Cyclic Vomiting Syndrome...It's Not Pretty
C was diagnosed when she was 3 by a pediatric neurologist in Providence, RI. I had already self-diagnosed after MUCH research. I needed someone who actually represented the medical profession to confirm what we thought...we did not let on about our self-diagnosis.
C started out having episodes 50 some-odd days apart. After careful tracking and note-taking, we started to notice patterns. Vertigo in the morning upon waking, meant cyclic vomiting was coming that night. That has been a constant. C is also considered to be a "calendar kid", meaning her episodes are brought on by time, not by stress or excitement. She now has episodes every 70 some-odd days.
Cyclic Vomiting is vomiting which occurs in a pattern. Some kids (and adults) suffer for weeks on end, often ending up dehydrated, and in the hospital.
Food, Excitement, and simply time can be triggers.
Some people find medications are helpful. We have chosen not to medicate. Many of the medicines we were encouraged to try have never been tested on young children. We felt that for the number of episodes C was suffering each year, daily medication was not the answer.
Vomiting often comes on in the night, and continues through until morning.
For C, this last episode was odd. Usually they last 1 night. She slept til 3:45 the first night. Then the second night she started vomiting at 11:30 pm. She had hideous nausea, EXTREME stomach pains, and vomiting until morning. She gets anxious, and extremely sensitive to touch, sound and light. When morning arrives, the cycle is broken. We were told that the body is trying to rid itself of SOMETHING, and until it is gone, the cycle continues.
We attended a Cyclic Vomiting Association conference in Boston several years ago. Doctors from all over the world attended. They are still unsure of so many things...brain based or stomach based? What triggers this? Is it hereditary?
And most of all, how can we CURE this?
C also suffers from Celiac Disease. She has been gluten free since May. Still no connection to the Cyclic Vomiting Syndrome.
With a pale face and tired eyes, C told me this morning..."I told God he needs to let me live to a thousand." When I asked why, her reply was "Well, he made me have a hip brace, a helmet, CVS, and Celiac....it would only be fair." Her eyes twinkled through the exhaustion. She knows she is special, and that she is here to help us all learn to be strong. From a mom's point of view, it just doesn't seem fair.
If you know dr's and nurses, please ask them to get educated about CVS. It is still not fully understood by some members of the medical community, especially in emergency rooms. Help educate friends and family.
I'm still hoping to get Ellen DeGeneres on board. She always seems to make thing happen. : )
Check out CVSAonline.org to become more informed.