I don't feel like the cyproheptadine (periactin) has helped my son...but our
specialist wants us to stay on it for some reason (on it for about 2 years
now)... Just curious if others have found this med helpful or not, and if anyone
has stopped taken it? if so, what happened? Thanks from a frustrated mom, Mimi



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

Matt, you arent from Ogdensburg , NY , are you????

matthew_woods67 <matthew_woods67@...> wrote:          HI NEW TO GROUP AND
JUST DIAGNOSED AFTER HAVING CONDITION SINCE EARLY
80'S. HAVE BEEN PUT ON TOPOMAX AND HAVE HAD SOME SUCCESS WONDERING IF
ANY OTHERS OUT THERE WITH SIMILAR EXP?






---------------------------------
Access over 1 million songs - Yahoo! Music Unlimited Try it today.

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

HI NEW TO GROUP AND JUST DIAGNOSED AFTER HAVING CONDITION SINCE EARLY
80'S.  HAVE BEEN PUT ON TOPOMAX AND HAVE HAD SOME SUCCESS WONDERING IF
ANY OTHERS OUT THERE WITH SIMILAR EXP?

Sorry you've had to find us here!   I used to live in Kansas City (and before
that Columbia)-- unfortunately, my son wasn't diagnosed properly until we moved
to the east coast-- but in case you're not aware, one of the biggest cvs
specialists is located in columbia... if you are interested, i'm sure someone on
this  list can give you his ocntact info... (would be worth driving 2 hours to
see him).... i'm also wondering if he might be a good contact for finding a
support group for your daughter... you might also check on the cvsa web site
where she could at least join on line discussions via a message board....  I too
worry about college/work-life (but since my son's 5 i keep hoping things will
improve by then).....Good luck! Mimi


  -------------- Original message ----------------------
From: "mcdolemom728" <mcdolemom@...>
> Hi, I'm new to this Yahoo group, but not to CVS.  I have a 16 year old
> daughter that has had it most of her life.  I'm wondering if there is
> anyone in this group that lives in the St. Louis, MO area?  I'd like
> to know if there is a support group in this area.  My daughter would
> really benefit from meeting other people, especially teenagers, with
> CVS.  We do not know anyone else with CVS and I know that she feels
> really alone in this.  I'd also like to hear from other parents of
> teenagers and college age kids with CVS.  We have some concerns about
> her future with college.  We are also considering applying for SSI for
> her and would appreciate any advice that could be offered.  We are
> really concerned about her losing her medical benefits when she turns
> 18.  I am glad this group exists and look forward to hearing from
> you.  God bless.
>
>
>




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

Hi,
      My daughter had CVS, not at your daughters age, but from about 22-28. 
After a visit to the Mayo clinic in Scottsdale and a change in her diet, meds,
stressors and other triggors she is now 3 years with no symptoms and no longer
using medication.  Please read all the other coorespondence from the archieves. 
They contain a wealth of knowledege.  I truly believe a huge percent of my
daughters CVS was stress related and when she focused on her stressors her life
improved almost 100%.  I know this doesn't happen for everyone, but just know
there is hope.
   Good Luck,
   Ann

mcdolemom728 <mcdolemom@...> wrote:
           Hi, I'm new to this Yahoo group, but not to CVS. I have a 16 year old
daughter that has had it most of her life. I'm wondering if there is
anyone in this group that lives in the St. Louis, MO area? I'd like
to know if there is a support group in this area. My daughter would
really benefit from meeting other people, especially teenagers, with
CVS. We do not know anyone else with CVS and I know that she feels
really alone in this. I'd also like to hear from other parents of
teenagers and college age kids with CVS. We have some concerns about
her future with college. We are also considering applying for SSI for
her and would appreciate any advice that could be offered. We are
really concerned about her losing her medical benefits when she turns
18. I am glad this group exists and look forward to hearing from
you. God bless.






---------------------------------
Want to start your own business? Learn how on  Yahoo! Small Business.

