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    Posted January 29, 2014 by
    andersen73
    Location
    Cedar Rapids, Iowa
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Fighting With Cyclic Vomiting Syndrome

     

    CNN PRODUCER NOTE     andersen73 says it's been two years since Ali was last hospitalized for cyclic vomiting syndrome. Despite her condition, the 11-year-old is involved with robotics at her school, plays basketball and volleyball, and throws shot, discus and turbo javelin for track and field. To play basketball and participate outside for track and field, she has to wear an ice vest to keep her body temperature from getting too high.
    - dsashin, CNN iReport producer

    I never expected my little girl to have to fight a battle with a foe she couldn’t see. At the age of one, she did.

     

    Ali was thirteen months when her first horrific vomiting episode started. After a day and a half of throwing up off and on she had to be admitted to the hospital. She was so dehydrated that the only vein they could put the IV in was in her forehead. I hated seeing her like that as I held her on my chest. We watched the rest of those that were around her watching for stomach bugs. No one else was sick. It seemed odd she was the only one.

     

    The vomiting episodes didn’t go away. In fact, they came back every three weeks like clockwork. During the days in between each episode she would watch the other kids in daycare play, too weak to get up and join them. She wore clothes out before she outgrew them.

     

    Every time Ali was in an episode, I was on the phone with the doctor. I received the same answer every time. It’s a virus. After about six months of my constant phone calls, the doctor was at her wits end with me admitting it could be something other than a virus. She mentioned Cyclic Vomiting Syndrome(CVS). I ran with it like a dog with a bone.

     

    I asked every gastroenterologist I could think of about it. I finally e-mail the head of pediatrics gastroenterology at the University of Iowa Hospitals and Clinics and asked if her symptoms could be CVS. He responded he wanted to see her immediately. We made the appointment, he ran the tests and it was confirmed – my now two-year-old daughter had CVS. The bad news – since she was so young he didn’t know of any treatment. He prescribed medicine without the assurance it would work.

     

    In the meantime I researched CVS. I found the Cyclic Vomiting Syndrome Association website. I also discovered that the expert in pediatric CVS, Dr. B.U.K Li, was at that time in Chicago. I asked the GI doctor at UIHC if we could get a referral. He was delighted. Two weeks later, Ali was seeing Dr. Li and she was put on the correct medications. Within the month she was playing, laughing and growing. Just like any other normal child.

     

    Today Ali is eleven. She plays volleyball and basketball. She loves learning programming for her school’s First Lego League robot. She is sassy, beautiful and funny. And she still has CVS. She takes daily medication to control it. She has a special crème she can put on her wrists to stop an episode. She has been hospitalized six times. Her older brothers, father and I have all her rituals down to a science.

    I’ve taken a unique method to help her in her fight. Two weeks ago, I released a sports romance novel through my publisher, Secret Cravings Publishing, called Breaking the Cycle. In it, the heroine battles with CVS and the hero helps her discover what it is. It’s my way to get awareness of CVS out to the world so more people know and understand this devastating disorder.

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