– Submitted By: Sarah S.
Our daughter Anna, is currently 16-years old. CVS rocked our world for the first 5 3/4 years of Anna’s life. And I mean ROCKED, in a bad way. People kept asking me “why is Anna sick all of the time?” I had no idea. I thought kids just got sick. I honestly didn’t know. Then she started to get worse and worse each time. Throwing up way too often. I started to make notes in my calendar how often. It DID seem like it was more often than not, after all. It was every 11 weeks. To the day. To the hour. (That’s one of the aspects of “cyclic” vomiting syndrome, as I soon learned.) I didn’t understand why. And as she would be throwing up, it would start out as once an hour, for a few hours. Then once every 30 minutes…then every 16 minutes for a few hours…until it was every 8 minutes. For hours. (That’s another aspect of “cyclic” vomiting syndrome) Until she could get on an IV in the hospital. It would take at least a few days on an IV to get her back to normal. People wonder why she’s so quiet and reserved. The poor girl was in and out of the hospital so often for so many of her formative years. Poked and prodded for days on end. I’d be reserved too if I had gone through that.
Finally, at age 5 3/4, her body had had enough. It shut down. She went into multi-organ failure. She was in a medically induced coma for 8 days. We were told she most likely would not live. No one, NO ONE could explain to us what was going on. My husband and I were even questioned, as if we had contributed in some way to her organ failures. It was the worst and saddest experience of our lives. THANK GOD, (very long story short), after a month in the ICU, she bounced back. Our doctor told us she was a miracle. We are forever grateful and we will NEVER forget.
Following this traumatic time in the hospital, we visited numerous specialists. Then, her amazing immunologist called and told me about CVS. He had his suspicions that she had CVS. After many calls, we discovered that no one in Florida could help her. That’s all it took. I researched the heck out of it. I reached out to the CVSA and then Dr. Li at the Children’s Hospital of Wisconsin. He agreed to see us, and the rest is history!
We visited Dr. Li every year. (We made a vacation out of it and still go to Wisconsin every summer, even though Anna doesn’t see Dr. Li anymore. It’s now our happy place to visit ) Dr. Li worked with the amazing geneticist, Dr. Boles, in CA, and the two together discovered where her body is deficient. Anna is what they call a “calendar” baby with her CVS. It’s cyclical in nature on the calendar and also in how often per hour she would get sick.
Dr. Boles discovered that Anna’s body is unable to make antioxidants on its own…so she has to take antioxidant supplements two times a day. Without these antioxidants, when she gets sick, her body becomes toxic, hence the organ failure. She takes 4 supplements in the morning, and 9 at night, including amitriptyline, for her migraines. And she NEVER complains. NEVER. Dr. Li told us that she was one of the worst he had seen, in terms of how her body reacted to the vomiting…yet her response to the amitriptyline (and other supplements) was one of the best cases he had seen. Her CVS was stopped in its tracks.
She has not had a recurrence since 2014! These doctors…and supplements have saved her life. WE ARE FOREVER GRATEFUL.