Entries in Juvenile Arthritis (4)


Toddlers Struggle with Juvenile Arthritis

Courtesy Kim Pruden(PHOENIX) -- Campbell Pruden was only 19 months old, just beginning to talk, when she developed a limp and begged to be carried. The only way she could express her pain was to tell her parents, "It's too tight."

In 2011, the once energetic toddler was diagnosed and hospitalized with systemic juvenile idiopathic arthritis. At one point, she was taking eight daily medications. She was so afraid of the frequent steroid injections that she had to be put under anesthesia to keep her still enough for the procedure.

"In the beginning when there were all those unknowns, we knew we had to get to the bottom of it," said her mother, Kim Pruden, a 35-year-old speech pathologist from Phoenix. "But at the same time, we had to keep that poker face with her to give her the confidence that, 'You are OK and you are going to be OK.'"

The couple has their "breakdown" moments after Campbell goes to bed at night.

One of the greatest misunderstandings about arthritis is that it affects only adults. More than 300,000 children in the United States are living with the disease, according to the Arthritis Foundation, which has launched a new public awareness campaign to debunk the myths of arthritis during the month of May.

In addition to swelling in the joints, children can suffer muscle and soft tissue tightening and bone erosion that affect growth patterns.

Symptoms may include a non-contagious fever and rash. Inflammation can affect the spleen or the membranes that cover the lungs and heart.

It's important to recognize the symptoms of arthritis early, as many forms of arthritis can cause irreversible joint damage, often within the first two years of the disease. There are more than 100 types of arthritis and knowing what type you have makes a difference in how it is treated.

Now three years old, Campbell gets intravenous injections of powerful immune-suppressant medicines known as biologics, but office visits can last anywhere from two to five hours long. She calls the tiresome procedures her "stupid tubes."

Pruden laughs that the ordeal is like "going to Disney World for kids to get poked with needles."

Pruden and her husband John take a positive approach with their daughter whose joints are always aching.

"We keep her moving, we keep her active and we take one day at a time," she said. "When she is not feeling well, we respect that, but it's important not to make that a crutch or an excuse."

Arthritis is an umbrella term used to describe the many autoimmune and inflammatory conditions.

One family hard-hit by the disease recently moved from rainy Seattle to Charleston, S.C., for the warm climate, which is easier on the aching joints of sufferers.

Sisters Amelia, 5, and Liberty, 3, have juvenile idiopathic arthritis, which affects their joints "from head to toe," according to their mother, Lisa Schultz, who was recently diagnosed with rheumatoid arthritis.

Their father has had gout since he was 20, which is also a form of arthritis.

Amelia was diagnosed in April 2010 when she was nearly 2. She suddenly stopped walking and reverted to crawling.

"She started limping in the morning and wanted to be carried," said Schultz, 37 and a stay-at-home mother. "She would cry when I changed her diaper, too. I would lift her up and she would say her toes hurt when I put on her socks. Her second toe was almost the size of her big toe and her knees were the size of oranges."

Amelia's younger sister was just 15 months old last November when she, too, developed juvenile arthritis. Like her sister, she had painful joints; both stopped growing. Just recently, Liberty has developed inflammation in her right eye related to her arthritis and takes drops six to eight times a day. Untreated the condition, uveitis, can cause blindness.

"One day in the tub I saw that one knee was way bigger than the other knee, but I thought there is no way possible I would have two kids with it," said Schultz. So far Liberty is "in better shape" than Amelia. The family has a son, 7, who shows no signs of arthritis.

Both girls had tried anti-inflammatory and steroid medications, often the first line of defense for treating arthritis.

In the last decade, there have been significant advances in the treatment of arthritis, especially for those who do not respond to conventional drugs. The most important has been the development of a group of drugs called biologic response modifiers or biologics.

Now, like Campbell Pruden, the girls take biologics, known as TNF (tumor necrosis factor) inhibitors that suppress the inflammatory response seen in arthritis. So far, neither of the Schultz girls has any joint deterioration. But their mother worries about potential side effects with these powerful biological medicines -- one of which is lymphoma.

"It's scary," she said. "But we don't have a choice. Years ago kids were in wheel chairs and crippled. Now, with the medicines, you wouldn't be able to tell they have arthritis."

As for Campbell Pruden, she is now in a "holding pattern," doing well as doctors have cut back on her medications. Her parents keep her off red meat and dairy, part of an anti-inflammation diet.

"She can have some sort of remission, but it will be in her body for the rest of her life," said Pruden. "You never know when there is going to be a flair up. Right now, we just hope it stays dormant.

Nowadays, Campbell joins her parents hiking and on other outdoor activities. "She's a trooper and wants to do everything we do," said her mother.

