July 15, 2015
July is Juvenile Arthritis Awareness month. Juvenile arthritis is an autoimmune disorder that affects more than 300,000 kids. It attacks your joints — leading to swelling, pain, stiffness, fevers and more. It varies in its symptoms and its severity and there is no known cure or cause for the disease. The type of arthritis is determined based on the number of joints affected and the presence of the rheumatoid factor in the blood.
Since we’ve recently joined this club, I wanted to share our experience and serve as arthritis champions.
Here is Our Story
We started 2015 completely healthy. On New Year’s Eve my daughter couldn’t stop doing hand stands and cartwheels. So much so that we had to ban the activity after 7:00 pm so she could wind down and go to bed. She was dancing in a hip hop dance class and begging for me to sign her up for gymnastics.
That all changed after she returned to school after winter break. She first came into our room in the middle of the night crying because her hand hurt. I thought that perhaps it had gone numb from sleeping on it. Then I noticed that she had started walking funny. She had stopped cartwheeling around the house and stopped playing outside. She would cry every morning and ask for me to help her get dressed.
After a week of nagging complaints, she burst into tears at dance class because it hurt so bad to touch her toes. When I poked my head in to tell the teacher she had bad growing pains, he told me that he had juvenile arthritis.
That’s when it clicked. Her pain was much more than just childhood growing pains.
I got her into the pediatrician. Blood work and x-rays all looked good, although her knees were hot and swollen. It was winter so I hadn’t had the chance to see the massive swelling. They were probably triple the size of a normal knee and filled with fluid, so we were referred to a rheumatologist.
A pediatric specialist is hard to come by and we couldn’t get in for several months. But she was still in pain and it was rapidly getting worse.
We had to put her bed on the floor so it would be easier for her to get in and out of it. I had to dress her like a baby while she cried because it hurt to move. She was constantly chilled and her jaw hurt to eat. Her hands hurt to write in class and the worst part was because she could no longer play with her friends, she would sit all alone at recess.
She couldn’t walk across a parking lot. We all of a sudden had a handicapped child and no diagnosis, no resources, no solution in sight.
I gave her every anti-inflammatory that I could think of. Aleve, Tylenol, Motrin, grapeseed extract, curcumin and vitamins for bone health. We tried heat packs, ice packs, baths, etc. Nothing worked.
My heart was breaking.
Something was wrong with my daughter and we couldn’t figure it out. To top it off, I could not get in to see a specialist for months. That wasn’t going to cut it. She needed help immediately and the system was not helping.
After several calls to the doctor, I was told that in order to get her treated sooner, we should go to an Emergency Room at a top hospital that had specialists on staff.
I had trouble doing this. ER? Isn’t that for gushing blood and broken bones? Finally, when the doctor told me it was what he would do if it were his child, I jumped. We went and we waited for nine hours in the ER. Even though we didn’t get answers that day, we did get an appointment with a top rheumatologist the next week.
After a very thorough examination, we got a diagnosis. Maya was diagnosed with Polyarticular Juvenile Arthritis. It means that she had arthritis in many joints and frankly it was too many to count. Her elbows, knees, fingers, ankles, hips, toes, jaw were all painful. It seemed severe. But she tested negative for the rheumatoid factor, which can be a more life long and debilitating disease.
It had only taken three weeks to go from a perfectly healthy child to a shell of what was once there. Even her personality had changed. The spark had left. Chronic pain can be very wearing, especially to a young child.
The rheumatologist wanted to treat her aggressively. Especially since it takes months for some of the medicines to take full effect. She didn’t want to play the wait-and-see game since arthritis can cause damage to the bones, so we left with a treatment plan in place. We started Prednisone immediately. And I must say the results were immediate. In less than 24 hours from the first dose, she was at my bedside declaring that she felt great and was ready for dance class.
Amazing! Just plain amazing how fast it helped relieve the pain. So our plan was to stay on Prednisone for one month while waiting for the Methotrexate and the Enbrel to take effect. Both are injection shots that I have to give every week.
It took a while to become fully effective, but slowly and surely she returned to the bubbly little girl we knew. Nothing held her back. She is back in dance and gymnastics and happily cartwheeling around the house.
It has now been six months and our last doctor appointment found no signs of arthritis. This was great news. They considered her to be in “remission with medication” which is the first step to full remission of the disease.
We will continue on the current treatment plan for another year before we start to wean her off the medicine and hope that it stays in remission. Until then, we are extremely grateful to the doctors at U.C. San Francisco. They have been incredible, and their decision to treat her aggressively worked wonderfully.
My purpose of this blog is simply to share our story. Ours is not the worst by any means, but it is a reminder that life can change in an instant. Silent diseases can be just as debilitating, so be kind. Act quick and fight to be an advocate for your child’s health.