Tips for Exploring Tough Topics with Teens with Rheumatic Disease

Ms. Pagano

Eileen Pagano, MS, CPNP, a pediatric rheumatology nurse practitioner at Cohen’s Children Medical Center, shared the story of her patient, “Kate,” who was diagnosed with oligoarticular juvenile idiopathic arthritis at age 2 and uveitis in both eyes a year later. Kate’s therapy included joint injections, methotrexate and eye drops, and she developed persistent sleep problems. Between 8 and 14, she had regular infliximab infusions.

“As she grew up, developed and began menstruating, Kate had a surge of hormones that fueled all these behaviors that Dr. Gottlieb discussed, and this went on for about two to three years. It was a tricky time for her,” said Ms. Pagano. “She had a lot of difficulty sleeping, and she began displaying aggressive behavior at home toward her parents and her siblings.”

At 14, Kate was diagnosed with oppositional defiant disorder, and her rheumatology care team discontinued infliximab because of concerns about its potential cognitive side effects, said Ms. Pagano. At 15, Kate started intravenous abatacept treatment at home through a home health service, which controlled her disease but caused mouth sores. At 16, Kate’s cousin committed suicide, which disturbed the teenager, and she experienced an iritis flare. Kate’s methotrexate dose was increased, but by 16, she began missing doses and began binge drinking. She began vaping nicotine daily at 17, and continued abatacept infusions once she started college at 18. Kate had an abortion at 19, and later withdrew from school and quit taking all of her medications. Her arthritis flared. Now 22, Kate has stabilized her mental health with counseling, and after working two jobs to pay for her tuition, is now thriving at a new college.

“Kate was drinking at an early age and binge drinking often, although it was contraindicated with her methotrexate. Look at the reason for the child’s drinking. Kate chose alcohol because it was an effective anti-anxiety agent,” said Ms. Pagano. A regular exercise routine and counseling helped this patient deal with stress and improve her sleep over time.

“Establishing a rapport with your kids very early on so that you can take them through their adolescence is the most important advice. You’re not their parent, you’re not their friend, but make it clear that they can talk to you and that they can trust you,” she said. 

Susan Bernstein is a freelance journalist based in Atlanta.

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3. Abma JC, Martinez GM. Sexual activity and contraceptive use among teenagers in the United States: 2011–2015. Natl Health Stat Report. 2017 Jun 22;(104):1–23.