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

Hi, I'm new to this Yahoo group, but not to CVS.  I have a 16 year old
daughter that has had it most of her life.  I'm wondering if there is
anyone in this group that lives in the St. Louis, MO area?  I'd like
to know if there is a support group in this area.  My daughter would
really benefit from meeting other people, especially teenagers, with
CVS.  We do not know anyone else with CVS and I know that she feels
really alone in this.  I'd also like to hear from other parents of
teenagers and college age kids with CVS.  We have some concerns about
her future with college.  We are also considering applying for SSI for
her and would appreciate any advice that could be offered.  We are
really concerned about her losing her medical benefits when she turns
18.  I am glad this group exists and look forward to hearing from
you.  God bless.

I am so glad you found something that works. My son takes 4mg Zofran
sublingual(melt away) and then I give him tylenol and although is tummy might
hurt he has not vomitted in about 4 months. I live with this myself so I know
how they feel. Best of luck to you


----- Original Message ----
From: kristy_n_emily <kristy_n_emily@...>
To: cyclicvomitingsyndrome@yahoogroups.com
Sent: Wednesday, October 11, 2006 8:43:08 AM
Subject: [Cyclic Vomiting Syndrome] New Meds

Hi all,
I want to thank everyone who responded and let me know I was not alone
with my 6yr old daughter.
We made it through the weekend and she is finally feeling better. I
spoke with her GI doc on Monday and they have added Zofran ODT (which
is a melt away tablet) to try at the onset of an episode. She is
feeling better so we shall see.
This is such a hard issue to address and I find it very validating of
my feelings to hear other stories from parents. It is sooo hard to
watch your little one struggle with this monster and you cannot do
anything about it. Thank you to all of you.
Kristy - OH




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

Hi all,
  I want to thank everyone who responded and let me know I was not alone
with my 6yr old daughter.
  We made it through the weekend and she is finally feeling better. I
spoke with her GI doc on Monday and they have added Zofran ODT (which
is a melt away tablet) to try at the onset of an episode. She is
feeling better so we shall see.
  This is such a hard issue to address and I find it very validating of
my feelings to hear other stories from parents. It is sooo hard to
watch your little one struggle with this monster and you cannot do
anything about it. Thank you to all of you.
Kristy - OH

Hello Kristy.

My son was diagnosed with CVS at age 4 and he is now 7 years old.
Prior to that every doctor we saw (for about a year)told us he was
sick because he went to daycare.  Of course I did not buy it since
he had no other symptoms but the nausea and vomiting.  Once we saw a
GI doc he started on Periactin and Miralax.  Those seem to really
help.  He does still have an occasional episode but they are usually
more mild than prior to meds.  Prior to meds he had an episode every
4 weeks on the dot and they would last 10 hours.  Now he has maybe 4
episodes a year that last maybe 6 hours.  He is also now taking
Prevacid along with the others.  He has been episode free (except
for occassional stomach pains) for 5 months. :)  So there is hope.
In fact his doctor will be trying to take him off the meds in about
4 months if he remains episode free.  The hardest thing about this
illness is that there aren't really too many people who understand
it so you end up feeling all alone.  This group is great.  You will
meet a lot of people through here.  The more support you have the
better.  It will make a huge difference.  My prayers go out to you.

~Ann~

Kristy,
I just wanted to let you know of our situation and hopefully give you a
glimmer of hope.
My daughter, who will turn 7 next sat., did this exact thing last year.  I
don't know what was going on
but it hit a huge peak like that.  Now she is taking daily Periactin and
Zofran when she starts feeling sick,
such as last night. She usually gets sick around her birthday. Well, last
night she came down and said she was feeling sick
  so I got the Zofran out.  Her sister is the exact same way.But once we
started on these meds and time, she's doing a lot better than last year.

If she is sleeping. try to have a cup of tea or take a bath.  I will be
praying for you all. Keep us updated.

Love,
Laura

On 10/7/06, kristy_n_emily <kristy_n_emily@...> wrote:

