Sorry but I like to vent. My son, Riley, will be 9 in January. In Oct of 2002 he started to loose energy. Living in the Lyme disease capitol, he was treated twice for the disease by the pediatrician. Then in December he started to develop a rash on his face and his joints. We took him to a dermatologist and was treated for eczema. Then in Feb 2003 the poor guy could not get off the couch. We took him to a Lyme disease specialist who said that he did not have Lyme disease but to see the dermatologist again. So, back to the dermatologist’s office where a new physician’s assistant said that he recognized Riley’s symptoms from a textbook he had recently read. The Dr. came in and confirmed the diagnosis. They shipped him directly to Yale New Haven Children’s Hospital. We spent a week there and was told that he had a very rare form of Muscular Dystrophy called Juvenile Dermatomyositis. I am told there are only 2000 kids in the US with this disease. He was put on a high dose of prednisone (75mg/day). He started to taper off the drug in May when he was able to go back to school. He progressed well though the summer tapering down to 25mg/day. In November, he slid back significantly and was out of school for 3 weeks. Tuesday he did not look well and my wife called Yale. Our Dr. up there said bring him in on Wednesday.
Wednesday, we saw the Dr. and the decision was made to put him on this stuff called Methotrexate which is used for rheumatoid arthritis and as a chemo drug. Then yesterday, he went for his eye exam that he needs every 6 months because of the prednisone and his disease. The eye Dr. told us that the prednisone is now causing cataracts and glaucoma.
It just seems that every day, I wake up and someone kicks me in the stomach. All this, after losing a brother firefighter in a fire on Tuesday. Will it ever end? Everyone says that the man doesn’t give you more than you can handle. I don’t know about that!!
Hope your holidays are better
Wednesday, we saw the Dr. and the decision was made to put him on this stuff called Methotrexate which is used for rheumatoid arthritis and as a chemo drug. Then yesterday, he went for his eye exam that he needs every 6 months because of the prednisone and his disease. The eye Dr. told us that the prednisone is now causing cataracts and glaucoma.
It just seems that every day, I wake up and someone kicks me in the stomach. All this, after losing a brother firefighter in a fire on Tuesday. Will it ever end? Everyone says that the man doesn’t give you more than you can handle. I don’t know about that!!
Hope your holidays are better
