Jen -

I have two kiddos with CVS. My son (11) has pretty bad episodes while
my daughter (8) has mild episodes. I told about the kiddos episodes in
post #530 for my son and post #531 for my daughter. I have taken part
of these and posted them below. My son's episodes have progressed from
bad stomach aches to severe vomitting. My daughter's episodes have
remained mild but the episodes seem to be longer in duration and more
vomitting than they used to be.

Several times my daughter has had her episode in the early am, cleaned
herself up, put a bed on the floor and went back to sleep. She was her
energetic self in the morning when we woke up so I had no clue. It
wasn't until I went in her room, found "the bowl" or she mentioned
something in the morning that I realized she had an episode and I slept
through it. I am a light sleeper so this has been amazing to me that I
have actually slept through some of her episodes.

The first Ped. GI we saw at Children's refused to even talk to me about
CVS and completely dismissed my concerns telling me the kiddos
absolutely did not have it. Well, in my opinion, the GI was 6 months
from retirement, had not really dealt with CVS and didn't want to be
bothered.

I got a referral from someone on this group to a wonderful GI who deals
with CVS and is AWESOME with the kiddos. The kiddos went through a
bunch of blood tests, MRI's of the brain and stomach, barium swallow w/
x-rays (I don't remember the name for this but it did show my son had
acid reflux) and an upper GI to rule everything else out. When
everything came back normal, that is when they were diagnosed with
CVS. There is no explainable reason my kiddos should be vomitting.

With my children's episodes being so incredibly different, I wasn't
sure my daughter's episodes were CVS until we went to the Pediatric GI
and she was in fact diagnosed. I am so thankful to say that her
episodes were from 2-3 a week and now we are 12-15 weeks between
episodes. Her episodes are always early am or upon waking and can last
anywhere from 30 min - 2 hours. During an episode neither of my kiddos
have never vomitted food just water, acid and bile. YUCK! Also, my
daughter has a fever during her episodes while my son does not.

Just remember, you are your child's advocate and you know them better
than anyone else. I would suggest getting a good Pediatric GI who
knows about CVS or is willing to learn. If they aren't willing to
listen to you or follow through with CVS as a possibility, find someone
else until you have answers. You can go to the CVS website and request
a list of Dr. in your area who deal with CVS if there are any. We
drive 2 hours to Children's Hospital for several of the kiddos Dr.'s.
The drive is worth it since they are receiving the care they need!

Terry
in Colorado

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Partial post #530

My ds started with stomach aches when he was 22 mo. He had been
hospitalized for Strep Pneumonia. The strep had gone undiagnosed
for 2 months. After this, he would complain of stomach aches. I
talked to his PCP and was told children can have mystery stomach
aches that turn out to be nothing. At 5 my ds started to have
headaches with the stomach aches and sometimes just the stomach
aches. At 7 he started getting migraines instead of headaches.
Sometimes with a stomach ache. ((I forgot to add here that after his
7th birthday he also started having severe vomitting episodes))

Just after my son turned 8, he had a severe migrane with severe
stomach cramping and vomitting. I took him into a new PCP and was
told he had a stomach migraine. Never heard of that one before!
Since then, the episodes seem to be escalating and getting longer in
duration.

The episode would start out with him feeling blah. He would then
become real cuddly and cranky. This would turn into him saying he
has a headache. The headache would then turn into a migraine. The
migraine would turn into a severe stomach ache where he would cry
and scream in pain. We found if we gave him 7-up, he would throw up
for about an hour and then the episode would be done and within 30
min. he would be starving, severely thirsty and fine like nothing
happened. The episode would last for about 2 hours from start to
finish.


It is so bizarre that he can be in such intense pain, etc. and all
of a sudden it stops and within 30-60 min. it is like nothing
happened. I had migraines as a teen and they would last for days.
I never had a "hangover" from the migraines nor had vomitting with
them. These seem like classic migraines/stomach migraines with a
twist!

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Partial post #531

Now about my dd. She is now 5. We had a bad bout with an
undiagnosed kidney infection when she was 3. It took over 9 months
to get rid of it. After this, she hasn't been herself. In
September (just before her 5th birthday) woke up in the middle of
the night around 3am and vomitted for 2 hours. I woke up to find
her in the bathroom taking care of herself!

She is a pretty tough cookie!! She never complained about any pain,
she just vomitted uncontrollably for 2 hours and had diarreah. She
slept for several after that. This came out of nowhere. I thought
she must have a bug.

She ended up having vomitting episodes sometime in the early morngin
or upon rising, 2-3 times a week for several months. The dr. had us
go in for an MRI of her brain. This came back negative. The next
thing to do is go to the gastrologist. In November the episodes
started to be once a week or once every two weeks. Just before
Christmas, they all of a sudden stopped completely.

She has a high pain tolerance like I do and seems to shake off
illness. When she had these episodes, she would say "I don't feel
so good mom." She would be lethargic and sleep alot - very unlike
my energetic daughter.

Now that I am writing this, I am realizing, she had projectile
vomitting as baby and would spit up ALOT. Nothing ever came from
this and she "outgrew" it. Now I am wondering...

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Partial post #1011

My 6yo daughter keeps waking up in the middle of the night or early
in the morning and will spend about 2 hrs. off and on vomitting. We
had an MRI done to rule out any brain trauma. Everything was fine.
The Gastrologist put her on Prevacid and said to take her off of it
in 6 months. I have done that. The vomitting is starting up
again. I have put her back on the Prevacid and it seems to have
stopped the vomitting but the daily upset stomach continues. This
isn't anything like what my son has but could it be the beginnings
of CVS?? Are there any other tests you would recommend I have done
for her? I must admit, I am perplexed and clueless.

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Also read post 1016