Hi, well depakote is a long term medication, basically he may be on
it for the rest of his life...I will tell you this though.. he was
having episodes every 2-6months, that would last 3-10 days...it was
horrible, it would happen in the middle of the night ussually, hed
wake up with sever fevers and nausea with abdominal pain... most of
the time he'd have the urge to have a bowl movement and feel as
though he needs to vomit, and ussuallly he does. After vomiting for
hours, his eyes get sunken in, tierd...probably because of
dehydration. He ussually ends up the the UrgentCare/ER... with an IV
to hydrate him. It totally mimics flu like symtoms or a Virus. At
first the doctors thought he had IBS...but after seeing the GI
specialist.... he diagnossed him with CVS... Have your researched
CVS.. if not, try googling it.... thats what helped me understand.
And its highly genetic... I had sever migrains when i was a child...
very simlar symtoms as my son has. But of course I was just
diagnossed with Migrains... I dont know if Doctors new much about
CVS. Since my son has been on Depakote (which is usually used for
people with seizures) (which my son doesnt have) hes been almost
episode free, which is amazing. In the beginning he had two minor
episodes which last hours... compared to days. He still gets stomach
pains... feeling of having to have a sever bowl movement... and
occasional head aches.. but nothing compared to 7months ago. I
suggest you ask your doctor if its right for your daughter... just to
try wouldnt hurt. Some doctors are concerned about Depakote
affecting the liver/kidneys, however my son is on the smallest dose
and has his blood checked every 3 months... so far.. hes good.

Im sorry your family and daughter are going through this... Its hard
because you hate to see your daughter in pain, and its hard on your
family, calling off work, missing events ect. because of her
episodes. And I bet its even more fustrating when the doctors have
no clue whats going on. FOR YEARS... I was told every time he got
sick, "Oh..its just a Virus, or Its probably the Flu" I just wanted
to figure out what was wrong with my baby.

Maybe this may help you, my son was on
**CYPROHEPTADINE**--this he had a reaction too..it made him crazy,
and very emotional, one minute crying- anger fits- depression -
anxiety. it was horrible they took him off this immediately.

He now takes
*DEPAKOTE* 125mg 2x daily
*PHENEGRAN*-for headaches/nausea
*ZOFRAN* onset of nausea both pills or suppository

I hope this Helps you and your daughter... keep me updated!





--- In cyclicvomitingsyndrome@yahoogroups.com, "lorrine_peruzzo"
<lorrine_peruzzo@...> wrote:
>
> What does the Depakote do? Does it keep the CVS or the migraines
from
> coming on? You know there's been a few times when right before bed
> she's been on the potty and I remember thinking to myself that she
> just didn't look right around her eyes, kind of shallow and sunken
and
> then that night she would wake vomiting. She's developmentally
> delayed so she can't really relay any kind of feeling coming on
> however she had told me that she is dizzy and her head hurts at
times.
> How do you know if its Abdominal migraines or CVS?
> Its so great to finally connect with people who have the same
issue!!
> Thanks so much!!
> Lorrine
>
> --- In cyclicvomitingsyndrome@yahoogroups.com, kerii18 <no_reply@>
> wrote:
> >
> > --- In cyclicvomitingsyndrome@yahoogroups.com, "lorrine_peruzzo"
> > <lorrine_peruzzo@> wrote:
> > >
> > Hello, yes my son is 9yrs old and has CVS, hes had it since he
was an
> > infant, he has both Adominal migrains and head migrains.
Anything
> > can set it off, Holidays, excitement, anxiety, likeing/hating
school,
> > worrying about things, especailly being afraid of getting sick
again.
> > My son has a GI specialist and a Neurologist... hes been on
Depakote
> > since they finally diagnossed him about a year ago. They gave
him
> > supository's and pills to stop the nauseau. Its been our miracle
> > drugs. Just let me know what you want to know... I will try to
help
> > you with what I can.
> >
> > keri, kerii18@
> >
> >
> >
> > Hello,
> > > I am new here, our daughter Katie is 7 yrs old and has a rare
> > > chromosome abnormality called Tetrasomy18p. She has been doing
> > > something odd for over a year now in that she will wake in the
> > middle
> > > of the night(usually 3 or 4 am actually) and start vomiting,
this
> > > lasts until we can get an anti nausea med in her
(gravol,dramamine)
> > > and that will usually stop the vomiting after an hour or so.
Without
> > > the med she is vomiting every 10 mins. She will complain
about
> > being
> > > dizzy. She has had an overnight EEG and it showed some mild
rare
> > > spiking on her right side. The Neuro at first thought she was
> > > possibly having night seizures but now believes she could
possibly
> > > have CVS.
> > > I am getting a consult with our Gastro dr. early next month.
> > > I did myself have a mild case of CVS as a child and now have
> > migraines
> > > periodically.
> > > Has anyone ever heard of abdominal migraines?
> > >
> > > Also we are doing a fund raiser to get Katie an Autism Service
dog.
> > > We have hopes this dog in addition to keeping her safe while we
are
> > > out also notify us in the night when she has these vomiting
> > episodes.
> > > She also tends to get up and walk around at night.
> > > my web page for the fund raiser is here:
> > >
> > > http://clients.teksavvy.com/~lorrinep/
> > >
> > > I would appreciate if you could have a look and if you can't
donate
> > > then maybe pass it along.
> > >
> > > Well I just wanted to introduce myself and our Katie and hope
to
> > learn
> > > a lot from this board that may help her!!
> > >
> > > Thanks!!
> > >
> > > Lorrine
> > > Mom to Katie T18p 7 yrs, Alex 6 yrs.
> > >
> >
>