Stanford Medicine Newsletter Updates For the Local Community

 

When the road to college is complicated by chronic illness

A journey toward independence

   

In September, Hari Suresh of Fremont embarked on his freshman year at UC Davis after a long and painful journey. He had not only fought through years of illness and chronic pain but also struggled to get the education he needed for college. Fortunately, he and his family found help through an advocacy program at Lucile Packard Children's Hospital Stanford, which he credits, along with his persistence, for allowing him to realize his goal.

Suresh first came to Packard Children's during middle school in 2008 and was diagnosed with juvenile arthritis, causing painful joint inflammation. In his junior year of high school, when most of his friends were gearing up to apply to college, he was diagnosed with Crohn's colitis, chronic inflammation in the walls of the digestive tract and large intestine. Patients may experience unpredictable, painful flare-ups, as well as heavy cramping and frequent diarrhea. Those symptoms, coupled with pain from his arthritis, made it impossible for him to go to school.

As Suresh's gastroenterologist, William Berquist, MD, recalled, "His symptoms were significant, his body had difficulty maintaining good nutritional status and he was dealing with sleep issues."
Suresh missed two years of school, was unable to graduate with his class, and lost connection to friends and high school life. He wondered whether his life would ever be "normal" again.

A straight-A student

"School had always been a huge part of my life, and to have that removed for that period was very distressing," said Suresh, who was a straight-A student. "It was difficult to be cut off from my peers over that time. I felt isolated."

During that time, he found support in the Pediatric Pain Management Clinic at Packard Children's, where he spent a month in the intensive pain program. For seven to eight hours a day, he received physical and occupational therapies and learned pain management techniques that increased his endurance. He also met other young people in the program with chronic illnesses and similar experiences.

"For the first time in a long time, I felt a sense of camaraderie with my peers," he said, "like I was just 'one of the guys.'"

Children with chronic pain and illness may frequently miss school; have trouble with focus, performance and learning; and experience a sense of having been left behind, said Jeanne Kane, MA, program supervisor for Packard Children's HEAL program (Hospital Educational Advocacy Liaisons). The program supports families of medically fragile children so that youngsters can experience success in learning despite limitations imposed by their medical condition.

Suresh's schoolwork had suffered from his frequent absences during hospital stays, fatigue and stress, as well as from memory issues associated with his medications. Kane met with officials at his school to advocate for educational accommodations. Suresh was given more days to complete homework and exams, allowed to use word processing in class, and granted more time — two extra years — to finish high school.

"I felt excited to go to school again," he said. "It allowed me to expand my horizons again to being more than just my illness and trying to get my school work done."

Rashmi Bhandari, PhD, pain psychologist in the Pediatric Pain Management Clinic, also worked with Suresh's parents. "Parents are hardwired to protect their kids, especially when they are sick; they want to do everything for them," she said. "We re-teach parents to encourage their child to function as independently as possible in a supportive environment."

With Kane's help, Suresh applied to colleges that would provide support for his health issues. He was happy to be accepted to UC-Davis — a celebrated victory for everyone in his life. Though he will have to adapt to managing his medical care in college, "I am most looking forward to being a college student, not feeling different, not being a patien t— getting the chance to live my life," he said.

 

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