Hi Everyone,
I am the mother of a 31 yr old daughter who has suffered from CVS for approx.
5 yrs. Our life turned around when we visited a CVS specialist at the Mayo
Clinic in Scottsdale a little over a year ago. My daughter has been almost
symptom free for a year with no hospital or ER visits or missed days of work and
fun. Her intervention included diet, medication, rest, identifying stressors and
avoidence and aggresive use of the Zolfran at the moment she first felt "funny".
She no longer has S & S of GERD nor is she on meds for it and she rarely needs
her Zolfran these days. She has benefited from counciling and now even stress
doesn't trigger her like it used to. I would encourage anyone who lives with
this misery to seek a specialist listed on the CVS website in order to get
appropriate intervention. My daughter saw dozens of physicians in LA prior to
us taking an aggressive step to seek a specialist in the disease. In addition
the CVS clinic at the Chicago Childrens Hospital
sent us lots of great literature about the disease which we benefited from.
Keep a diary of your childs illness and anything you think might be a "trigger".
Keep track of foods (our Dr. recommended low fat, high protein/carb foods.) My
daughter used to "trigger" more during the time of her menses and when very
tired and stressed. We learned that airline travel was a "trigger" for my
daughter, so she will fly for the first time in 1 1/2 yrs this summer. It will
be interesting to see if she "triggers" or not. Hang in there and read all you
can and try different things and hopefully with time you will have the good
result we are having now.
Best of luck,
Ann

melody sisson <garrf40@...> wrote:
Dear hillary,

Hi my name is Melody and I have a 12 year old son named Wayne and he has what
doctors believe to be cvs.I also had never heard of this until we were in the
hospital for days and they came up with this. My son has been a severe diabetic
for 3 years and he has had so many problems since then. I was told he should be
put on anitriptalin or something like that and so we gave this medicine to him
and 2 weeks into this medicine he started having siezures. So I took him off
this medicine and right now he is not being treated for cvs. You are not alone
and pleases don't get discouraged, it seens hopeless sometimes but keep your
chin up and prey for something good. Take care, melody

ditavtmanson <ditavtmanson@...> wrote:

My name is Hillary Rhoades, I have a 3 year old daughter named Kylie
who has been diagnosed with Cyclic Vomiting. She first started
showing symptoms when she was 6 months old. At first her
pediatrician didnt know what it was that was causing my little girl
to be so sick, she kept telling me that Kylie had the flu. Then
November of last year her pediatrician recommended that we go down
to Boston Childrens hospital to see a bunch of specialists. A bunch
of tests and hospital stays later we finally had a diagnosis, Cyclic
Vomiting Syndrome. The doctors down at BCH put Kylie on Zofran and
it worked for a while but then Kylie atarted to become violently ill
once again, so the doctors then put Kylie on Prevacid, and so far it
is working fine. Kylie has had to be hospitalized a few times since
starting the Prevacid, but once she comes home she is back to her
normal self, or whatever can be considered normal under the
circumstances. Before all this I had never heard of Cyclic Vomiting
Syndrome, I looked it up on the net to learn more about it, but
still I felt alone, til' I found this web site. I hope to be able to
talk to other parents like myself and maybe get some advice on how
to handle my daughters illness and still be a mother to my 1 year
old son. Iam a single mother so Iam havin a bit of a hard time of
managing. I look forward to hearing from others in my position.





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