-Cameron at 25-
When Cameron’s Arthritis journey started 15 years ago I had no idea we were in the eye of a storm about to be swept away like Dorothy, Toto, and the house. My 8 year old who dreamed of being an astronaut was about to become the Tin Man looking for a can of oil. Never could I have imagined the years of doctors, hospitals, tests, sleepless nights, and desperation that were ahead.
What I knew then was my little boy was doubled over and crying from pain, and the pediatrician said it was intestinal blockage. The doctor didn’t have time to run tests to find the underlying cause, because we had to move in response to 9-11. He urged me to get Cameron to a doctor as soon as we moved.
Searching for Answers
Cameron was in fourth grade when we moved from Minnesota to Texas and began searching for answers. I found a knowledgeable primary care who did the job of several specialists which was a real blessing. Cameron’s symptoms became progressively worse, and it wasn’t long before doctors were looking for cancer. He had to be withdrawn from baseball, and I had my first advocacy experience.
When Cameron’s feet became stiff and sore we bought new shoes, but it didn’t help. He began seeing a pediatric gastroenterologist weekly, and migraines started. By fifth grade his hips both started hurting, and walking and sleeping were difficult. He cried from the pain. Not long after his hands
For months they ran tests but had no answers. We had to exert control where we could, because the more we went to doctors who couldn’t give us answers, the more powerless we felt. We prepared for bad news by making a plan to convert our office into a bedroom and separate the boys. Next we booked a big Disney trip, wanting to go sooner rather than later. Cameron had to get a wheelchair, and he spent the first day in bed. This became a pattern for family vacations instead of the exception.
When cancer and several other illnesses were ruled out and his hands had become stiff and sore, he was sent to rheumatology. It seemed like arthritis, but that couldn’t be proved with labs. The doctor took Cameron out of PE in fifth grade and ordered hospital/homebound school in sixth which he continued through high school graduation. We drove 6 hours to New Orleans to see a pediatric rheumatologist, Dr. Gedalia, who diagnosed fibromyalgia with the good news that he would likely grow out of it in his teen years. Fibromyalgia was regarded as a fake illness then, and Cameron was a kid treated like he was faking pain, and some people blamed me.
A 3 Year Wait For a 10 Minute Diagnosis
The Navy sent us to Jacksonville, FL., and after few months seeing adult rheumatology, Cameron finally was referred to pediatric rheumatologist, Dr Elder, at UF Shands, Gainesville. She looked at his fingernails and diagnosed psoriatic arthritis within 10 minutes. In that moment we were all so glad to have a definitive answer that we forgot that it wasn’t good news! I still naively thought that if we had the diagnosis and the right doctor, it was going to be better. She had treatments that were going to fix his pain.
it I was also confident Asperger’s was in the mix, and later it was confirmed with testing. We were uncovering pieces of what would be his pain puzzle, stumping doctors for over a decade.
One Foot In the Arthritis World, One In the Cancer World
Cameron’s negotiations with disabling pain began. Over the course of a decade there were countless ER visits, about 30 hospitalizations, monthly infusion clinic, port surgeries, steroids, biologics, methotrexate, hair loss, hip injections, nerve burns, wheelchairs, pain pump, acupuncture, psychotherapy, cyclical vomiting, endless sleepless nights, and fighting back tears. This is a glimpse at the world of an arthritis kid: sitting alongside the cancer kids at infusions, throwing up, and losing hair. What sets him apart from cancer kids, is infusions and chemo (methotrexate), have no end. There’s no possibility of a cure. After a few years, being a cancer kid looks pretty good in comparison. That sounds terrible to any rational person, but it’s hard to be rational with intractable pain or while watching your child become disabled from pain. Any closure seems better than not having quality of life.
What Lies Ahead
Cameron is in his mid 20’s now, and his pain management options have been exhausted. At the same time, legislation continues to interfere with access to the medications he needs, relegating him to a life of disability. If only he could live with acupuncture needles in him like a voodoo doll, the problem would be solved. Back in the real world, we’re seeking a radical answer that most doctors don’t know exists. We’re fighting to return to UCLA to proceed with DBS for intractable pain. That’s pain that doesn’t respond sufficiently to a long list of treatments, pain that raises blood pressure and heat rate to the point it can be life-threatening. (He’s at risk.) It’s pain that drives some people to suicide. This is extreme pain that makes Cameron throw up and pass out. It calls for extreme measures like seeking experimental brain surgery.
You may think this sounds crazy, and some doctors would agree, but Cameron wants the chance to have a life with manageable pain. What would be truly crazy would be to ignore this chance to reverse disability, banishing Cameron to a life of excruciating pain.