Arthritis Awareness

Kids with arthritis sometimes need special consideration during the school day, whether it's being allowed to keep a water bottle on their desk all afternoon, or getting an extra few minutes to make the trek from one classroom to another.

If you have encountered resistance when it comes to getting your child's school to make appropriate accommodations for her, you should know the law is on your side.  Section 504 of the Rehabilitation Act of 1973 specifies that no one with a disability can be prevented from participating in federally funded programs -- and that includes elementary, secondary and post-secondary education.  Under the law, chronic conditions such as juvenile arthritis (JA) fall into the disability category.

The idea is to ensure all kids an equal opportunity to succeed at school.  The mechanism for making that happen is called a 504 plan.  It's a living document that can literally accompany your child from kindergarten to college, adapting to meet her needs as they change each year -- or more frequently.

Sample Accommodations

Consider including the following accommodations in your child's 504 plan.

• Allow student to dictate homework to parents to write or type assignment for student.  (Parents should identify on top of page when assignment is dictated.)
• Allow student to stay inside during lunch/recess if needed.
• Parent will send note to teacher when student was unable to finish homework due to not feeling well.  In these cases student will receive extra time to complete homework.
• Student will be able to modify activity level in gym class as needed.
• Student will be allowed to excuse herself to the restroom or nurses station whenever needed.  Student will be given a nurse's pass that she can keep with her at all times.
• Provide student with footstool if feet are unable to reach the floor.
• Provide student with additional set of textbooks to keep at home.

Cooperation is Key

Even with the most comprehensive 504 plan possible in place, there's one highly uncontrollable factor in play when it comes to making it work -- your kid.  For example, Caitlin Ryan's plan allows her to exempt herself from gym class on bad days.  "If the class is told to run, and her knees and ankles are really sore -- she can sit down while they run, or walk if she wishes," says her mom, Colleen.  Only problem is, Caitlin was likely to run anyway, so nobody would know about her arthritis, Ryan says.  Now Ryan lets teachers know when Caitlin isn't feeling well and asks them to come up with creative alternatives.  Instead of getting physical, she can count other students' laps or do clerical work in the office.

To read a story about the Ryan family and how they worked with their school system, visit the Arthritis Foundation.

Joint Venture: A Publication of the Arthritis Foundation, Fall 2008

Juvenile arthritis (JRA) is one of the most common chronic illnesses among children.  More children suffer from juvenile arthritis than cystic fibrosis, muscular dystrophy and multiple sclerosis combined.  Left untreated, JA can result in severe disability.

Nearly 300,000 children have a form of JA, but there are fewer than 200 pediatric rheumatologists to care for them.  A staggering 13 states to not have ONE practicing pediatric rheumatologist.  On average, children must travel 57 miles to reach the nearest pediatric rheumatologist.

This summer, the Senate Appropriations committee included important language in a key Fiscal Year 2009 funding bill addressing arthritis -

"Arthritis - the Committee supports the establishment of a national data collection system to ensure that the safety and effectiveness of new arthritis treatment is understood and that they are applied in the most beneficial manner, especially in the case of childhood arthritis.  The Committee also notes the strong need for a national network of cooperating clinical centers dedicated to the care and study of children with arthritis." 

This language shows that Congress considers JA a priority deserving of more attention.

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Arthritis Awareness Wear and the Arthritis Foundation support the Arthritis Prevention, Control and Cure Act (S.626, H.R. 1283) that creates incentives for medical students pursuing the pediatric rheumatology specialty; provides for an increase in the number and size of institutional training grants to institutions supporting pediatric rheumatology; and promises to expansion of public/private partnerships to encourage education and training.

The FDA announced on June 4, 2008 that it is investigating the possible link between the use of biologic drugs that block tumor necrosis factor (TNF) and the development of lymphoma and other cancers in children and young adults.

Over the last 10 years, about 30 cases of cancer have been reported to the FDA in kids taking anti-TNF biologics for juvenile rheumatoid arthritis, Crohn’s disease and other immune-related diseases. Approximately half of the cases were lymphomas, including both Hodgkin’s and non-Hodgkin’s lymphomas. Lymphoma is a cancer of immune system cells and, according to the FDA, is not a recognized complication of juvenile rheumatoid arthritis or Crohn’s disease. Other cancers reported included leukemia, melanoma and solid organ cancers. 

