Are we allowed to talk doses here re: the CoQ10 and L-Carnitine? Thanks, Mimi

-------------- Original message --------------
From: "mcdolemom728" <mcdolemom@...>
I'm so sorry to hear that you had to make another trip back to the
hospital. They should have admitted her the first time and made sure
she was ok before sending her home. Our doctor always does a direct
admit, bypassing the ER and gives meds to put Kathleen to sleep for
several hours to stop the cycle. He says once the vomiting starts
that is about all that truly works.

How far away are you from Milwaukee? We drive 2 hours to Columbia,
MO to see Dr. Fleisher, and when she needs to go to the hospital. We
go to the University of Missouri Medical Center. Seems a shame since
we live in the St. Louis, MO area that there isn't anyone here that
knows what to do. We went to several (many) docs and hospitals in
our search for help, but didn't get any here. St. Louis Children's
Hospital is supposed to be one of the best in the country, but they
were NO help to us. One time we spent 5 hours just in the ER waiting
room, the whole time she was throwing up (had been for a week) and on
the verge of passing out and no one seemed to care. She lost 36
pounds before we found Dr. Fleisher. I truly thought she might die
before we could get someone to help us. Thank God for the internet
and being able to search out the experts!

I hope you can get info on the Co Q10 and L-Carnitine, they truly
have been a miracle for Kathleen. She has gone 18 months without
being hospitalized. She did have a couple of episodes that we were
able to treat at home.

Hang in there, it will get better. Help is available, you just have
to be diligent and find it.

You, your daughter and family are in our prayers. Let us know when
she is better and wants to talk with Kathleen. (((HUGS)))

Mary

--- In cyclicvomitingsyndrome@yahoogroups.com, "Christine and Steve
Marks" <4marks@...> wrote:
>
> Thanks to everyone who has resonded. We were in the ER for 8 hours
yesterday...seemed like we'd shut the cycle down. Came home and had
the pizza Mady had been craving. She's down to 79lbs on her 5'1"
frame--we were thrilled to see her packing it away. But the nausea
returned several hours later and we were back with the "chucket"
(upchuck bucket) as she calls it all day. We're headed up to
Milwaukee tomorrow where they want to admit her. Whatever it takes to
stop this and get some weight back on her. I'm going to ask about the
CoQ10 and anything else I can think of. She's looking forward to
chatting with other CVS kids when she gets home. I agree with her
that no matter how rotten this is, it's quite a comfort to find that
she's not alone. We'll let you know how it goes!
>
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