WE MOVE
204 West 84th Street
New York, NY 10024
E-mail: wemove@wemove.org
wemove.org • mdvu.org
Something Is Wrong With My Baby
Believe in yourself. If you think something is wrong with child, fight until you get answers. If all else fails...video tape it!
– Kendra Barker
When my daughter Kaylee was born, we were overjoyed. It took me three years and two attempts at invitro to become a mom. When she was just about a year old I noticed her legs. All of a sudden Kaylee would bury her head into the floor, hold her breathe and not make a sound. At the same time her toes would curl in, her legs would shake, stiffen up and turn purple. This would happen at all times of the day. It was very scary to watch. If we stood her up, she would fall back down and do it again. Her legs were so stiff, that neither my husband nor myself could straight them. She never cried or complained, so I waited until her next check up to discuss it with her doctor whom told us she did it because she could. Well, it kept getting worse. Finally I video tapped an "episode" to show to her doctor. She couldn't believe what she saw and referred us to an orthopedic doctor at Children's Mercy. Months later the orthopedic saw the tape and told me that he thought Kaylee had dystonia and needed to see a neurologist. About two months later I met with one and confirmed that she did have focal dopamine responsive dystonia. I then began my campaign to find answers, treatment, and a doctor (took us three) that Kaylee and I both liked. Overall, it took me three years to get a diagnosis. She has undergone an MRI's and a spinal tap before we truly knew what we were dealing with. Now Kaylee takes carbodopa three times a day and is a happy, healthy kindergartener.
