For the past 10 years, I have had the privilege of taking care of children every day as a part of my job. Some of them are quite healthy--and just need a minor surgical procedure. Others are critically ill. For the most part, after my clinical day wraps up, I have had the ability to leave work at work and go home to my healthy kids.
All that changed last week.
Well, really it changed months ago, but we just didn't realize it. For over six months now, Ethan has been complaining of pain in his hip. I attributed it to "growing pains". I brought it up to his pediatrician at his 10 year-old check up. She examined him and agreed it was not likely something to worry about. Fast forward to July, and Ethan was still complaining about the pain. He also was starting to walk more slowly, and his gait had changed. We contacted our pediatrician again who sent off some blood work (which was normal) and referred us to an orthopedic surgeon. Since I work with the surgeon, I talked to him at work, and he recommended some x-rays. The films were normal. We made an appointment for a few weeks later.
Meanwhile, Ethan started school. His new school is about a mile from our house. When I walked him to school the first day, I was shocked by how severely he was limping. At a soccer game the following weekend, a friend of mine asked why he was running so strangely. I talked to the surgeon again. He recommended an MRI before our appointment.
The MRI showed severe inflammation in Ethan's pelvis and spine. Instead of seeing the surgeon, we we referred to a pediatric rheumatologist. Based on his MRI, and some later blood work, Ethan was diagnosed with juvenile ankylosing spondylitis. This condition is a severe autoimmune disease whereby his immune system basically is attacking his joints in his spine and pelvis.
I cannot explain how horrible I feel about everything. I have been pushing Ethan to walk and run faster, telling him that he has to play soccer better, stop complaining etc. Meanwhile his joints were getting eaten apart. In retrospect, it makes sense--he hasn't been growing as much recently--he always was a taller kid in his class, but in the past year many shorter kids have grown taller than him. But his body has been too inflamed to grow at the same rate. Stiffness is a hallmark of this disease. Even Ethan's basketball coach this summer noticed how stiff he was--and sent him home with special stretches. But, now we know that none of this was his fault. It is a lot for me to process.
I feel especially bad since Ethan lives for sports. He simply loves playing them, and all of his friends are sports kids as well. But obviously, his condition has affected his skills and ability, and I think that this has effected him socially quite a bit--we are just putting this all together now.
Since the diagnosis, he has started on high-dose naproxen. That has actually helped. His gait is not normal, but it looks much better. He still has pain, but it is less.
The next step will be to start him on a medication called Enbrel. This medicine is an injection that he will get once a week that targets part of his immune system. Unfortunately, because it acts to suppress his immune system, there are some very serious risks associated with taking it. But it is really the only option. We are waiting to get insurance authorization for it, as it is ridiculously expensive.
It is really hard, as a mom to have a child with a chronic medical condition. If nothing else, it has helped me better empathize with the moms of all of the chronically ill kids that I care for, and hopefully it will make me into a better doctor.
I hope he starts to feel better soon.
