Hi Darshani -

Have you visited the CVSAonline.org website? There is a wealth of
information there - some even that you can present to your Dr. They will
also send you a list of "CVS" Dr.'s in your area (if there are any).

Unfortunately - there is no real "test" that can prove that your daughter
does have CVS - it's just as the Dr told you, more like rule out everything
else and THEN we will know it's CVS.

There are however, specific symptoms that would help with a true diagnosis
(at least according to my Dr.who IS a CVS Specialist) - they include the
"water" guzzling - as well as wanting to be in the water (I LIVE for a hot
shower or bath every time I start an episode, even though it doesn't really
"help" - in my mind it is Heaven), attitude changes, sensitivity to light,
etc. Not everyone has all the same symptoms, but most cases will have at
least one or two similar to others.

I certainly hope that you do find what the true cause of your daughter's
illness(es) is and I send you many huggz and prayers of encouragement and
strength!

Tina

_____

From: cyclicvomitingsyndrome@yahoogroups.com
[mailto:cyclicvomitingsyndrome@yahoogroups.com] On Behalf Of Darshani
Sent: Thursday, August 16, 2007 7:43 AM
To: cyclicvomitingsyndrome@yahoogroups.com
Subject: [Cyclic Vomiting Syndrome] new here but not to vomiting



Hi,

My daughter is 3.5 and has struggled with vomiting and feeding problems
since birth. She has had periods of severe vomiting (including
sometimes hospital IV needed) followed by periods of peace and quiet.
She got an NG feeding tube at 3 months old for failure to eat enough by
mouth. At 8 months old she got a gtube which she still depends on for
most of her nutrition. She has been to three different GI's and finally
the third one diagnosed her with EE (eosinophilic esophagitis). EE is
difficult to diagnose and requires a biopsy during endoscopy. Some of
the symptoms in early childhood including vomiting and difficulty
eating/swallowing. So this made sense and I was happy to finally know
what the problem was.

We switched her to a special hypoallergenic formula since EE is a
disease usually caused by food allergies. Basically the people get rash
and eczema on their insides instead of the skin (ouch!). She got a
clear biopsy four months later, her vomiting had almost stopped, and I
thought our problems were solved.

However even on the new strict diet that controls the EE, she started
having vomiting episodies again. Her doctor now thinks she might have
CVS and/or IBS. The episodes will sometimes go away for months and we
think all is well. Then they will come back and they will be spaced out
about every one to two weeks, and will last one to three days.
Sometimes there is a low grade fever but other times not. Her vomiting
cycles usually start between 1 and 5 AM. She will just have
uncontrollable vomiting and will drink water and vomit it right back
up. Thank goodness for the feeding tube! We put her on a super slow
drip of Pedialyte to keep her hydrated enough to stay out of the
hospital. In June we discovered Zofran and it works great as long as I
give the dose right at the onset of the first vomit. Sometimes she
needs one more dose later in the day, but it seems to stop the attacks.
We are all just so tired of this. Last time she had an attack last
week, she had a little mental breakdown and was crying about how tired
shshe was of vomiting, how she wished her tummy was not broken and she
had a good tummy like her sister. It just broke my heart and I felt so
helpless.

After the last atttack I took her to the GI's PA and they tested her
for pathogens that might be causing the problems (the report was
normal). The previous time to that my daughter was put on Flagyl to
treat possible C.diff. It did not help and the vomiting came back 2
weeks later. The doctor asked if we had migraines in my family. Yes, my
mother suffers from terrible migraines that leave her bedridden for a
few days sometimes. My aunt also has them. The doctor asked if my
daughter has anxiety. Again, yes. She has received some occupational
therapy for it even as an infant because she had anxiety attacks around
strangers and other things. She is calming down more but still has
anxiety attacks.

My daughter also suffers from constipation at times, and diarrhea at
other times so that's why they are also thinking IBS. The doctors
basically said that diagnosing CVS or IBS is a process of eliminating
anything else that could be going on and it will take time. I just
wanted to know if there is any way for sure to know if it's CVS or
something else. Are there tests that are good to do? How aggressive
should I be in trying to get a diagnosis or rule out other things? I
think her doctors are willing to wait and see and as long as we can
keep her under control with Zofran and her dietary restrictions they
are satisfied.

My daughter has GERD and asthma, too.

Thanks for listening.

Darshani





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