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I have just recently found the reason for our son Adam's repeated episodes of vomiting. While searching the Internet for information, I accidently happened upon the "Official Homepage of the Cyclic Vomiting Association." I immediately joined the CVSA and signed onto the CVS Listserve. I will let my e-mails to that group tell you the story of our years of searching for answers.
Before doing so, however, let me introduce you to my son Adam.
2/28/98
We need all of the information possible on CVS, from A to Z, please! I happened on the CVSA
web site two days ago, only by mistake. Thank goodness! After 12 years of searching, I believe
that we may finally have the answer to our son's illness.
At approximately two years of age, Adam began a series of horrendous vomiting. He would then
fall into an exhausted sleep. At times, this would or could be accompanied by drooling and
headache. This would always happen very late at night or in the very early morning hours, only
occasionally during the daytime hours. There were episodes, for a year or two, where he would
do this type of vomiting in his sleep, without waking. In the morning, Adam would wake, crying
and frightened, and we would rush to his room and find him looking like something out of a
horror film! One particular episode, which happened very early on in the day, Adam actually
vomited for a period time and then collapsed, seemingly passed out. (The doctors considered and
did test for seizures at that time.)
Now, at the age of 14, Adam still vomits just as profusely, with severe headaches, excessive
drooling, and quite often, extreme thirst during an episode. He will then fall into a deep sleep
(sometimes right on the bathroom floor!) and wake as if nothing ever happened. He does have
some periods with the same severe stomach pain, with no vomiting. Is this common?
We are so fortunate that Adam has not needed hospitalization in the past 12 years. His episodes
are violent, but short-lived. He is very easy to rehydrate. Adam is a very self determined, and
driven, young man. We may go a couple of months without an episode, and just as we begin to
relax, WHAM, it hits again! Adam has been through every test imaginable, with no other
diagnosis other than, "Adam is a very intense boy, who sets high standards and expectations on
himself, which in turn sets the stage for extreme stress in his life."
Our only relief, which is also an added grief, is that about nine months ago, a doctor began
treating Adam for migraine headaches by starting him on 120 mg. of Verapamil at bedtime. We
were told that after three months of treatment, as with most teenagers, he would then discontinue
the Verapamil and be fine. No such luck! One night without Verapamil sends Adam directly into
an episode! He continues with the Verapamil and his new pediatrician has now prescribed Imitrex
for the migraines and vomiting episodes.
I KNOW after reading all of the information on the CVS site, and all that each of you has written
here on the list serve, that our son suffers from this dreadful syndrome. What steps should we
take now? We have a brand-new pediatrician in the past month and he has been practicing for less
than a month. Please help us!
Even at 14 years of age, Adam shows no signs of growing out of this yet. We see some evidence
that food may possibly trigger some episodes, lack of sleep, and stress. Is this a possibility?
Could you please tell me more of what drugs are or can be prescribed? What they do and how
they help? We live in St. Paul, Minnesota. Are there any doctors here, or near here, that are
qualified to diagnose CVS? We need all of the information and input from all of you that we can
possibly get.
I can't possibly tell you what a relief it is just to know we truly are not crazy after all these years,
and that we are not out here all alone anymore! After 12 years I believe we may have finally found
the answer! Thank you!
Julie (mom to Adam, 14)
3/4/98
Hi, Everybody! After first learning of CVS and joining the Listserve I wrote explaining a bit about
our son Adam's history and the dilemma of having a new pediatrician. I have been reading each
and every piece of mail you are all sending back and forth, trying to learn all that I can. I still have
many questions.
Do most of you (either adults with CVS or your children who suffer with CVS) see GI specialists or neurologists? What do
you recommend? Are any of you familiar with doctors in the Twin City area who are qualified to
diagnose CVS? I ask this because if we need to go out of network I would like it to be the doctor
who is the most informed, considering we would need to pay for it ourselves.
Any ideas on the kind of approach we should take with Adam's very new, and very new to us,
pediatrician? I do not want to seem like I'm the person diagnosing here, but . . .
