Parents' Perspective (Part 1)
Recently I had the opportunity to talk with my parents about their experience having a child with rheumatoid arthritis (RA). I was diagnosed at a very young age (about 2 years old) with an aggressive form of the disease. Now 36 years later, they reflected on what it was like as a parent to navigate the challenges of RA.
What was I like as a baby/toddler?
You were very happy. A happy, active baby. You liked to climb up and sit in the bathroom sink. You were just normal, active.
How did you know I was sick?
Because you started limping on your left leg. Your knees looked swollen.
What did you do to find out what was wrong?
We took you to the doctor and he said he didn’t know what was wrong: “I don’t see anything wrong. Go away and come back.” And we did and he said the same thing. The final straw with the old pediatrician was that your toe was swollen and you were still sick. He looked at it and said: “Yes, her toe is swollen. I have no idea why. Give me $15.” We refused to pay and told him we were not happy with his care. We never went back to that doctor. Then we took you to an orthopedist because you were still limping after a year.
We also took you to a neurologist. He said that you were limping to get attention because your grandmother had broken her hip.
And then finally another pediatrician. He said: “This child is sick. Let’s put her in the hospital and run some tests on her. I think she has arthritis.”
You went in the hospital overnight and they ran tests. They had one of those toys you sit on and push with your legs. You’re in with all these sick kids and you’re going up and down the hall on that toy. The doctor says: “If I didn’t know better, I wouldn’t think she was sick.” You just kept playing.
That’s when you met your doctors [rheumatologist and orthopedist]. They put you first on chewable baby aspirins, a lot every day. At first it was OK, you didn’t mind. But then when you realized you had to do that every day, you rebelled and would gag yourself and spit them out. That was fun.
What did you think when I was diagnosed?
It was not a relief. I guess it was in that we knew what was wrong. But the fact you had arthritis was pretty scary. Before you were diagnosed, when you were a baby, I [mother] saw this ad on TV with a little girl in a rocking chair and describing JRA. All I could think about was that ad and how you had a hard road ahead of you.
What was the treatment like then?
You were probably on the baby aspirin 4-6 months and that didn’t help. Then you were on liquid salicylic acid and we would squirt it in your month. Then naproxen, Relafen, gold salt shots, plaquenil. You’d have to be on something for six months before the doctor would decide if it was helping or not.
They made splits for your arms and a legs. Every night we had to put them on and wrap your arms and legs with ace bandages. You especially hated it in the summer, when it was hot.
And we used to make you walk around the house and keep moving, doing range of motion.
How did you handle school with my health?
When you were in preschool, you were in a special program for children who had challenges and you got PT [physical therapy] and OT [occupational therapy]. When it came time for Kindergarten, the school evaluated you and said you didn’t need it. In retrospect, you should have had it. It was new to us and we didn’t know better. But they put you in a regular class and the only thing was when it came to gym, you couldn’t participate fully.
When you were 10 and had your first huge flare-up, we bought your first chair. We went back to the school and they agreed to PT and OT, which you then had until you graduated.
When was your last flare?