>   I am new to this group and I really just need to know that I am not
> alone.
> My daughter was diagnosed with this condition in April of this year.
> She had a 4 night hospital stay before GI felt good enough to let her
> go home. I had been figthing with her Ped's office for quite some
> time (close to 2yrs)to get them to send me to a GI. She is 6 and a
> thumb sucker and they kept telling me it was because she sucked her
> thumb. I work in the medical field (but with adults) and I wasn't
> buying into it. Well after we had a trip to ER, sent home, Dr office
> visit (who sent us right back to the hospital for dehaydration), and
> back to the hospital for an over night stay, they finally listened
> and sent her to the GI dr. We went to that appointment on a Thursday
> and Friday night she started all over again (which was our 4night
> stay). She is like clockwork, every 15 min and you could set your
> clock by it right on the nose. This was going on about every 6-8
> weeks. Needless to say, as a single mother, working full time, it has
> taken its toll on me. Staying up all night with her and then working
> all day (if she was well enough for me to even do that).
> The good news WAS that the GI doctor told me I wasn't crazy and it
> wasn't her thumb sucking causing it. She had CVS and we can treat
> that with some meds. The bad thing was her GI doctor said, 4-5
> episodes of this in a years time is too many but your dtr has had 14
> in less than 2 yrs. They put her on Zantac (for some reflux they seen
> on her Upper GI) and Periactin. They have been working wonderful. So
> I guess being a mother, I have had my hopes really high on how well
> she has been doing.
> Unfortunately, this evening, we have been up for the last hour and
> 15min 5 times. Guess what? That equals the every 15min we were at
> before. I have given her a suppository (phenergan 12.5mg) and her
> medicines orally and she is still laying here next to me on the couch
> crying that it feels "like a crab is pinching my belly!"
> I am soo sad that I cannot make her better. How do you deal with it
> emotionally?????? HELP!!!!!
> Thanks,
> Kristy - OH
>
>
>


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

you talk with friends and family about it, look for support groups in your area,
and take time for YOURSELF, but on the down side you need to save all the sick
and vacation time you have, you need to be able to take time off with her when
she gets sick, and always remember 85% of kids out grow this!!!
good luck and god bless
   ----- Original Message -----
   From: kristy_n_emily
   To: cyclicvomitingsyndrome@yahoogroups.com
   Sent: Friday, October 06, 2006 10:22 PM
   Subject: [Cyclic Vomiting Syndrome] HELP!!!


   I am new to this group and I really just need to know that I am not
   alone.
   My daughter was diagnosed with this condition in April of this year.
   She had a 4 night hospital stay before GI felt good enough to let her
   go home. I had been figthing with her Ped's office for quite some
   time (close to 2yrs)to get them to send me to a GI. She is 6 and a
   thumb sucker and they kept telling me it was because she sucked her
   thumb. I work in the medical field (but with adults) and I wasn't
   buying into it. Well after we had a trip to ER, sent home, Dr office
   visit (who sent us right back to the hospital for dehaydration), and
   back to the hospital for an over night stay, they finally listened
   and sent her to the GI dr. We went to that appointment on a Thursday
   and Friday night she started all over again (which was our 4night
   stay). She is like clockwork, every 15 min and you could set your
   clock by it right on the nose. This was going on about every 6-8
   weeks. Needless to say, as a single mother, working full time, it has
   taken its toll on me. Staying up all night with her and then working
   all day (if she was well enough for me to even do that).
   The good news WAS that the GI doctor told me I wasn't crazy and it
   wasn't her thumb sucking causing it. She had CVS and we can treat
   that with some meds. The bad thing was her GI doctor said, 4-5
   episodes of this in a years time is too many but your dtr has had 14
   in less than 2 yrs. They put her on Zantac (for some reflux they seen
   on her Upper GI) and Periactin. They have been working wonderful. So
   I guess being a mother, I have had my hopes really high on how well
   she has been doing.
   Unfortunately, this evening, we have been up for the last hour and
   15min 5 times. Guess what? That equals the every 15min we were at
   before. I have given her a suppository (phenergan 12.5mg) and her
   medicines orally and she is still laying here next to me on the couch
   crying that it feels "like a crab is pinching my belly!"
   I am soo sad that I cannot make her better. How do you deal with it
   emotionally?????? HELP!!!!!
   Thanks,
   Kristy - OH





