I'm glad they decided to keep her. I agree, the care isn't always
the greatest on the week-end. Giving her something to knock her out
is the best thing right now. Kathleen is allergic to Ativan, she
usually gets chlorpromazine. It is hard to understand how they can
keep throwing up. Most of what we know about throwing up is related
to stomach viruses. None of that applies to this situation, nor does
what we normally do in that case. With CVS (as I understand it),
something in the brain triggers (and there are lots of triggers) the
vagus nerve to go in to a kind of hyperspasm which causes relentless
vomiting. The only way to stop it once vomiting starts is to make
the vagus nerve go to sleep. This is probably an over-simplification,
but I hope it helps. That's why they call it a brain-gut disorder.

I'm glad you were able to come home and get some rest, you need to
take care of yourself too. If your 14 year old daughter needs to
talk to someone, I have a 14 year old daughter that can commiserate.
She has had to take a back seat way too many times too. My husband
and I have health problems as well, so it is quite an adventure at
our house. Someone even had the nerve (it still makes me angry
thinking about it!) to tell my younger daughter, who was 12 at the
time, that it was her job to take care of the rest of the family,
since she was the only healthy one. Can you imagine anyone putting
that kind of pressure on a child?! I would suggest, when you can, to
have a date night with your 14 year old. This way she can have some
special time with you. We have found this to be helpful, and she
will usually tell me things then, that she wouldn't otherwise. She
needs to be able to talk about how she feels and know that it is ok.

It is a good thing that they are doing tests, because CVS is
diagnosed by ruling everything else out.

I know how frantic and beside yourself you are feeling. It's very
hard to watch your child be so ill and feel so helpless and then have
to deal with medical people who don't always know what they are doing
either. You know that's why they call it "practicing medicine"! : )
One thing I have learned is that I'm the one that cares the most and
if I don't speak up for my child who will? I've also learned to
trust my gut feelings and not care what other people think. I've had
doctors tell me that I'm overly protective, etc., but I did
eventually find the right doctor and got help for my daughter. And
when it's all said and done, that is what matters. That is being a
good mom.

Hang in there and keep us posted.

Still praying and sending (((hugs))),

Mary


--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine and Steve
Marks" <4marks@...> wrote:
>
> Mady's in the hospital for the weekend--still can't stop puking. My
husband and switched spots for tonight--I'm home with a martini (is
it ok to say that?!). I think they're going to give her Atavin (sp?)
tonight to knock her out. Is that what they use for Kathleen or
anyone else? She wants to eat so badly and tried several times, no
luck or course. Even the bubble gum she was chewing made her yack.
The weekend is a rotten time to get any help in the hospital, but the
GI doc on the floor has been in contact with our doc. They did an
ultrasound of her kidney, etc and belly xrays to rule out blockages.
I think they're going to give her an enema, too, since it's been at
least a week since she's done anything. But, jeez, she's been
throwing up for the better part of 4 weeks and lost 10 lbs--what
could she possibly still have in her intestine??? If I tell you I'm
beside myself, I'm guessing you all know what I mean. How can she
just keep throwing up? Rhetorical... Milwaukee is 2 hours from our
house. Could be a lot worse. Fortunately we live in a small, tight-
knit suburb and my mom is close by to be there for our 14 year old
daughter who gets the short end of everything when we have to drop it
all to get to the er or dr appts. One thing the doc mentioned today
was something about sympathetic and parasympathetic nervous systems
having something to do with CVS ??? Anyone have a clue about this?
This guy was kind but had about zero personality so it was tough to
relate to him. I'm sure I'll have more info when I get back with
the "regular" team on Monday. I'll keep you posted but in the
meantime you have no idea how much it means to know all of you
unknown friends are out there in cyberspace sending prayers and hugs
to a kid and her family who you don't even know. Thank you. Christine
>
> [Non-text portions of this message have been removed]
>