Cyclic Vomiting (part 1)

I think some people think I am crazy. 

I mean, how do you explain something called 'cyclic vomiting'?!?

No one has really ever heard of it and no one knows why it happens, but let me assure you...IT. IS. REAL.

So, what is cyclic vomiting syndrome (CVS)?

CVS is characterized by episodes or cycles of severe nausea and vomiting that last for hours, or even days, that alternate with intervals with no symptoms. Although originally thought to be a pediatric disease, CVS occurs in all age groups. Medical researchers believe CVS and migraine headaches are related.

Each episode of CVS is similar to previous ones, meaning the episodes tend to start at the same time of day, last the same length of time, and occur with the same symptoms and level of intensity. Although CVS can begin at any age, in children it starts most often between the ages of 3 and 7.

Episodes can be so severe that a person has to stay in bed for days, unable to go to school or work. The exact number of people with CVS is unknown, but medical researchers believe more people may have the disorder than commonly thought. Because other more common diseases and disorders also cause cycles of vomiting, many people with CVS are initially misdiagnosed until other disorders can be ruled out. CVS can be disruptive and frightening not just to people who have it but to family members as well.

(Taken from the US Dept. of Health and Human Services) 

My daughter started having these episodes a few years ago...possibly as early as 3 or 4 years old. They started out so sporadic and spread out that we just chalked them up to a stomach virus or something she ate.

Here in the last 2 years though, her episodes have really kicked things up a notch. This is when we knew something more was going on. 

We were told that our daughter most likely had a dairy intolerance. Our son had a dairy intolerance when he was younger and limiting his dairy intake did wonders for him and his occasional upset tummy. Makes sense...so we started limiting hers as well. It did help for the day to day upset tummy trouble she would have occasionally, but it still didn't account for these vomiting episodes she was having.

We took her to the doctor several more times. The first few diagnoses being constipation because of the amount of gas they could feel bubbling around in there. This one was hard for me to understand because, for the most part, she has daily bowel movements. Don't get me wrong, she does get constipated from time to time (as we all do), but it just didn't make sense to me. Nevertheless, we started her on Benefiber...sprinkling it into her foods each day. That didn't really seem to make a big difference, so next we were told to try Miralax. Then it was Miralax as well as an enema when her episodes started. And let me tell you...she HATED those enemas. Besides that, they didn't help! 

A few months ago, we went back to the doc and she was diagnosed with Cyclic Vomiting Syndrome. She was also prescribed Zofran for when the vomiting episodes started. Sometimes it helps, but sometimes it doesn't. However, nothing helps with her severe lower abdominal pain that is present nearly every time she has her vomiting episodes.

We were also referred to a local pediatric gastroenterologist. That man was a quack!  I was told by MANY people not to go to him, but I didn't listen.  What was worse is that HE didn't listen to a word I said. Without ever even looking at her, examining her, or even looking at her food diary I had been keeping, he had his mind made up that it was acid reflux. Seriously!?! Our pediatrician had looked into that early on in her treatment, but ruled it out as to it being the cause of her vomiting. When I tried to tell him this or question him about the diagnoses in combination with her lower abdominal pain, he'd shrug me off and talk over me never letting me finish a sentence. I know what acid reflux is, my husband deals with it all the time, but this was not acid reflux. 

So, we (yes, my kids were present through all of his unprofessional behavior) politely waited for him to finish his rant, then he stormed out of the room. We left and never went back.

Meanwhile, just last week, my daughter had another episode...