Oh I'm so sorry! Can you get her pediatrician to prescribe Zofran or
Ondansetron for her right away? Can you take her in to be seen, and then ask
for something to help stop the vomiting? If her ped doesn't know what to use
take some information in with you about CVS, and tell him/her that the most
effective treatment is orally disintegrating Ondansetron 8mg tablets given
every 4-6 hours. My son is 9yrs old, 62lbs, and that is his dose. That's the
only thing I can think of to help stop an episode at home. You might however
have to resign yourself to the fact that she needs to be taken to the ER to
help stop it. Once Devin starts vomiting there is no stopping him, and he
needs help ASAP! He'll vomit every 5-15 minutes, and needs the Ativan and
Zofran that Dr. Li told your doctors about.
With the Topomax, don't give up on it forever. You can titer the dose to fit
your child. If Devin gets on too high of a dose, he'll have those
neurological side effects as well. Just see if you can lower the dose. That
might work, but of course that has to be done through your doctor. The Lord
willing, Dr. Li will be able to see you ASAP, or at least talk to your
doctors again to help.
I'll be praying for Emmie.
Kristine *Ü*

-------Original Message-------

From: Kim Mangione-Middleton
Date: 11/26/2007 11:10:50 AM
To: cyclicvomitingsyndrome@yahoogroups.com
Subject: [Cyclic Vomiting Syndrome] please help

We're desperate! Emmie has been vomiting every 1-2 DAYS since we've
been home from the hospital! The Topomax preventative is causing
terrible neuro side effects and obviously NOT working, and 've been
having to give her rectal valium and compazine every other day at
least! Has anyone heard of acupuncture helping??? A friend sent me
info, but it only seems that its been used VERY little. We're planning
to travel to see Dr Li in Wisconsin, we just have no idea HOW to pay
for it! Any help is greatly appreciated! Emmie is having another
episode now!




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