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

I am new to this group and I really just need to know that I am not
alone.
My daughter was diagnosed with this condition in April of this year.
She had a 4 night hospital stay before GI felt good enough to let her
go home. I had been figthing with her Ped's office for quite some
time (close to 2yrs)to get them to send me to a GI. She is 6 and a
thumb sucker and they kept telling me it was because she sucked her
thumb. I work in the medical field (but with adults) and I wasn't
buying into it. Well after we had a trip to ER, sent home, Dr office
visit (who sent us right back to the hospital for dehaydration), and
back to the hospital for an over night stay, they finally listened
and sent her to the GI dr. We went to that appointment on a Thursday
and Friday night she started all over again (which was our 4night
stay). She is like clockwork, every 15 min and you could set your
clock by it right on the nose. This was going on about every 6-8
weeks. Needless to say, as a single mother, working full time, it has
taken its toll on me. Staying up all night with her and then working
all day (if she was well enough for me to even do that).
The good news WAS that the GI doctor told me I wasn't crazy and it
wasn't her thumb sucking causing it. She had CVS and we can treat
that with some meds. The bad thing was her GI doctor said, 4-5
episodes of this in a years time is too many but your dtr has had 14
in less than 2 yrs. They put her on Zantac (for some reflux they seen
on her Upper GI) and Periactin. They have been working wonderful. So
I guess being a mother, I have had my hopes really high on how well
she has been doing.
Unfortunately, this evening, we have been up for the last hour and
15min 5 times. Guess what? That equals the every 15min we were at
before. I have given her a suppository (phenergan 12.5mg) and her
medicines orally and she is still laying here next to me on the couch
crying that it feels "like a crab is pinching my belly!"
I am soo sad that I cannot make her better. How do you deal with it
emotionally?????? HELP!!!!!
Thanks,
Kristy - OH

> We're down to just using Zofran at the beginning of an episode and
that doesn't even work if I don't catch it right when the first
symptoms show.

What about using Ativan or Nasal Imitrex to knock him out?  Imitrex
has stopped the cycle for my son in the past.


> his episodes are stretching from 6 hrs to 2 days and what used to
be an instant recovery now lasts up to a week.

This is what is happening to my 10 yo ds episodes.  Have you ended
up in the ER or the hospital?

> I actually took printoffs from the CVS site and message board to
my son's pediatrician and they read them over and gave me the
prescription I asked for.

SMART MAMA!!  Good for you!

Terry

Beverly -

My daughter rarely ever throws up food.  It is usually bile and water
so I don't think the Reglan would work.  Thanks for letting me know.

Terry
*****************


> My understanding of the Reglan is that it makes the stomach empty
faster so that the food is not just sitting there waiting to come back
up, if it's not there to throw up then np.
>   Beverly
>
>
> [Non-text portions of this message have been removed]
>

My understanding of the Reglan is that it makes the stomach empty faster so that
the food is not just sitting there waiting to come back up, if it's not there to
throw up then np.
   Beverly


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

We're in the Raleigh area and my son goes to UNC PedGI and sees Dr.
Steven Lichtman.  He was the first doctor we've found that even knew
what CVS was.  We've tried a couple of preventive medications but none
have worked.  We're down to just using Zofran at the beginning of an
episode and that doesn't even work if I don't catch it right when the
first symptoms show.  This illness is so frustrating!  My son used to
have episodes like clockwork.  I could even tell you the exact times
he would throw up.  The last year and a half everything has changed
and now I have no idea when or where somethings going to happen.  He's
only 6 but his episodes are stretching from 6 hrs to 2 days and what
used to be an instant recovery now lasts up to a week.  My doctor is
not the one who prescribed the Zofran, he said he'd heard of it's use
but had never prescribed it.  I actually took printoffs from the CVS
site and message board to my son's pediatrician and they read them
over and gave me the prescription I asked for.  Life's been much
easier since then.

Christy

--- In cyclicvomitingsyndrome@yahoogroups.com, "scoutmom3232003"
<scoutmom32@...> wrote:
>
> Is there anyone in North Carolina who is dealing with this illness? my
> daughter whom is now 14 years old has been having these episodes now
> going on three years, i'm looking for a doctor anywhere close to North
> Carolina or anyone who can give me any advise as to what to have her
> doctor try. My daughter's episodes come on every three months just like
> clock work we know when she is going to have them. It's terrble to see
> her so sick any avvise will be appreciated......Thanks The Sigmon's
>

Beverly -

When my ds episodes did not become "regular" (every 6-8 weeks) until
this year.  We also have been watching over the past few years to
see if anything triggers an episode.  There are several things that
would cause an episode to happen.  He was also having migraines
mixed with the CVS so one would spark the other...
loud noise
not enough sleep
too much liquid milk
rough housing
getting hot
stress
illness

Since ds has been on meds. the migraines typically do not set off a
CVS episode anymore and visa versa.  The meds. have also made the
episodes more "regular" and further apart.

