Our discovery with Juvenile Rheumatoid Arthritis

Catherine’s Illness


In  September 2006, Catherine’s pediatrician Dr. Gupta diagnosed her with Fifth’s Disease, she had this amazing rash that broke out everywhere on her body however the year before the ER doctor in Junction City Kansas, diagnosed Catherine with the Fifth’s disease.  From 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.

I

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.

A 2007 U.S. Centers for Disease Control and Prevention study estimated that 294,000 U.S. children (or 1 in 250) have been diagnosed with arthritis or another rheumatologic condition. (American Academy of Orthopedic Surgeons).

I plan on creating a Non-Profit Group that supports kids and parents who have been diagnosed with Arthritis. My husband and I also plan to ride in the Carolina Blue Ridge Classic in 2011 with Team Catherine

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Comments on: "Catherine’s Illness" (12)

  1. My oldest daughter came down with Stills Disease, a form of systemic juvenile arthritis, when she was 17. For weeks she had unexplained high fevers, joint pains, extreme fatigue, and a rash that would come and go. Her doctor finally put her in the hospital and they tested her for lupus, lymphoma, lyme disease and a score of other diseases, and they were all negative (thank God!). One constant in her blood work was a high Sed Rate. He finally referred her to a local rheumatologist, who diagnosed the Stills Disease. He put her on high doses of prednisone and she started to show immediate improvement. Two days later we took her home from the hospital and she then started a regime of prednisone and methotrexate. Eventually she was off the prednisone but continued on the methotrexate for about a year. She has been symptom free for 9 years now, and I am so thankful. She was very brave throughout the hospitalization and treatments. I hope your daughter continues to progress and improve. She is lucky to have such supportive parents and health care providers.

  2. Jan Harrington said:

    My name is Jan Harrington and My Daughter’s name is Bailey and she is 14 and she also has JIA, We where told in May of this year that is was JIA, We think she has had it for the last 2 years and it has been a long road.. Bailey is on Mtx shots also and Clebrex, pred and has to have pain meds as well. This has been very hard for us as well, she was a competitive Soccer player and now she can’t play soccer, but we are trying very hard to get her back on the fields.. It is nice to read your story It helps a lot. Thanks for sharing.

    • Hi Jan! Thanks for writing, it is nice to hear from parents who are going through the same thing as us. How is your daugther doing on the mtx shots? Cat couldn’t take them during the day, so we had to give them to her at night. Then her headaches started about 3 weeks ago. My daugther used to cheer competitively but with all her flare ups it has been hard to get her to go back b/c of the thickening in her knee joint.
      Cat has been on predinosine before and it helped WONDERFUL but after she stopped taking it, the swelling came back but she has used steroids in the past to control her asthma flareups that the docs didn’t want to put her back on the prednisone.

      I understand your pain and your family’s pain and frustraction..

      Please check out http://www.ncsoak.org, that is a non profit website about Juvenile Arthritis in kids.

      Are you all from NC by any chance?

      • Jan Harrington said:

        Bailey just started the Mtx shots she just had her second one this past friday. We give them on friday because of it making her feel so nasty and I did not want her to feel like that in School. She has already missed 10 days due to all the flairs and then she got a bad infection. She has been having headaches everyday since she started on the shots and her stomach hurts and she feel sick to it! but I know it comes with the meds. We are from Oklahoma. The town we live in is called Sand Springs. Bailey also go’s to School with a girl that has the same type of Jia as she dose she is a cheerleader and dose tumbling! if you can believe that. She is on Orenca and is doing very well but she dose still have flairs, so there is hope for these girls to get back to what they love to do!! I know one day that will be possible.

      • I know we had to change to giving them to cat on Sat nights, it helped with the feelings of nasuea and stomach craps. With the headaches, tell your doctor or the nurse, our nurse recommended that we give her a double dose of folic acid on the day of the injection and the day after…so far she hasn’t had any headaches yet… I know it is possible. I was asking because I didn’t know if you were referred to a pediatric rheumatoid specialist. Well I pray that these girls will get better! Thanks keep in touch!

  3. Jan Harrington said:

    Thank you for letting me know about the folic acid i will ask her nurse on Friday when she comes… Yes Bailey was referred to a pediatric rheumatoid specialist. His name is Dr James Jarvis. He is very good. Our pediatrician was the one convened that she had JIA and sent us to Dr Jarvis, we drive 1 hour and 30 minutes to see him once a month…. Have they talked to you about putting Cat on any of the Biologics yet?

    • No she was referred to a pediatric rheumatoid specialist at UNC Chapel Hill, and what they did first was gave her a sterile knee injection of aristopan directly into her joint. She was consciously sedated for that procedure, and it took alot of the swelling and thickening away. Then 6 weeks later they out her on the methotrexate, Sat night will be her 12th injection, and so far this week she hasn’t had alot of side effects. I know they did increase her dose from 12.5mg to 17.5mg, however for a long time it was her knee that was swollen then last month her ankle started to swell, and when he saw her he thought her jaw sounded a little stiff, so he is going to get a MRI of her jaw done. No what are biologics?

      • Jan Harrington said:

        Biologics are motley given threw Iv’s they are called infusions, they are done in your doctors office or a hospital. Some of them are shots. The ones that are shots are Enbrel, Simponi, .. Humira, Remicade, Orencia, Rituxan. You need to ask your Dr and see what he tells you. They have talked about putting Bailey on Enbrel or Remicade if the Mtx shots don’t work. They told me it depends how many joints she has affected and how long they stay swollen. Bailey has both knees, both, ankles, both wrest, and both hands and fingers. He fingers look like little fat sausages. Her knees and ankles comes and go’s depending on how much she dose.

  4. Jan Harrington said:

    I forgot to tell you about a Book that is really helpful and it is called Raising a Child With Arthritis. Bailey’s Dr talks some in that book.

  5. We here at the Fayetteville Flight Organizations are extending our hand in spreading the word on youth arthritis as well as hosting fundraising events to find a cure for our youths who are going through this. Feel free to contact Mike Dixon at 910-670-6606. Thanks!

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