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When Your Child's Rare Disease Journey Starts to Affect Them Mentally

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I’ll never forget the day my son was diagnosed with Legg Calve Perthes disease. He was eight years old. The doctors thought it was growing pains. “He’s a big boy,” they’d say. One told us the pain was psychosomatic, thinking he was under too much pressure, since his dad was his football coach.

We finally took him to a chiropractor. I thought a good adjustment would help. Since he was complaining of hip pain, the chiropractor asked if he could take an X-ray of the hip. As he was looking at it he said to us, “I think he has Perthes disease. I’ve never seen it, but from what I’ve heard about it, this is what he has.”

Then, the search for an orthopedic doctor began. The first one we saw laughed at us when we explained how we received the possible diagnosis. After looking at his own X-ray of my son, he came back and apologized for being wrong. He looked at my son and said, “Well kid, it looks like your football career is over before it even starts. You can take up swimming.”

My son burst into tears, he was a three-sport athlete by age six, playing football, basketball, and soccer. Sports defined him. The next doctor told us all we could do is wait — no running or jumping. All we could do is wait for the ball of the femur to regrow. Seriously, how do you keep an 8-year-old boy with a 6-year-old brother from running and jumping?

Our continued search for a doctor seemed bleak at first. No one would see him due to his age. He was considered a “senior” for this disease and very difficult to treat. After some research, we found a doctor in Baltimore who would see him and after a consultation. We traveled 2,000 miles to Baltimore to have his hip fixed. He received an external fixator that had to be worn for four months. His femoral head was injected with stem cells and the fixator helped keep the hip in place to allow the growth to happen. The fixator was outside his body and he had six screws holding his hip in place: three in his femur, and three in his hip.

Once released to full activity, my son began playing football and basketball again. His hip held up well for the next five years. Then at age 14, he began limping and having pain again. He wasn’t able to try out for basketball and became very sad. He had a peri-acetabular osteotomy. It was a difficult surgery and recovery. Being back in a wheelchair was much harder in 9th grade than it was in 3rd grade for his body. I could tell he was feeling defeated, but looked forward to a full recovery. I thought his desire to play sports again was fueling his speedy recovery, which he let me believe.

It’s now over a year after the surgery. I’ve noticed he still has a visible limp, and he is extremely aware of it. He kept telling me all summer he was going to try out for football, but he didn’t end up doing so. A few months later, the same happened with basketball. I accepted his decision, figuring he’d talk to me when he was ready.

Now, I finally understand he’s not playing sports because he’s mentally broken down. This disease, the surgeries and the therapy has gotten the best of him. His self-esteem has been damaged, and he is afraid not only of failing at sports, but also of injury. I spent so much time making sure he would be physically able to do what he loved—pushing him as he recovered, and encouraging sports. I never stopped to consider his self-esteem, his fear, or his anxiety about just being good enough.

He still loves sports, and wants to study sports medicine and become a Scout. I am happy he still sees value in it. However, I realize the mental health aspect of managing a disease can easily be missed, and children often hide their true feelings. My advice to parents of children who have illness, is to try and consider their whole body and mind together, and realize that being ill as a young person can sometimes have traumatic effects.

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Getty Images photo by EvgeniiAnd

Originally published: December 27, 2017
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