MY ADULT DAUGHTER HAS CVS AND I AM WILLING TO DO ANYTHING TO HELP HER. THIS HAS
CAUSED HER TO HAVE NO LIFE. SHE CAN'T HOLD A JOB,OR TAKE AN INTEREST IN THINGS
AROUND HER.

AFTER READING YOUR NOTE I AM INTERESTED IN ASKING WHO IS YOUR DR. AND WHERE IS
HE LOCATED?

ALSO I HAVE BEEN READING A LOT AND FOUND DR. DAVID FRIEDEL, MD IN PHILADELPHIA.
I AM WONDERING IF ANYONE HAS HEARD OF HIM? I HAVE NOT CALLED HIM AS YET,AND
WILL BE WAITING TO SEE IF ANYONE OUT THERE KNOWS HIM.

THANKS IN ADVANCE. AND I HOPE SOMEONE SOMEDAY FINDS A CURE.

MARILYN CORDOVA


h_slowik <h_slowik@...> wrote: --- In
cyclicvomitingsyndrome@yahoogroups.com, "Tina Starnes"
<owner@...> wrote:
>
> I am an adult sufferer too - and the compazine gave me adverse
effects as
> well. Phenegran does nothing to my attacks.
>
>
>
> Here is my personal regimine :
>
>
>
> 1 Lexapro 5mg daily in the morning
>
> 2 Chlonopin (total 2mb) at night
>
>
>
> That's ALWAYS meds - in a preventative measure.
>
>
>
> When I start in aura state I Have Zofran over the tongue meltable -
Ativan
> under the tongue meltable.
>
> I can repeat the Ativan up to a total of 3 doses - repeated on the
hour - on
> the 4th dose if I am not out of the Aura or if the episode has gone
full
> force it's off to the hospital.
>
>
>
> When I am admitted I get Thorazine, Benadryl, Zofran and Morphine
every 4
> hours - basically if I am in the hospital Dr. Feldman's orders are
to "knock
> her completely out for 24 hours and admit" at the end of 24 hours
they start
> backing off the dosage and let me decide whether I need more or
not. When I
> am better - I know it and Dr. Feldman lets me go home.
>
>
>
> My attacks generally last 4-6 days and occur almost monthly. I have
been
> admitted and on the drug course - with Dr. Feldman sitting in the
room with
> me - and gone into a second attack!
>
>
>
> I also have a Bard Pass Port in my left arm for IV Therapy. Dr.
Feldman had
> it implanted in April because the drugs were simply tearing up my
veins -
> they were having to move my entire IV line every time they changed
the bag
> because my veins were blowing. The port makes it so that I don't
have that
> problem anymore either.
>
>
>
> This being said - remember I am an ADULT CVS'er and I am sure that
the
> treatment is different for children just as the disease itself is
different
> in children compared to Adult onset patients.
>
>
>
> And YES CVSAOnline.org is the website - it's one of the best
resources we
> have at the moment!
>
>
>
> Tina Starnes
>
>
>
>
>
> From: cyclicvomitingsyndrome@yahoogroups.com
> [mailto:cyclicvomitingsyndrome@yahoogroups.com] On Behalf Of Doris
> Sent: Monday, November 26, 2007 8:46 PM
> To: cyclicvomitingsyndrome@yahoogroups.com
> Subject: [Cyclic Vomiting Syndrome] Re: please help
>
>
>
> My son has adult CVS. He took Compazine once and started seizing.
> The only thing that works is Phenergan via IV fluids and then
follow
> up treatment at home with phenergran suppositories. First sign of
> CVS, I make him go to the emergency room. About one to two days
> later he is better. We have been on this regime for almost 2 years.
> It's the only way to stop his vomiting.
>
> --- In cyclicvomitingsyndrome@yahoogroups.com
> <mailto:cyclicvomitingsyndrome%40yahoogroups.com> , KIM MIDDLETON
> <kimmay117@> wrote:
> >
> > Turns out the reason they stopped compazine is because the rectal
> suppository they gave her was a dose 5 times the recommended dose!
> Now I'm talking with poison control ctr to see at what level she is
> in danger! Spoke with the Peds & he suggested calling them. She is
> out cold - not her normal sleeping time at all - almost impossible
> to wake her up, but we can - and I gave her the compazine at 1130
> this morning! What the heck?
> >
> > mpizey@ wrote: So sorry about all you've been going
> through.... Just wanted to share we did try the Fenergan once I
> believe (rectally?) and it put my son out-- (in this way it was
> helpful!)... More recently ativan (liquid) and zofran helped make
> the episode less horrible.... good luck! (btw- i looked at your
> website and you're daughter is absolutely adorable.... I have a
> daughter from China) -you can see her and my son with CVS in the
> latest CVS newsletter if you get it... If you don't, be sure to see
> the site CVSAonline.org (i believe that's the address???) for lots
> of helpful info! Mimi
> >
> > -------------- Original message --------------
> > From: KIM MIDDLETON <kimmay117@>
> > Aww man... I was afraid you'd say that! ARGH!!!
> > Zofran has been used as rescue measure while in the hospital, but
> it never seemed to work - although we keep using it along with the
> ativan...
> > Phenobarb has been used for prevention by Dr Li in Wisconsin, and
> he had a 79% success rate with it as prevention, so we've been
> pushing for trying that one.
> > I'm very disappointed ot hear that the Fenergan did not help your
> daughter. Disappointed for all of us.
> > My daughter also has DiGeorge Syndrome (AKA 22Q Deletion
Syndrome,
> AKA Velocardiofacial Syndrome) - it seems there is a correlation
> between DiGeorge & CVS... I sure wish these docs could figure this
> thing out while our poor babies are all suffering!!!!
> > My Emmie has had this for 6 YEARS, since she was 2 yrs old - it
> took this long to finally diagnose it & try treating what it really
> is.
> >
>
>
>
> __________ NOD32 2688 (20071127) Information __________
>
> This message was checked by NOD32 antivirus system.
> http://www.eset.com
>
>
>
> [Non-text portions of this message have been removed]
>






---------------------------------
Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Non-text portions of this message have been removed]