I hope this helps!

Terry



>
> Ok this may seems strange, but we were just diagnosed in the first
> part of August.  I keep seeing were so many of the children have
> regular cycles right on que, with my son we really don't have
regular
> cycles, is this common or uncommon.  We have been hospitalized 3
times
> so far and the first 2 episodes were a year and a half apart,
followed
> by two back to back the first he wasn't hospitalized for but then
6
> days later we were sick again and ended up in the hospital.  Then
we
> went 4 monthes no problems followed with another episode that
ended
> him up in Texas Childrens Hospital were we were finally
diagnosed.  Is
> this unussual or are there alot of children like this?  Thanks for
any
> info anyone can give me.
>
> Bevelry W
> mom to Zacrie age 7
>

Beverly -

We tried Cyproheptadine and it did not work for us.  I am glad it
works for Zacrie!

What does the Reglan do?  I have not heard of this.

Terry


>
> Sandra,
>
> My son started on Reglan before he was even diagnosed with CVS, he
> was on it for over a year before we were even diagnosed and when
we
> finally got into the Gi and she did give us Cvs as a diagnosis she
> has pulled him off of it on a daily basis and replaced it with
> Cyproheptadine as preventative, Preacid for the volume of acid,
and
> then Zofran and Reglan only during an episode and for 3 days
> following an episode.  Hope that helps you some. Good Luck
>
> Bevelry Wirght
> Mom to Zacrie age 7

Mimi -

Our GI has told us that each person with CVS is different.  Each
case has to be handle specific to that person.

Our daughter started CVS after having a severe kidney infection when
she was 3.  She is soon to turn 7.  She wakes up in the middle of
the night or early in the morning, throws up, cleans herself up and
goes back to bed.  It is quite comical with her!  Sometimes I don't
find out she was up until she says something to me during the day.
Sometimes she will be so ill and vomiting for an hour straight
(before meds.) then go to sleep.  After an episode, she wakes up and
is ready to take on the day!  It just boggles my mind.

On the other hand, with our son, his symptoms started appearing when
he was 20 months old after he almost died from strep in his
bloodstream that went undiagnosed until it almost killed him.
Shortly after the strep scare, he came down with the chicken pox.

He started with high fevers (103-104) with no other symptoms.  We
would call them phantom fevers.
He would then have the fever with vomiting but it would only last
for a few hours but never more than a day.
This went into stomach aches and headaches.
Then to vomiting and headaches.
At 7 the episodes went to vomiting and migraines.
These episodes would come on suddenly and leave just as fast.  They
never lasted more than 4 hours - without meds!
Then to severe stomach cramping, vomiting and migraines.
These episodes never lasted more than 4 hours with meds.
This year, the episodes have gone to 6 hours on meds. with a
hangover for a day or two.
The last episode he became dehydrated and we could not get the
episode to stop as we had before with the Imitrex and Zofran.  It
was horrible!  He said it felt like someone was forcefully kicking
him in the stomach as someone was stabing him in the head.

The GI told us that this could be a one time ordeal or it could be
how the CVS will play out for him.  We just don't know.  We were
also told with puberty coming on, that could change everything.  It
could make the symptoms worse OR he could completely be done with
them.

We were told to try the meds. at home and if they don't work then
get him to the ER with the protocol.  After that, we will admit him
as soon as he has symptoms so he does not have to deal with the pain
and vomiting.

I just went through our calendar and his last episode was a little
over 6 weeks ago.  I have been so stressed and upset about the
prospect of having to deal with that again.  I can't imagine what my
son goes through!  The last few episodes he said he is glad it is
over because he knows he will have several weeks before another one
hits.

Today I will be working on getting a bag packed for the hospital in
case we end up there.  It is better to be prepared than to scramble
at the last moment!


Terry


>
> Sorry to hear about your awful ER experience.... curious about
your son's symptoms getting worse!?? Our GI keeps insisiting most
kids outgrow this-- and that it should get better overtime.... any
thoughts anyone??? Mimi

Ok this may seems strange, but we were just diagnosed in the first
part of August.  I keep seeing were so many of the children have
regular cycles right on que, with my son we really don't have regular
cycles, is this common or uncommon.  We have been hospitalized 3 times
so far and the first 2 episodes were a year and a half apart, followed
by two back to back the first he wasn't hospitalized for but then 6
days later we were sick again and ended up in the hospital.  Then we
went 4 monthes no problems followed with another episode that ended
him up in Texas Childrens Hospital were we were finally diagnosed.  Is
this unussual or are there alot of children like this?  Thanks for any
info anyone can give me.

