My daughter Sarah is 6 and has had CVS since she was 6 mo.s old . Currently the
only medicine she takes is Zofran during her once a month episode and as she is
SO predictable time wise with the onset of her illnesses , I can give it to her
before she has a full blown throwing up day ( she has a preday where she gets
sick for half a day before getting totally well then the 2nd day she is sick all
day with 30 to 40 times vomiting in a few hours , migraine like symptoms,
photosensitivity , and lots of dizziness. , the 3 rd day she recovers and is
usually totally well by the end of that day.) So after trying every medicine
possible including those your child was taking and bulbutal , verapamil, and
lots of others migraine meds, nothing helped so just recently I also said okay
enough as there really is nothing else to try at this point and nothing helped
on a daily basis and not we just give Zofran during the episode to try to lessen
the throwing up . That is what it does , it is an
anti emetic which they often give to cancer patients before chemo to lessen
vomiting after it. It does help to decrease Sarah's vomiting to about 10 times
on her full blown day and sometimes to no vomiting on her preday . The kind we
get dissolves under her tongue so that she doesnt have to swallow it like a pill
which she would only vomit up so it goes right into their system. So it is kind
of the best you can do .
Once they put Sarah on Topamax and she was like a zombie and couldnt even
say her alphabet , of course she went off of that immediately. We havent been
to the Chicago CVS unit. Like you , we just decided that dealing with it on a
monthly basis is just a part of life now that we try to plan things around.
But she suffers so much and she is just so accepting of it , only now starting
to say , I hate those migraines....I still wonder if I should go to the Chicago
unit and what help they would be there ....no medicines really seem to work on
it , even the CODE V CVS newsletter says there is no known cure for it. So why
put our kids through more of that when nothing helps? Sarah is also a twin and
her twin doesnt have it. We used to see the child neurologist every 3 months
but now since we ran out of meds to try , we are going every 6 months. So that
is our story .
We live in lower NY , where are you located? I keep hoping that she
outgrows it as they say it is more often in children than adults but somehow I
cant imagine it at this point. She has missed holiday , birthdays , and
vacations. A recent trigger to an episode besides time passage has been cold
pool water. If it is too cold , she will begin to shut down and go into a
"migraine" ( we call it this for ease of naming it) and will have to be put in a
dark room under blankets for a few hours to get over it. She also cant spin in
concentric circles. Okay so that is our deal......try the Zofran as it can be
used for children and is about the only thing that does seem to help even a
little. Later...

cmlamkins <cmlamkins@...> wrote:
Hi everyone, it's been awhile since I posted anything, my son's
episodes have spaced out to once every 3 month for the past 9 months
so I've been blessed to not have to think about it much. I am
interested in learning more about Zofran. The doctors have but him
on Inderol and on Cyproheptad. Each medication was prescribed for
twice a day but the Inderol put him into a depression and the
Cyproheptad knocks him out for the entire day. I had asked the
doctors why he needs to take something twice a day, everyday when he
only gets sick every 3 months (though he has had episodes as close
together as a week and a half). They had no explanation other than
that was how those medications were prescribed. Needless to say he's
not on any medications right now. I decided that vomiting for a day
every 3 months was better than dealing with side effects from
expensive medicines that have to be taken so often. After reading
the many posts on this message board I became curious about Zofran.
I hear so many of you saying that you can take it when the nausea
starts and that the episode is much less severe. That sounds ideal
for my son. I would love to help him however I can. He is only 3
years old. Is Zofran approved for children? How fast does it start
to work? Does it ever stop an episode or does it just lessen the
symptoms? Does anyone know how it works or what kind of medication
it is? My doctor is very hard to reach and since my son's episodes
are so spaced he tends to lose track of us. I'd appreciate any help
you all can give me. Thanks so much!!


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