Hi Lorraine,
I too have a 7 year old daughter with Inverted Duplication 8p and CVS. She
started her CVS when she was approximately 2 years old. The only thing we found
that helped was Ondansetron (the anti nausea/anti vomiting medication given to
patients with cancer). Just last week our neurologist put Gabriella on
Sandomigran to help control migraines which is believed to be causing the CVS
episodes. Gabriella can have any where from 0 to 6 CVS episodes a month from
mild to severe. The longest we have ever gone without an episode is about 3
months. It is referred to as an abdominal migraine, and unfortunately due to my
daughter being intellectually delayed, she cannot describe to me what she is
feeling. But from other people I have spoken to with CVS they describe their
pain as a migraine in the stomach. This is why the horrible vomiting and
retching.
If ever you would like to chat, feel free to drop me an email!

Coby, Mum to Gabriella 14/10/2001
Inv Dup 8p (23.1p11.23), CP, ACC, CVS




________________________________
From: lorrine_peruzzo <lorrine_peruzzo@...>
To: cyclicvomitingsyndrome@yahoogroups.com
Sent: Monday, 10 November, 2008 1:30:46 AM
Subject: [Cyclic Vomiting Syndrome] Our daughter Katie


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.




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