Bevelry W
mom to Zacrie age 7

Sandra,

My son started on Reglan before he was even diagnosed with CVS, he
was on it for over a year before we were even diagnosed and when we
finally got into the Gi and she did give us Cvs as a diagnosis she
has pulled him off of it on a daily basis and replaced it with
Cyproheptadine as preventative, Preacid for the volume of acid, and
then Zofran and Reglan only during an episode and for 3 days
following an episode.  Hope that helps you some. Good Luck

Bevelry Wirght
Mom to Zacrie age 7




--- In cyclicvomitingsyndrome@yahoogroups.com, Sandra Baker
<carouselsb3@...> wrote:
>
> Alyson just started on Reglan 3x per day on Monday.  How has your
success been with that?  Does he only get Reglan during an episode?
Anyone else's kiddo on Reglan?
>
> Thanks,
> Sandra
>
>
> ----- Original Message ----
> From: Amber Matthews <amatthews10@...>
> To: cyclicvomitingsyndrome@yahoogroups.com
> Sent: Wednesday, June 28, 2006 9:50:30 AM
> Subject: Re: [Cyclic Vomiting Syndrome] cyclic vomiting
>
>
> My son and I both have it. I give him tylenol at the firs sign of
a stomach ache and now I follow that up with Reglan. That he stopped
the last three episodes. After vomitting one time he gets zofran,
sublingual. it will melt on the tongue that way even if he vomits it
is already in his system. Can also try Ativan.
> Good luck. I would relly try tylenol the few days prior to the
episode. Write everything down that she has eaten, when she has gone
to the bathroom, when she has her period. You will find a pattern.
It took me two years to find my sons and we found one major one but
the episodes still come at random.
>
> scoutmom3232003 <scoutmom32@aol. com> wrote:
> Is there anyone in North Carolina who is dealing with this
illness? my
> daughter whom is now 14 years old has been having these episodes
now
> going on three years, i'm looking for a doctor anywhere close to
North
> Carolina or anyone who can give me any advise as to what to have
her
> doctor try. My daughter's episodes come on every three months just
like
> clock work we know when she is going to have them. It's terrble to
see
> her so sick any avvise will be appreciated. .....Thanks The
Sigmon's
>
> [Non-text portions of this message have been removed]
>
>
>
>
> [Non-text portions of this message have been removed]
>

Sorry to hear about your awful ER experience.... curious about your son's
symptoms getting worse!?? Our GI keeps insisiting most kids outgrow this-- and
that it should get better overtime.... any thoughts anyone??? Mimi
  -------------- Original message ----------------------
From: "mamatlc2000" <OneSmartCooke@...>
> Elizabeth -
>
> Both my kiddos use the sublingual Zofran.  It is WONDERFUL!  It has
> helped with the vomitting and nausea with both kiddos.
>
> When my 6yo dd starts vomitting, I put the Zofran on her tongue and
> it stops the episode.  Her CVS is very minor and helped with just
> the Zofran.  She usually wakes up in the middle of the night or
> early in the morning, vomits, I give her Zofran and she goes back to
> bed.
>
> My 10yo ds is another story.  His episodes are getting worse and
> longer.  We give him Imitrex nasal spray to knock him out and the
> Zofran for the vomitting and nausea.  We tried Ativan to knock him
> out and that did not work.  The last episode, we could not get under
> control so we ended up in the ER.  It took 2 hrs. before they did
> anything for him.  I was so mad!!!  I understand their need to make
> sure that is what is wrong but to make a kiddo suffer for that long
> was very upsetting.  His screaming in pain was scaring the other
> children in the ER!  They did x-rays, an ultrasound and bloodwork
> before they would do anything.  They wouldn't even give him any
> liquids through an IV even though he was dehydrated.  It was
> terribly frustrating!  GGRR!!
>
> We are hoping this was a one time thing for him.  In case it is not,
> the GI wrote us up a protocol so we can have him admitted for 24 hrs
> and then get him medicated without dealing without all the other
> stuff.  There is no need to make him suffer!
>
> We have an EXCELLENT GI Dr.  No one else would believe us nor did
> they know what to do for him.  We got an excellent referral from
> someone on this list.  If you are in Denver or Colorado Springs, Dr.
> Barrios is WONDERFUL!!!
>
> Terry
>
>
>
>





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

April -

Does your son have migraines with the vomiting episodes?  I was on
propanolol for migraines and my son has migraines, that is why I ask.