Just recently Campbell got a fever and her parents worried she was taking a downward turn. "Doctors ruled out a flair-up [of her arthritis] -- it was an early version of the flu," said Pruden. "If it's flu, I'll take it."

The Prudens' greatest reward comes from helping others with the disease.

"I make it my mission to raise awareness," she said. "These children live in pain every day and can't even wake up and go to school because of the pain in their body. We need to find a cure, to find a way for these kids to lead strong, happy lives."

Copyright 2013 ABC News Radio


Juvenile Arthritis Can Hinder Finding Work, Study Finds

Creatas Images/Thinkstock(NEW YORK) -- Researchers in Great Britain have confirmed what many young adults living with arthritis already know: having juvenile arthritis in childhood makes it more difficult to be successfully employed as an adult.

It's something Dr. Patience White, vice president of public health for the Arthritis Foundation also knows.  She says even a good education may not be enough to overcome the challenge of a disability that begins in childhood.

"The real issue is they haven't had enough pre-employment experience, whether it's babysitting, volunteering or working a paper route," she said.  "What happens to kids with chronic illnesses is they don't get to do that."

Almost 300,000 children in the U.S. have juvenile arthritis, according to the Arthritis Foundation.  Past research has found they experience higher rates of unemployment as adults than their healthy peers.

Thursday's study, published in the journal Arthritis and Rheumatism, found that the degree of disability matters.  The study followed 103 adult patients who had been diagnosed as children with juvenile arthritis.  People who suffered greater disability as children accomplished less as adults.  They were less likely to be employed and they found it harder to hold the jobs they got.  The majority of those who were unemployed said their disease was the reason they couldn't find work.

White says the study shows children growing up with juvenile arthritis will need special guidance from parents and professionals as they set their goals.

"You want young people to get as much education as they possibly can, and think about their functional status and what the job requirements are so they don't set themselves up for failure," White said.

Copyright 2012 ABC News Radio


Juvenile Idiopathic Arthritis May Raise Kids' Cancer Risk

Fuse/Thinkstock(BIRMINGHAM, Ala.) -- Children with juvenile idiopathic arthritis (JIA), the most common form of childhood arthritis, may be at higher risk of developing cancer than children who do not have the condition, according to a new study published in the journal Arthritis & Rheumatism.

Researchers identified 7,812 children with JIA and compared them with thousands of children not affected by JIA and found that the arthritic children developed about four times as many new growths considered likely to be cancerous as children who did not have arthritis.  They followed the children for about 18 months.

"Based on the data, it appears that being diagnosed with JIA increases the likelihood of developing malignancies," said Dr. Timothy Beukelman, the study's lead author and an associate professor of pediatrics at the University of Alabama at Birmingham.

But despite the statistically higher risk, Dr. Sampath Prahalad, associate professor of pediatrics and human genetics at the Emory University School of Medicine, said cancer in children with JIA is rare.

"The risk is very low, and it's more common for children with JIA to not get cancer," he said.  The study included only 7,812 children with JIA, and nationwide, there are about 300,000.  Prahalad was not involved with the research.

Beukelman said there are a number of possible explanations for the finding, but so far, no one knows why JIA may predispose children to cancer.  He stressed, however, that there was no association between cancer risk and any treatments for the condition, including the use of drugs known as tumor necrosis factor (TNF) inhibitors.

TNF inhibitors, including the brand-name drugs Enbrel and Humira, are considered by doctors to be revolutionizing treatments that can sometimes stop rheumatoid arthritis in its tracks.

But there have been a number of case reports linking the use of TNF inhibitors to an increased cancer risk in children, prompting the Food and Drug Administration (FDA) to add a black box warning to these drugs in 2009.  A black box warning is the strongest warning used by the FDA and indicates a drug has potentially life-threatening effects.

"The initial concern about TNF inhibitors may have been overstated, since some of the risk likely comes from the disease itself," Beukelman said.

Beukelman explained that when the FDA made its decision to include black box warnings on TNF inhibitors, the only data available compared children with JIA who took these drugs with healthy children.

Copyright 2012 ABC News Radio


Drug for Juvenile Arthritis Gets 'OK' from the FDA

Jupiterimages/Thinkstock(WASHINGTON) -- The Food and Drug Administration has granted wider use of a drug for juvenile arthritis. Actemra was approved to treat children aged two years or older with active systemic juvenile idiopathic arthritis (SJIA), a rare illness for children.

The drug, made by Roche Holding AG, was approved last year as a treatment for adult arthritis patients for who don't receive an adequate response from other medications.

According to the FDA, SJIA is a potentially life-threatening illness that causes inflammation throughout the entire body.

Copyright 2011 ABC News Radio

ABC News Radio