Hudson's Initial Symptoms
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Hudson's Road to DiagnosisOn May 21st, several staff members at Zebra Zone, Hudson’s daycare pulled me aside to discuss how concerned they were with Hudson. They said they
didn’t feel comfortable with his earlier diagnosis(es). They saw both physical and emotional change in him, and knew something more serious was going on. They encouraged me to take him back to the doctor and insist on whatever it took to get him back to his old self. I had planned to take him to an allergist as soon as school ended, but I just trusted things would line out and the doctors knew what they were doing. if it wasn't for the awesome staff there, things may not have turned out so good for us. That was all we needed; a confirmation that we weren’t over-reacting. The very next day, he went back to see Dr. Bootin. We explained what was going on and that his daycare was very concerned. She took it very seriously and said that we would not stop until we had answers. She immediately took blood and an X-Ray. The in-office blood test showed now abnormalities and the X-Ray was normal also. She sent him to take blood at the hospital for more extensive lab results and put in orders for an MRI to be preformed the next day. She said that from her physical exam, she could tell there discomfort in his hip and that we knew him better than anyone. She wasn’t giving up. The next day, he finished his MRI and was almost home when we got the call. My heart almost stopped, when she said to bring him straight to the ER, they were admitting him to Texas Children’s Hospital. She explained that the blood tests revealed muscle breakdown and that the MRI showed every muscle to be inflamed. She told me that it could be a virus attacking his muscles, which everyone hoped for. Or, it would be very rare, but it could be Juvenile Dermatomyositis. Once in the ER, they took more blood and put a catheter in to get urine. They assured us the results were good; his kidneys were not currently at risk. The next day, he had to take a Barium Swallow Test to check if his throat muscles were working properly. It was more good news; although they had been weakened, he was not currently at risk of choking. That same day, he had to take an Electromyogram, or EMG. This is a test where they stick a needle that sends electric currents into several muscles to check the amount of muscle damage done. The results were both good and bad. There was no extensive or permanent damage; however, it lead doctors to believe this was not a result of a virus. They were pretty sure it was JDM, but they needed a Deep-muscle Biopsy to confirm. They told him that he couldn’t eat anymore that night, because he was put on the waiting list for an emergency biopsy. He had to go an entire 24 hours without food or drink, since they didn’t know when they could fit him in. The next day, May 25th, the muscle biopsy was preformed and it was confirmed that he had a mild case of Juvenile Dermatomyosistis. He was given a steroid infusion that same day, and it had an immediate effect. His rash seemed to disappear from his face and his had much more strength and energy. May 26th, he was given another steroid infusion, which sent his blood pressure plummeting. He drank some juice, and after retesting twice, he returned to normal. We scheduled his first infusion for the next week, in which the doctor would meet with us to discuss his treatment plan. He was discharged from the hospital and did great at home that evening and night. |