Sunday, February 20, 2011

Haven's Mysterious Condition Identified as ROHHAD


READ ABOUT HAVEN ON HOPKINS WEB SITE!!!! BELOW IS A CLIP --- CLICK HERE FOR THE COMPLETE ARTICLE!!!


Haven Fowler was born a healthy baby. She remained so until the age of two and a half when she began to gain weight very rapidly, gaining 40 pounds over eight months. She also started having unusual neurological symptoms, including hallucinations, sleep-eating and sleepwalking, irritability and profuse sweating.

Month after month, Haven’s parents took her from doctor to doctor, each one increasingly bewildered by her mysterious symptoms and unable to find an answer. Finally, the Fowlers — then living in California — were told that if they wanted answers, they needed to go to Johns Hopkins. And so they did. About three weeks after her cross-country trip to Baltimore, Haven suffered a serious seizure, which landed her at Hopkins Children’s, where the mystery of her condition eventually would be solved.................................... READ MORE!!

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ROHHAD in Ireland

 I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...