I didn’t know that most studies were done in Florida. My Dr. and his partner
are the “founders” of Adult Onset CVS I guess you would say – they “wrote
the book” on the subject, but they are at Los Angeles, Cedars Sinai Hospital
(Hospital of the stars). Mind you I say ADULT ONSET which to me is a
completely different disease.



You can get a LOT more info on Dr.’s in your area as well as a lot of very
useful info in general at http://cvsaonline.org



Sorry – those symptoms don’t sound like anything I have- but I only have had
CVS for 4 years and it was Adult Onset so I have no experience in it with
children. Thankfully I didn’t pass it to any of mine:/



I do hope you find answers and your daughter gets well soon!



Tina



From: cyclicvomitingsyndrome@yahoogroups.com
[mailto:cyclicvomitingsyndrome@yahoogroups.com] On Behalf Of ANGELA CROOKS
Sent: Wednesday, November 14, 2007 3:24 AM
To: cyclicvomitingsyndrome@yahoogroups.com
Subject: Re: [Cyclic Vomiting Syndrome] Question for parents of child with
cvs



It sounds like she has cvs to me. the problem is there are very few doctors
who know how to treat CVS. I have had it for 16 years now and im now 29.
I can say my problems never stop between bad episodes. I'm in so much pain
and sickness all the time, I take morphine for it. No doctor can say that if
your are ok between you don't have it.

From what you have said to my I looks like she dose have CVS.
Most studies or CVS have been done in Florida USA I would take a look on the
uas web sites you may get a doctor who knows what they are on about.
good luck and please keep in touch.

best wishes to your daughter.
----- Original Message -----
From: chris.list@... <mailto:chris.list%40chrisandjamie.net>
To: cyclicvomitingsyndrome@yahoogroups.com
<mailto:cyclicvomitingsyndrome%40yahoogroups.com>
Sent: Tuesday, November 13, 2007 3:56 AM
Subject: Re: [Cyclic Vomiting Syndrome] Question for parents of child with
cvs

Jamie said she's nauseous every day. She's 29, and the episodes hae ben
more mild in the last few years than they used to be. Not sure if it gets
worse as an episode comes on, we'll have to monitor it.

> Hi! My daughter was diagnosed with cvs by one of her doctors.
> Another doctors say she doesn't have it because she has liver
> disease (Autoimmune Hepatitis (currently not active)and Primary
> schlerosing cholangitis). When I read about cvs, her attacks sound
> alot alike. The doctor that says she doesn't have it is because a
> child with cvs is otherwise healthy and does not have any
> gastrointestinal problems. One thing that I have not seen in the
> posts is what my daughter experiences before an attack. She will
> for several days before an attack have constant mild nausea. Then
> after 2,3,or 4 days the big attack happens. She also gets around her
> bellybutton such severe pain that the er gives her morphine. This
> has been a pattern for her. Does anyone experience this or is the
> episodes with no warning? Her doc put her on Reglan (it makes the
> stomach open up to allow the food to pass) because he thinks the
> bile in the liver is backing up into the stomach and the stomach
> closes causing the food to backup. That is what he thinks makes her
> throw up.After a bad attack, she is in bed for usually 2 days, she
> doesn't eat and continues to have mild stomach pain. That is another
> thing different from cvs. Anyways, I thought I would post this
> message and see if anyone has any input or advise.
> Susan
>
>

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