When Rex Crouch first heard that his little girl had juvenile rheumatoid arthritis (JRA), he wasn’t sure what to make of it.
Two and a half year old Taylor tripped and fell in the family carport last year, and never seemed to be able to recover from the fall.
“We took her to so many doctors, but no one could figure out what was wrong with her,” said Crouch. “She just kept crying and crying - it was obvious she was in pain but no one knew why.”
Crouch said the little girl was put in a cast, up to her waist, but the treatment didn’t help.
“She stopped walking, and started crawling around when the cast came off,” Crouch said. “Then her wrist started to hurt.”
After extensive testing, results were conclusive that the child had juvenile rheumatoid arthritis.
JRA is considered to be one of the most common types of arthritis in children. It is a long-term (chronic) disease resulting in joint pain and swelling.
Arthritis can be short-term — lasting for just a few weeks or months, then going away forever — or it can be chronic and last for months or years. In some cases, it can last a lifetime.
Angie Long, who was diagnosed with rheumatoid arthritis at the age of 23, said she can relate to the pain this little girl - and other children like her - are going through.
“She’s too young to talk and explain what this feels like,” said Long. “But I can tell you - it’s a debilitating pain. Sometimes it hurts so bad you can’t even figure out where the pain is coming from - ankle or foot, hand or wrist, arm or shoulder.”
Long says over time, she has found a treatment combination that works for her - Relafen and Enbrel.
“I don’t seem to have any side effects from taking these medicines, but it really comes down to a choice of taking medicine or trying to live with terrible pain.”
Long said she met Taylor’s mother recently, and they discussed the girl’s situation.
“Talking to me made me tear up, because I know how much that child is hurting,” said Long. “But on the bright side, I know there are often cases where children outgrow this so hopefully it won’t be something she’ll have to deal with for her entire life.”
“It’s very hard on her,” said Crouch. “She’s a little girl, she just wants to play but she can’t. Every time she tries to play she has to stop because she’s in so much pain. It’s hard to watch - it breaks my heart because I can’t fix it.”
Crouch said treatment options have been somewhat limited for his daughter.
“We’ve tried injections in her ankles and wrist, and they’re supposed to last for six months to a year - but they don’t seem to be effective.”
There are other treatments that are commonly recommended, like: nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen; slow-acting anti-rheumatic drugs (SAARDs), such as Plaquenil; immune system medications, such as Imuran; biological agents, such as Enbrel; and glucocorticoid medications, such as Prednison.
Most of the treatment options available carry risk of major physical side effects, such as sterility, increased risk of cancer, low blood count and eye damage - among many other things.
“One doctor suggested that we try a chemotherapy treatment that’s used for cancer patients, but we just think that’s too dangerous,” said Crouch.
Methotrexate (Rbeumatrex) is given weekly either orally as a liquid or in pill form, or by injection. It is one of the most commonly prescribed SAARDs for children with JA. It can help the arthritis as well as the systemic illness in many children, and takes 4-8 weeks to work.
Regular laboratory monitoring while receiving this treatment is important. Blood tests are usually checked every month at first then every 6-8 weeks later on. This is also a cancer chemotherapy drug but the dosages used in children with JA are much lower. Therefore, the side effects are less frequent. Side effects may include nausea, mouth sores, moodiness, diarrhea, low white blood cell count, lung irritation, infections and liver irritation.
“My family and I want to do something to help raise awareness about this disease,” said Crouch. “Hopefully one day the treatment options available to these kids won’t be so potentially harmful to them.”
Crouch and his family are hosting a fundraiser for the JRA Foundation on Saturday, June 4, at the Cyclone Speedway, located at 2750 Ebenezer Road, Bennettsville, S.C.
Crouch is part of a mower racing team, Crouch Mower Sports, and the family knows what it takes to throw down at the track.
Race registration will take place from 8-10 a.m., the entry fee is $30. A driver’s meeting will be held at 10:15, and practice will last from 10:30-1:30. The first race starts at 2 p.m.
“We have sponsorship for some of the prizes - this is a money race,” said Crouch. “There will be a lot of cash up for grabs!”
There will be a bouncy house and games for kids, as well as barbecue plates for sale.
“It’s a fun way to support a good cause, and maybe win some money,” said Crouch. “We hope to see a lot of people come out, and we’re really grateful to Mr. Perkins for letting us use his track.”
For additional information, contact Rex Crouch at 910-995-0750, or Cyclone Speedway at 910-995-0774.
Staff writer Kelli Easterling can be reached at (910) 997-3111 ext. 18, or by email at email@example.com