How SOAK was created

In 2006 to 2009 Catherine has had about 20 sore throats, and about 8 strep throat infections. Catherine has always been an energetic child, very active and constantly in motion. In 2008 she was on a Competition Mini Cheerleading Squad, competing at different competitions across the US.  In May 2009 Catherine’s dad deployed to Iraq, and Catherine started getting high fevers and a couple of sore throats.  Her fevers would be high around 103 degrees one night and gone the next.  She had difficulty getting out of bed in the morning, could not navigate a single flight of stairs, and would often wake up complaining from the pain in her legs.  She constantly complained of her knee hurting, I thought it was growing pains and dismissed it. One day after cheerleading camp her knee became swollen and we thought she injured it there but she hadn’t performed any stunts.

 In July 2009, Catherine was seen by her pediatrician for the swelling in her knee. Her doctor sent her to get x-rays, after two weeks the swelling was increasing, the pediatrician referred Catherine to a Orthopedic Surgeon in Fayetteville. Dr. Green looked at her, took knee measurements and decided to remove knee fluid and gather a sample to test. It was difficult to witness your 8 year old being jabbed in the knee with a needle that was as long as a ruler. After the procedure he sent us to the laps to gather blood work. Catherine’s knee locked up and I had to carry her around to the laboratory. The next morning her knee looked wonderful and it had relieved pressure on her joint. A few weeks later we returned to get the results and he ruled out lymphoma, leukemia, lyme disease, and lupus, an finally diagnosed Catherine with Systemic Onset Juvenile Rheumatoid Arthritis (“JRA”). He began treating her with physical therapy twice a week, placed her in a knee immobilizer and naproxen to treat her arthritis. Dr Green said he would like a second opinion and referred her to a Pediatric Rheumatologist in Chapel Hill NC.

He also referred me to a ophthalmologist to make sure the arthritis was not in her eyes. We have to go every 6 months to make sure she doesn’t go blind. After her 6 weeks of physical therapy was completed, he put her in a full leg cast for two weeks. The objective was to try to reduce the swelling in her knee. The first cast was unsuccessful, immediately after he cut it off, it became swollen again. So two weeks later he put her in another leg cast, and had a hound dog splint custom made for her. We finally got a appointment with the pediatric specialist on Dec, 31, 2009. The orthopedic surgeon cut the cast off on Dec 30, and immediately placed her in the hound dog leg splint before our trip to the UNC Pediatric Hospital.

In late 2009, Catherine began seeing an pediatric rheumatologist, who prescribed a higher dose of naproxen to treat her arthritis.  He also ran a series of tests, from an MRI to a ultra sound of her heart.  After examining her in his office, Dr. Stein diagnosed her with polyarticular juvenile rheumatoid arthritis, which typically affects five or more joints.  Dr. Stein did an examination of Catherine from head to toe. It took 6 hours (from examination,  laboratory and tests) he confirmed it. At the next visit a month later, Dr. Stein pulled me into his office and put a box of tissues in front of me and said, ‘Mrs. Cavalier, there’s no easy way for me to tell you this. We need to start medication immediately and aggressive therapy, I was overwhelmed by the news. I had no idea that rheumatoid arthritis could affect children. I don’t even remember driving home in my car and I was shell-shocked and why this happened and why couldn’t her father be here to be with me.  I didn’t know arthritis was so bad, my grandmother has it and she seems ok. The first drug treatments of naproxen that was tried on Catherine didn’t seem to help and I was concerned about the risks posed by the drugs.
In February 2010 Dr. Stein confirmed that Catherine had juvenile rheumatoid arthritis after looking at her MRI. I was relieved but sadden because juvenile arthritis is so rare. I believe Catherine’s case had gone undetected by her pediatrician for a few years and was misdiagnosed numerous times due to her sudden fevers. Now, Dr. Stein finally has a diagnosis Catherine is being seen by her pediatric specialist and is now on weekly methotrexate treatments. Catherine is by no means cured or pain-free, Catherine’s life has improved dramatically after the knee injection procedure. A year ago, it took her more than an hour to get out of bed each morning. She could not walk up or down a single flight of stairs, and she would often need to be carried if we walked for more than 10 minutes.  This has been going on while Catherine’s dad was in Iraq. My daughter has endured pain and inconvenience that is unfathomable to me, yet she hardly ever complains.
When I take Catherine to her appointments at UNC Pediatric Hospital, we are surrounded by children who are badly burned or have other rheumatoid illnesses and none of them seem to feel sorry for themselves. After 5 months on naproxen and getting her asthma under control, she had a knee injection procedure with Aristospan in June 2010.
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n July 2010 the pediatric rheumatologist said that her knee improved but there was still thickening in her knee joint, he decided to put her on a weekly injection of Methotrexate. After my husband returned from Iraq we became involved with the North Carolina chapter of the Arthritis Foundation, a tremendous resource for families affected by arthritis and other rheumatic diseases.
So as of right now Catherine is on injections of Methotrexate, a type of chemotherapy.  So far Catherine gets nauseated and usually has an upset stomach immediately following her injections. Dr. Stein is hoping for a “clinical remission”, meaning that the disease appear dormant with regular medication.  Our hope is that Catherine can achieve a full remission once the medications have been tapered off. Throughout this past year Catherine has remained resilient and her spirit has never been broken.

Juvenile rheumatoid arthritis remains a very rare condition, so much so that it’s defined by the National Institutes for Health as an “orphan disease” because of the small number of cases in the country. In Dec Catherine had two more injections in her right knee and right ankle, then in Jan she had injections in both her jaws. Also after 6 months of being on Methotrexate, they decided to add a medicine, we are now on Enbrel injections she takes three shots a week. Cat has her ups and downs.