Dominic’s Journey with Juvenile Dermatomyositis

Dominic was always a happy little boy. He had some health problems as a baby and was hospitalized a couple of times. He was diagnosed with asthma before his first birthday, but unless he had a cold, or the flu it was never a problem.

When Dominic turned 5 years old I took him to the doctor’s for his check–up and vaccines. He had a rash on his face that looked very much like the eczema he had as a baby. The doctor checked it and prescribed some cream for the rash. The first cream did nothing so we were back at the doctor’s 2 weeks later, more cream. Just over a week later his daycare mentioned that impetigo was going through the center and pointed out some marks on Dominic’s knuckles. Back to the doctor’s we went. One look at his hands and the doctor agreed that it looked like impetigo.

While all this was going on the daycare also mentioned that Dominic had to be carried to the library and back. The following week they took a stroller for Dominic and he used it, which surprised them all. Dominic loved to walk everywhere. He could walk the whole zoo and not get tired. He was complaining to me when we did our weekly walk for groceries. I started bringing the wagon in case he got tired. Then a few weeks later we went to grocery store and Dominic wouldn’t even walk a block.

He was crying that his foot hurt. Off to the ER we went. They took Dominic’s history and x-rayed his foot then put him in a soft cast for a week. They thought that maybe he had a fracture in his foot. We went back and forth to the orthopedic surgeon for weeks. More x-rays and ultrasounds to see if there was something they were missing. They noticed that his hip flexors were very tight. All this time and my poor little angel was getting weaker.

I woke up one morning and Dominic couldn’t even put his own socks on, or get up off the floor. I pulled him out of daycare and we went off to the local children’s hospital. We arrived at the hospital mid-afternoon. I remember asking the triage nurse if they could check his rash while we were there. She didn’t think it was important to the diagnosis or why my little man was so weak. By 4:00 in the morning Dominic couldn’t even raise his head off the bed. The doctor came in to tell us that all the blood work was back and it looked like Dominic had Juvenile Dermatomyositis.

I was stunned.

I couldn’t even pronounce the name of this disease that was attacking my baby. He was admitted that night and was to see the rheumatologist in the morning. That was April 23, 2007. Dominic spent 2 weeks in the hospital. Many tests were scheduled; MRI, CAT Scan, EMG, Ultra sounds and more blood work. IV therapy was started with high dose steroids. A speech/language pathologist was consulted as Dominic had started choking on his food.

Two more hospitalizations, four and a half years of treatment and an NG tube at one point, along with many medications, shots and IV’s, as well as months in a wheelchair. His wheelchair is still used periodically when we spend the whole day out walking, or when he is tired. Dominic was also diagnosed with Fibromyalgia in the fall, which causes him to tire easily and spend time in pain. The symptoms are very similar to JDM and make it hard at times to know which one is acting up. His rheumatologist said he has seen a few cases of children with JDM and Fibromyalgia. He is still getting IV treatments for osteoporosis, brought on by the high dose steroids, but that may end soon. His bones are getting stronger along with the rest of him.

Dominic has missed out on a lot of his childhood with JDM. He has not been allowed on any climbing equipment or played any contact sports. His gym class at school has had to be modified and he has missed a lot of school. Years that we will never get back, but I have my little man and that is the most important thing.

Today, just over 6 years after diagnosis Dominic is off all medication for his JDM. The doctor has not declared remission yet, but we are hopeful. Dominic still has some endurance issues and tight muscles, but he is so much better than he was in 2007. We will always have to be careful and watch out for the monster lurking within, but with faith, family and good friends we will survive.

For more information on Juvenile Myositis, including Juvenile Dermatomyositis please visit:
www.curejm.org