6 to 8 weeks in
between , before it was like clockwork......she would vomit 40 ot 50 times in
the morning with yellow bile prior to using Zofran for the vomiting which melts
under her tongue so she can get it into her system quick , that makes it about
10 times for the whole day instead.....she does not have a headache either ,
she is dizzy though and lethargic , sleeps a lot and will suddenly wake up okay
and hungry as well but with some residual dizziness the next day.....We tried
all the migraine meds which didnt work ......cyproheptadine did nothing. We
just started Ativan during an episode which will at least
make her sleep through it and miss the misery of it and also works as an
antiemetic......We have found no meds that work as preventative, I dont think
there are any that I have heard of so far....no one ever seems to have any
......there is a girl in Sarahs class who oddly enough also had CVS and she went
into remission last yr with the episodes and now she is getting migraines.....so
who knows.... I am hoping with the lengthening between episodes that maybe hers
will go into remission......Symptom management seems the only way to go that i
know of at this point.....we went to the CVS walk in Connecticut and no one
there had any suggestions of what worked also and I talked to the President of
CVSA so I have no great hope for prevention .....support and symptom management
seem to be it....good luck to you.

"mpizey@..." <mpizey@...> wrote:
Hi Jen and all -- I'm new to this group too, and haven't posted an intro yet- My
son (3 1/2) has a VERY similar symptom picture to your daughter's current
pattern- and he has recently been diagnosed with CVS which began before he was
one year old (process of eliminating other disorders thru testing)-- He also
awakes in the middle of the night/early am- every 5 weeks (plus or minus 3
days)-- not only does he vomit yellow bile- but brown blood? many times an hour-
episodes lasting at least 24 hours (not vomiting continuously- but everytime he
drinks--and sleeping in between) and sometimes 4 days before he appears normal.
He is currently on Cyproheptadine (an antihistamine)that supposedly is effective
for some with CVS-- but I'm not convinced it is helping (at first his episodes
appeared somewhat shorter with meds..but last 2 were long again). We are
considering accupuncture...Has anyone tried this treatment? Any other treatment
suggestions? Also my son often ends up with a red cheek
after episodes (from the acid?)- and today has 2 very red bumpy cheeks from his
episode this past week? Anyone else? and any suggestions for treatment? So sorry
for all of us affected by this! but glad to find you...(I now know there is a
group for everyone:) Thanks, Mimi


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