My 6yo dd is on sublingual Prevacid nightly and uses subligual Zofran
when she starts an episode.  We also have Ativan to give her to knock
her out but we have not needed it yet.

My 10yo ds is another story!  At first we thought he had terrible
episodes.  After testing and getting on meds. with his GI, the
migraines have seperated from the CVS.  We found out he has acid
reflux, migraines and CVS.  The CVS would spark a migraine and a
migraine would spark CVS.  With meds. we have been able to get them so
they don't spark each other off!

He is on anitriptaline for migraines and headaches to ward them off.
He is on sublingual Prevacid nightly for the acid reflux.  We have
sublingual Zofran for the nausea/vomiting and Imitrex nasal spray to
knock him out.  We tried the Ativan and it did not work.  The last
episode he had, we could not get it under control.  The GI now has a
protocol written up for him so we can have him treated ASAP when we
get to the ER.

The only Dr. we have found that has been able to help us is a GI.  The
GI dr. the kiddos saw up at Denver Children's Hospital told us the
kiddos did not have CVS or acid reflux but gave them a 3mo
prescription of prevacid to stop the inflamation she said they had.
Upon receiving a WONDERFUL AWESOME referral here from another CVS
mother, we have found the most awesome GI dr. who is doing wonders for
my kiddos!  I cannot say enough about Dr. Barrios.  He did all the
testing the other GI should have done!  He is also working with my
son's neurologist to help with the migraine's.

For my son, I have found that too much liquid milk, not enough sleep,
stress, heat, rough housing and illness can bring on a CVS episode.
He cycles about every 6-8 weeks.  He is the one we have to watch.  My
dd just cycles every 4 weeks.  There isn't anything we can find that
can bring on an episode.

I hope this helps!!

Terry

Terry, I was the one that suggested seeing Dr. Barrios. I am so glad that he was
able to help you!! I just referred another friend from church to him. He is
switching my daughter Madison off of Periactin and putting her on Bentyl
instead. I am hoping this will take the pain away. Good luck! Tracy
   ----- Original Message -----
   From: mamatlc2000<mailto:OneSmartCooke@...>
   To:
cyclicvomitingsyndrome@yahoogroups.com<mailto:cyclicvomitingsyndrome@yahoogroups\
.com>
   Sent: Monday, September 18, 2006 5:36 PM
   Subject: [Cyclic Vomiting Syndrome] Re: Meds for kids


   Elizabeth -

   Both my kiddos use the sublingual Zofran. It is WONDERFUL! It has
   helped with the vomitting and nausea with both kiddos.

   When my 6yo dd starts vomitting, I put the Zofran on her tongue and
   it stops the episode. Her CVS is very minor and helped with just
   the Zofran. She usually wakes up in the middle of the night or
   early in the morning, vomits, I give her Zofran and she goes back to
   bed.

   My 10yo ds is another story. His episodes are getting worse and
   longer. We give him Imitrex nasal spray to knock him out and the
   Zofran for the vomitting and nausea. We tried Ativan to knock him
   out and that did not work. The last episode, we could not get under
   control so we ended up in the ER. It took 2 hrs. before they did
   anything for him. I was so mad!!! I understand their need to make
   sure that is what is wrong but to make a kiddo suffer for that long
   was very upsetting. His screaming in pain was scaring the other
   children in the ER! They did x-rays, an ultrasound and bloodwork
   before they would do anything. They wouldn't even give him any
   liquids through an IV even though he was dehydrated. It was
   terribly frustrating! GGRR!!

   We are hoping this was a one time thing for him. In case it is not,
   the GI wrote us up a protocol so we can have him admitted for 24 hrs
   and then get him medicated without dealing without all the other
   stuff. There is no need to make him suffer!

