My 6 yr old daughter has CVS , has had it since she was 6 mos. old every month
like clockwork , , she was finally diagnosed with it at age 4 by a new
neurologist, she gets a preday of a half day what we call for ease of naming it
, migraine and then will be fine by about noon then she gets the full blown day
where she has vomiting all day long with photosensitivity , dizziness , and just
inability to function which usually starts to ease up around evening and maybe
she can eat something then . Before Zofran , she would vomit 40 to 50 times in
a few hours but now we have lessened to about 10 times or so during the day.
The last day is the recovery day when she still has periods of dizziness and
will hold her head totally still to not make herself dizzy then between episodes
, she is totally fine. We went through all the tests , her lactate was also
elevated at times , she was screened for metabolic disorders and had none , she
had MRI's which were clear and lots of bloodwork of
various sorts. She has been on every medicine that they could think of for her
age, phenergan , periactin, inderol, propranolol , elavil, verapamil, compazine,
diamox, bulbutal and a few others I cant remember. Nothing has helped , we
finally stopped all the medicine except the Zofran and now we just deal with it
and hope that it doesnt fall on a holiday or vacation or important day to her
for school which it has and will continue to do.
The only thing with all of the testing is that it yields no answers except
that if nothing else comes up , it is CVS so then what? I have yet to read
anyone who actually has found anything that helps it or makes it go away ....I
have repeatedly asked if anyone has gone to the CVS unit in Chicago and no one
seems to have , I keep thinking of going there but wanted to wait till we had
exhausted all of the meds. which we seem to have. And what are they going to do
there that we havent already done? So when you say that you heard it can get
worse as they get older if you dont do something about it , what exactly are you
planning on doing as there doesnt seem to be anything ??? Has someone told you
something I dont know , it is just so frustrating to watch my daughter suffer
each month and miss things.... she is so good about it , she doesnt know
anything else. But now she is starting to get mad at it too which I think is
good. She has a twin sister who doesnt have it....I have
heard CVS is in the mitichondria of cells they are thinking so the mitochondria
are not identical in twins so they could both be different as far as that goes.
Please anyone let me know anything that works for you or your child to
control this horrible disease. Later.

Desiree <licountrygirl@...> wrote:
Hi. My 8 1/2 year old son is in the process of being testing for what
we think might be CVS. He's been experiencing the symptoms for about
a year now - increasing in frequency in the last few months to about
every 2-3 weeks. They only last for 1-2 hours for one day and then
he's fine as can be. The worst episode lasted for about 2 hours for 3
mornings straight. I'm thankful that he's not as bad as I hear it can
get.

The testing is daunting. I've been very fortunate with their health
in the past (I have a 2 year old symptom-free daughter.) Watching him
freak out when he has to go for blood tests is hard - but I know it
can be much worse and I can be thankful that it's not.

He's been seen by a pediatric gastroenterologist who sent him for a
huge blood workup, abdominal and renal sonograms and an upper GI
series. His ammonia and lactate levels came up higher than normal,
but when repeated were in the low normal range. The upper GI was
essentially normal, except there was a delay in the emptying of the
stomach. Once it started, it was fine.

His next stop was the metabolic specialist this week who ordered
another huge blood workup for metabolic diseases. It will take weeks
before the results are back.

We've been asked to wake him up at 2am for juice and a cookie to see
if that helps. We'll see.

The next step would be an endoscopy and an overnight stay in the
hospital to monitor his blood as he fasts to check ketone levels.

I've been told by other parents that the tests are pretty much
necessary because if left untreated and undiagnosed, it can get worse
as he gets older.

I've been fortunate enough to never have had to admit him to the
hospital for dehydration.

So, if you would like to chat once in awhile and blow some steam -
I'd listen. I'd also like to pick your brain about what kinds of
testing your daughter went through before her diagnosis.

My email and yahoo messenger name is LICountryGirl.


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