Yesterday I saw the medication list from Kathleen, but I would like a better understanding of
what may be expected from each individual drug in regard to its use with CVS. After all of this
reading I do understand the drug, Zofran. As a person who has past personal experience with the
medical community's wonder drug, Cisapride, I would like to say I am skeptical of its use! I
would like to hear more from all of you on how you see it working for yourselves or your
children.
I am also very curious about anyone of you who can actually pinpoint triggers of any kind, but
especially in the food area. We definitely know that lack of sleep, stress, whether negative or
positive, and certain foods trigger episodes for Adam. Somewhat like asthma and allergy triggers,
it depends on combinations and the strength of the triggers, as to what kind of episode you will be
facing.
I still have many unanswered questions, but will save them until I
receive our information packet from the Cyclic Vomiting Syndrome
Association. Also, until after 12 years of being ill, we actually have a
specific diagnosis of CVS for Adam. Thanks to all of you!
Thanks, again!
Julie (mom to Adam, 14)
November 1998 Update
It has now been nine months since finding the Cyclic Vomiting Syndrome Association.
Adam is much better now than he was a year ago at this time.
In May of this year, we took Adam to the University of Minnesota, to consult with a
pediatric neurologist, as we were having a difficult time getting a diagnosis from Adam's
pediatrician, one way or another. Originally I felt we were going to face the same problem with
this neurologist until we met his Chief Resident, Dr.***. Luckily this resident was from Missouri,
had met Dr. Fleisher, and had exposure to CVS. He wholeheartedly agreed with me that Adam
suffered from CVS, in the subgroup of migraine variant. After some quibbling between the two
doctors over which medication and dosage to start Adam on, we finally left the University Clinic
with a script for Inderal, a treatment plan, and follow up appointment. After 12 and some half
years a doctor not only believed us, but was willing to attempt trying some different medications
to help! We were to start the Inderal, combined with Imitrex for migraines and vomiting episodes,
and come back in six weeks for a follow up appointment. In four weeks the side effects form the
Inderal were getting to be too much for Adam. After any type of physical activity he would
become so lightheaded he would come close to passing out. Adam also was suffering
breakthrough headaches and had two vomiting episodes during this time. I promptly called the
resident we saw at the University, who in turn put plan "B" into action. Adam stopped the Inderal
and began 10 mg.of Elavil for seven nights at bedtime, then to increase to 20 mg. at bedtime for
one week, to end with another 10 mg increase to 30 mg. a night at bedtime. After reaching the 20
mg. level for one week Adam was feeling so much better that the doctor suggested remaining at
the 20 mg. level for the time being. The only side effect Adam has suffered from taking the Elavil
is being tired in the morning. The doctors tried changing him from the Elavil, to a related drug
called, Nortriptyline. Adam rapidly went into an episode with a raging migraine. Adam begged to
go back on the Elavil! After calling the doctor again, he immediately put Adam back on the Elavil.
Adam went back to the 20 mg. regimen, but now takes the medication at least two to three hours
before bedtime whenever possible. This works very well for Adam. He has had to stop using the
Imitrex due to not being able to tolerate its side effects. It causes him nausea, and to become
shaky with flushing. At this time he uses Elavil on a daily basis, with Zofran and Phenergan to
abort or ease breakthrough episodes. Every six weeks, just like clockwork, Adam still shows signs
of having an n episode. He is tired, has stomach pain, which may or may not include a bout of
vomiting, and, or diarrhea. Adam finds this annoying, but it is so much more bearable than ever
before. We are very pleased with the success Adam has reached with this drug regimen and pray
that it will continue for a long time to come!
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NOTE: I feel it important to point out here that the medications
and dosages listed above are only what Adam's physicians have chosen to try for his treatment. There are many medications that are being used in the treatment of CVS and may be used in dosages that are far different then those Adam is taking. The meds may or may not have worked for Adam and if they do, they still may not be the correct medication or dosage for your child. The information on medications is given only to give you some ideas to discuss with your child's physician.
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