Since my 6 year old wakes up with her episodes, does anyone know if the Zofran
would help at bedtime when she is well for the next morning since the amt. of
time between the episodes is so predictable . We end up giving it to her when
she gets up early am and tells me she "has a migraine" and then she still ends
up vomiting all day but just a little less than before (used to be 30-40 times
in a few hours.) Has anyone gone to the Chicago unit for CVS , heard from one
person that they werent impressed but that is all there is for actual speciality
units for it. Anyone tried Dr Rothner in Cleveland?
My Sarah just got off of Verapamil, has been on Carnitore, Diamox,
Propranolol, Periactin, Topamax, Elavil and a few more I now forget....we are at
the end of the line with the med's as there really seems to be nothing else and
nothing works except the Zofran a little. I really think there is no med. that
will cut it. Still cant figure out how this thing can happen , EVERY single
month , like clockwork , what is the mechanism in her brain that does that?????

dale van <dale2ann@...> wrote:
Thanks Chris. It is always great to hear about someone getting good response to
meds. I would love to hear about Jamie's medications just to see what is
working for her. Does Jamie have migraines? Liv has them rarely, but she does
have a paternal family history for migraines. Some Drs. working with CVS
believe in the midochondrial theory and some don't. How long has Jamie had CVS
and does menses play a role?
Thanks for your input.
Ann

Chris Hendrickx <chris.list@...> wrote:
Jamie (my wife, 26 years old) and I are running into the same problem,
our insurance doen't know about CVS, so they limit Zofran to 36 a order
($1000 worth). We're trying to get them to let us get them a phramacy
so we don't have to mail order so often. Fortunately, our last
insurance company has a higher per order limit, so we could get 180
every order, and they'd approve an order every 25 days. We ordered every
time they'd let us for the last couple months, when we were still
carrying the COBRA, since we knew the new insurance would be an
obstacle. Thankfully, we've got enough left to be able to still work
while we fight the new insurance.

FYI, I looked into canadain sources for Zofran and it's not a whole lot
better than buying it outright in the states, or course this is when the
insurance was flat-out denying Zofran. It does the trick for her too,
takes away the nausea. Tehre are other drugs she's on as well that help
with the anxiety and she currenttly works full time, takes ocassional OT
and lives a pretty normal life with me. Does she still cycle? Heck yes.
It's every 2-3 months (thankfully, usually 3) and she'll generall feel
nauseated and like she needs to puke. She might do so once or twice, but
that's it. MUCH better than her normal episodes.

The fix of drugs she's currently on came after years of trail-and-error,
and I've heard from others that the same solutions don't work for
everyone, so I'm not going ot bother posting the list. Dr Fleischer came
up with the complete list she's on except for one (Paxil) that got added
on a second consultation a few months later.

Hope this at least shows you there _is_ hope.

-----Original Message-----
From: dale van [mailto:dale2ann@...]
Sent: Monday, February 23, 2004 8:23 PM
To: cyclicvomitingsyndrome@yahoogroups.com
Subject: Re: [Cyclic Vomiting Syndrome] it's been a while


That is wonderful news. I just sent your message to my daughter who has
severe CVS. The frustration for her is that her insurance is limiting
her Zofran to 10/month so she doesn't feel free to just take them with
nausea for fear she will need more. Maybe your letter will inspire her.
Thanks,
Ann

redciviclx2001@... wrote:
I know for me I never have any warnings and don't know what causes it. I
also
take Zofran but since my last episode in May of last yr my doctor has me
take
the zofran the minute my stomach gets upset so far it has worked it
stops
before it starts. When I use to take it I was already vomiting but like
he says
its to late if just settles it doesn't make it stop.


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