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Gentry’s two diagnosis alone are rare. Gentry is likely the only one in the world with both. Treatment for one, negatively affects the other. They both have the potential to be life threatening. He is the only patient at Childrens in MN where we live to ever have hypok period paralysis. His specialist for it is in TX. He is the only Dr in the United States who specializes in kids with his condition. We travel to see him about once a year from MN. Gentry is hospitalized regularly and as his parents we are his experts. We have very specific emergency letters, but coming to the hospital with your child who is extremely Ill and knowing that you know more than the Drs about your child’s condition, is a very scary feeling. Getting a Dr who won’t admit they need advice from the specialist is even even scarier! His most recent hospital stay this week, the senior resident said that this is the first time any of them have ever even heard of his condition. They always consult with his endocrinologist as well as his specialist in TX. He was diagnosed with his panhypopituitarisum as an infant, and although symptoms started at a few months old, his diagnosis of periodic paralysis was not made until he was 4. We heard about your organization through Hopekids.