There are currently four anti-TNF agents available in the United States: Remicade (infliximab), Enbrel (etanercept), Humira (adalimumab) and Cimzia (certolizumab pegol). They suppress the immune system by blocking the action of TNF, a chemical that can lead to inflammation and immune-related diseases. Both Enbrel and Humira are approved for use in children to treat juvenile rheumatoid arthritis.

The FDA has been aware of the potential link between TNF blockers and cancer, a possibility that is mentioned on the labels for each of these drugs, but the agency currently believes the benefits of anti-TNF biologics outweigh their risks. The FDA has asked the manufacturers of the anti-TNF agents to provide information about all cases of cancer occurring in children receiving their products.  After reviewing this data, the FDA plans to communicate further conclusions and recommendations in approximately six months. 

Source: FDA

Chronic illness can have consequences that reach far beyond physical damage. Arthritis Foundation-funded researcher Kelly K. Anthony, PhD, and her colleagues at Duke University Medical Center in Durham, N.C., are investigating the social and emotional influences of juvenile arthritis (JA) on young people’s lives.

The Duke University team, which includes Laura E. Schanberg, MD, and Maggie Hood, BA, has conducted several related studies and has presented their results in abstract form at the American College of Rheumatology’s annual meeting and at the Arthritis Foundation’s research conference.

Parental Stress Predicts Depression in Children

In this study, 51 children with polyarticular JA and one of their parents completed various psychological questionnaires, and information on the child’s disease was gathered from their physicians. Of the children, 10 (20 precent) scored in a range that suggested a clinically meaningful depression. After analyzing the relationships between the variables, Dr. Anthony was able to determine that disease severity was not related to children’s depression. Rather, parental stress most significantly predicted symptoms of depression in the child. Dr. Anthony concludes, “It may be important for parents to learn techniques for managing their own stress related to both the management of their children’s disease and other daily hassles, as parents’ experience of stress appears to negatively impact children’s adjustment.”

Cognitive Functioning in JA

Little is known about whether and how JA may affect mental ability. To find out, 31 children with JA completed abbreviated IQ tests among other questionnaires that pertained to another aspect of the study. The children’s IQs fell within the average range. In addition, disease severity and duration were not related to children’s mental abilities. Therefore, Dr. Anthony and her colleagues conclude that children with JA are likely not at risk for cognitive impairments due to disease processes.

Parental Responses to Pain

Pain is a significant symptom for children with JA, but little is known about pain in toddlers and preschoolers with JA. In this study, one parent of 14 young children with JA participated in an unstructured interview with a researcher and completed questionnaires regarding pain episodes and pain measurements. Children’s verbal signals (whining, complaining, crying) and physical cues (limping, seeking comfort) were the most commonly used indicators for parents to recognize their child’s pain. Parents responded to the children’s pain with physical interventions (massage, heating pads), over-the-counter pain medications, distraction, encouraging rest and giving hugs. The researchers hope this information can be used to design pain interventions and parent programs as well as facilitate communication between parents and physicians about children’s pain.

Social and Nonverbal Functioning in JA

In this study, 21 school-age children with JA and one of their parents completed questionnaires that measure social skills and the children’s ability to understand facial expressions and exhibit appropriate body language in social interactions. On average, the children displayed age-appropriate social competence, social behaviors and nonverbal social skills. Differences in social skills among children in the study were related to aspects of the disease and facial decoding skills. Specifically, children who had their arthritis longer tended to have more problematic social behaviors (e.g., loneliness, more easily angered). Also, children who made fewer errors in reading facial expressions rated themselves as more socially competent, and children who were good at nonverbal interpersonal skills (eye contact, body language) were rated by parents and themselves as being more socially competent.

What Does This Mean for Families?

In general, these studies suggest that most children with JA don’t behave or feel all that differently than their peers without chronic illness. However, there are some children with JA and their families who do experience social and emotional difficulties. The research by Dr. Anthony and her colleagues highlights some important areas in which health care professionals could intervene to help these children and families. For example, parents could learn ways to handle their stress more effectively. Also, children could learn to read and react appropriately to the nonverbal cues of their peers as well as learn skills for coping with such stressful aspects of their disease as isolation, physical disability or deformity.

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