An uncertain rideThe only choice Scott and Karla Edenloff have is to get on the roller coaster and enjoy the ride – because some days are going to be up, and some will go downhill fast.
By: Jo Colvin, Alexandria Echo Press
The only choice Scott and Karla Edenloff have is to get on the roller coaster and enjoy the ride – because some days are going to be up, and some will go downhill fast.
That’s what happens when you have a 3-year-old with juvenile rheumatoid arthritis (JRA).
Some days, little Cooper is a boisterous, energetic dynamo, his mischievous antics getting him into all sorts of places he shouldn’t be. But other days, he’s tired and worn out, plagued by sore legs, knees and ankles.
“It’s periods of remissions and exacerbations,” Scott explained of his son’s disease. “He can be running around playing and the next day he has to be carried.”
The Edenloffs’ ride with JRA started when Cooper was a year old. The Osakis residents noticed that their son had a limp. But they figured it had to do with learning how to walk and didn’t think much of it.
At 16 months old, the limp had not improved, so after a couple more months of observing, they took him to the doctor.
“He didn’t think much of it, but I just knew that something definitely was not right,” Karla said.
Her mother’s intuition insisted that she take him to an orthopedic doctor, who in turn sent the family to Gillette Children’s Hospital in St. Paul.
Within 45 minutes doctors there discovered that their 18-month-old had a broken bone in his foot, and even worse, that he had JRA (see related sidebar for information on the disease).
“We were shocked. It was very devastating,” said Karla, who, coincidentally, had a 35-year-old friend with the disease who was confined to a wheelchair. That’s all she could think of when pondering her son’s future.
“I had never heard of juvenile arthritis,” Scott concurred. “I always thought it was adults. I went on the Internet and started researching and it was pretty devastating when I started reading all the possibilities.”
After the news sunk in, the Edenloffs learned all they could about symptoms, treatments, medications and preventive measures.
The couple was grateful that they got a diagnosis at such a young age so they could take immediate action to help prevent the worsening of Cooper’s disease. They were also lucky to end up with a world-renowned physician who takes an aggressive approach in his treatment.
Cooper’s symptoms, so far, are confined to his legs, knees, feet and ankles, with an occasional complaint about a sore neck.
“You will see him walking on tiptoes or when he stands, he favors one leg,” Scott said. “And his endurance is not near what a normal kid’s is.”
Cooper takes a strong oral anti-inflammatory drug twice a day. Once a week he gets an injection of a type of chemotherapy drug, which Scott, a nurse at Douglas County Hospital, administers himself.
The precocious tot also goes to pool therapy, where the therapist stretches his ankles, knees and feet; he soaks in a hot tub twice a day; and every night, his parents rub him for at least an hour until he falls asleep. They also try to keep Cooper active and schedule frequent eye exams (JRA causes inflammation that can spread to the eye).
All this is in hopes that Cooper can be spared the more debilitating aspects of the disease.
“There is such a wide spectrum,” Karla said. “Some kids are fully incapacitated to some who are walking with canes.”
“They don’t give you any real prognosis,” Scott added. “It’s such an individual thing, except we know he will experience these flare-ups and exacerbations.”
In addition to dealing with insurance companies and worrying about the effects of medications, the Edenloffs struggle the most with wondering what the future holds for their son.
“We worry that he won’t be able to get to do all the cool kid things, that he’s not going to get to play basketball and football,” Scott lamented.
“I hope it never takes away his independence,” Karla agreed.
Their goal is to help Cooper avoid the worst end of the JRA spectrum, which can lead to blindness or life in a wheelchair, and hope he can go into remission with only a couple flare-ups a year. Until then, they have made up their minds that all they can do is take things not only day by day, but hour by hour.
“Not everybody likes a roller coaster,” Karla concluded. “But we need to get on and enjoy the ride.”
Juvenile rheumatoid arthritis (JRA) is persistent arthritis in one or more joints that begins before age 16 and lasts at least six weeks. It is a disease that damages and eventually destroys the joints of the body. That damage is caused by inflammation.
The symptoms vary greatly in each child – from mild to severe. The symptoms constantly fluctuate, becoming worse (flare) and then getting better or sometimes going away completely (remission).
It causes persistent joint pain, swelling and stiffness. Some children may experience symptoms for only a few months, while others have symptoms for the rest of their lives.
Symptoms include joint pain; joint warmth; limited motion; joint tenderness; stiffness, especially after sleeping or inactivity; swollen joints; limping; joint deformity; loss of joint function; eye irritation, pain and redness; recurrent fevers; rash; muscle aches; lymph node swelling; weight loss; and growth problems.
Doctors believe that JRA is an autoimmune disorder, meaning that the body’s immune system attacks its own cells and tissues. Genetics and environment may also play a role in the disease.
There are three main types of JRA.
• Pauciarticular disease affects fewer than five joints, with the large joints such as the shoulder, elbow, hip and knee the most likely to be affected. It is the most likely to feature eye inflammation, which can lead to blindness in rare cases.
• Polyarticular disease affects five or more joints, with the small joints such as those in the hands and feet most likely to be affected. Signs and symptoms are usually confined to the joints.
• Systemic disease affects many systems of the body. It can feature swollen lymph nodes, rashes and fever and can cause inflammation of internal organs.