Those of you who have been hanging out with me for a while know a bit about cyclic vomiting syndrome.
Our 10 year old, C, was diagnosed with this migraine related disorder at age 3.
A bit of background: CVS is a disorder that still perplexes the medical world. It is thought to be migraine related through the maternal line (although ours is VERY strong on the paternal side). It is a disorder that can rear its ugly head with severe bouts of nausea, stomach pain, vomiting and vertigo. There are many known triggers….chocolate, cheese, and other foods; stress….good or bad ( a birthday, or a test for example); an illness, such as a cold, a virus, or the flu; and as is our case, TIME.
Our daughter is in an every 80 some odd day pattern. She made it to 83 days the last time.
After waking to severe vertigo this morning, we know she will get an episode tonight. We will be ready…with bowl, hair elastic, water bottle and roll of paper towels. I will sleep with C and be there through the severe gut pains, the over the top nausea, and the vomiting so severe it makes a mother wish she could trade places with this little person who does not deserve such trauma. The vomiting will come every 15 minutes all night, and the spell will be broken at daylight. After that, a very tired little girl will lay low for the day. Unfortunately, vertigo kicks in, and even a slight movement of the head can cause blinding vertigo. Last episode this lasted for a week, causing more nausea and vomiting; however, for C that is very unusual. She usually misses a day or two of school….but this time she also had the flu, so it made the episode much more difficult. She also missed a week of school.
Sound odd? Even unreal? Believe me, we know. We live it. She lives it. And my purpose in writing is to let others out there know that we understand!
There are good doctors who specialize in this disorder. Wisconsin and Boston have amazing doctors ready to help at a moments notice. Unfortunately, our trip to Boston was useless. It's not good when you feel like you know more than the doctor. We have been given a new name at Mass General, a Dr. Russell, and we will look into meeting with him. Dr. B.U.K. Li at The Medical College of Wisconsin is an expert on this disorder. He is fighting to find the causes and to develop treatments.
There is also an organization called CVSA that has been on the front line with treatment ideas, medical resources, lists of supports groups and medical professionals. They also run a yearly conference with experts from around the globe.
In between episodes, C is amazingly well. She wore a hip brace, had tortocollis, a helmet, and has Celiac Disease. Really? Because when I see her I see joy and a love of life. I see a little girl who cannot wait to have a garden this summer….who LOVES to sing….who things 4 square should be an Olympic event, and who is kind and helpful to others.
SO PLEASE DO C AND I A FAVOR.
TELL ONE PERSON ABOUT CYCLIC VOMITING SYNDROME.
WE ARE FIGHTING TO FIND A CURE…OR AT LEAST A SUCCESSFUL TREATMENT.