   We have an EXCELLENT GI Dr. No one else would believe us nor did
   they know what to do for him. We got an excellent referral from
   someone on this list. If you are in Denver or Colorado Springs, Dr.
   Barrios is WONDERFUL!!!

   Terry





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

Elizabeth -

Both my kiddos use the sublingual Zofran.  It is WONDERFUL!  It has
helped with the vomitting and nausea with both kiddos.

When my 6yo dd starts vomitting, I put the Zofran on her tongue and
it stops the episode.  Her CVS is very minor and helped with just
the Zofran.  She usually wakes up in the middle of the night or
early in the morning, vomits, I give her Zofran and she goes back to
bed.

My 10yo ds is another story.  His episodes are getting worse and
longer.  We give him Imitrex nasal spray to knock him out and the
Zofran for the vomitting and nausea.  We tried Ativan to knock him
out and that did not work.  The last episode, we could not get under
control so we ended up in the ER.  It took 2 hrs. before they did
anything for him.  I was so mad!!!  I understand their need to make
sure that is what is wrong but to make a kiddo suffer for that long
was very upsetting.  His screaming in pain was scaring the other
children in the ER!  They did x-rays, an ultrasound and bloodwork
before they would do anything.  They wouldn't even give him any
liquids through an IV even though he was dehydrated.  It was
terribly frustrating!  GGRR!!

We are hoping this was a one time thing for him.  In case it is not,
the GI wrote us up a protocol so we can have him admitted for 24 hrs
and then get him medicated without dealing without all the other
stuff.  There is no need to make him suffer!

We have an EXCELLENT GI Dr.  No one else would believe us nor did
they know what to do for him.  We got an excellent referral from
someone on this list.  If you are in Denver or Colorado Springs, Dr.
Barrios is WONDERFUL!!!

Terry

Amber -

I have not read posts on this group for awhile.  Can you explain about
the back pain thing or tell me what post it is?  Also, what are the
two meds. the dr. has given you for your child?

>   the doctor gave us two new meds I have never heard of so we will
see what happens. One tightens the top of the stomach so everything
kind of goes down rather than up and one coats the stomach and

Terry

Good morning all. I'm going to unsub from this group
for now. My son was on a 7 day on, 7 day off, then 21
day vomiting spree when I joined the group. Drs
couldn't figure out what was wrong with him and I
found the CVS info online.

Some of his symptoms were right on the ball with CVS
but others werent.

They never found anything medical but they put him on
Prozac for anxiety and he hasn't thrown up since.

I will keep all of you in my thoughts and prayers!

Keep well,
Lissa O.



Lissa
Avon Ind. Sls. Rep.
www.youravon.com/lorourke

Hi April,

I'm new to the message boards, but my daughter has had CVS since 18
months old.  She's not almost 8 years. Zofran is a drug that has helped
her stay out of the hospital.  I just read a previous message that said
there is disolvable Zofran.  I'm going to check with my Dr.  Definitely
worth checking out.
Good luck,
Elizabeth





--- In cyclicvomitingsyndrome@yahoogroups.com, aprilgri <no_reply@...>
wrote:
>
> My son is 4 almost 5 and I wanted input on what other children are
> taking and how well it works we have tries propranol and periactin
> (only guessing spelling) and they do not work. If anyone has any
ideas
> please let me know.
> April
>

Hi April,

I'm new to the message boards, but my daughter has had CVS since 18
months old.  She's not almost 8 years. Zofran is a drug that has helped
her stay out of the hospital.  I just read a previous message that said
there is disolvable Zofran.  I'm going to check with my Dr.  Definitely
worth checking out.
Good luck,
Elizabeth





--- In cyclicvomitingsyndrome@yahoogroups.com, aprilgri <no_reply@...>
wrote:
>
> My son is 4 almost 5 and I wanted input on what other children are
> taking and how well it works we have tries propranol and periactin
> (only guessing spelling) and they do not work. If anyone has any
ideas
> please let me know.
> April
>

I believe my daughter has had CVS since 18 months old.  I thought at  6
1/2 to 7 years old she'd grown out of it.  No episodes until this June.
She had her first opthomology appointment and now has glasses.  The
dialation of her eyes triggered her vomiting again and she's had 4 more
episodes.  The last resulting is severe nausea but no vomiting.
     Has anyone found wearing glasses to be a trigger?

Thanks,
Elizabeth