When the road to college is complicated by chronic illness – a journey toward independence

September brings the start of a new school year and Hari Suresh, 20, of Fremont will embark on his freshman year at UC Davis. For Hari, the journey to college was perhaps a longer, more complicated path than most high school teens. He not only fought through years of illness and chronic pain but also to get the education he needed so he could go onto college. Luckily, he and his family found help through an advocacy program and their integrated complex care team at Lucile Packard Children's Hospital Stanford, which he gives credit along with his dutiful persistence, for making it possible to realize his goal.

Hari first presented at Packard Children's during middle school in 2008 and was diagnosed with juvenile arthritis, causing painful joint inflammation. In 2013-2014, his junior year of high school, when most were gearing up to send out college applications, he was diagnosed with Crohn's colitis; a chronic condition of inflammation in the walls of the digestive tract and large intestine. Painful flare ups are often unpredictable and symptoms include heavy cramping and frequent diarrhea. Managing the conditions involve nutritional therapy, medication and in some cases surgery. That, coupled with chronic pain from his arthritis, made it impossible to go to school.

Hari's gastroenterologist, William Berquist, MD, recalls, "I began seeing Hari over four years ago, at a point which his symptoms were significant, his body had difficulty maintaining good nutritional status and he was also dealing with sleep issues."

That was the beginning of a two year interruption in his schooling, missing graduation with his class, and missing the connection to friends and high school life. Hari wondered whether his life would ever be "normal" again.

Working through the pain to get back to school

Hari had always excelled in school, a straight "A" student who enjoyed being a student.

"School had always been a huge part of my life, and to have that removed for that period was very distressing," he describes. "It was difficult to be cut off from my peers over that time, I felt isolated."

During that time, Hari found support in his care team in the Pediatric Pain Management Clinic at Packard Children's. Here, Hari went through the intensive pain program, a month-long program of 7-8 hours a day for physical and occupational therapies and pain psychology that would help increase his endurance and get him back into school. At the Center, he also encountered other young people who have chronic illnesses and similar experiences.

"For the first time in a long time, I felt a sense of camaraderie with my peers. Like I was just 'one of the guys' so to speak."

Rashmi Bhandari, PhD, pain psychologist in the Pediatric Pain Management Clinic, who has provided mental health support to Hari and his family since the beginning of his complex medical journey, emphasizes how chronic pain and illness can impact a young person's ability to develop independence, confidence, social competence, and heighten psychological vulnerability.

"The natural reaction to pain is learning how to avoid it, and pain avoidant behaviors lead to significant functional impairment" said Bhandari, clinical associate professor of Anesthesiology, Psychology and Pain Medicine at Stanford University School of Medicine. "Pain psychology is a key intervention in pain management that supports patients to gradually live their lives in a way that is consistent with their values, despite some level of discomfort, and to utilize self-regulation skills to optimize their quality of life. That includes gradual exposure to going back to school, leaving the comfort of home, and engaging in social and physical activities."

Chronic pain and illness interferes with a child's trajectory in school, often leading to frequent absences, difficulties with focus, performance, and learning, and frequently feeling behind and stressed out. Bhandari describes it as a vicious cycle that leads to social isolation and increased stress and what's more, "stress and isolation exacerbate the experience of pain."

"An interruption in a young person's 'normal' academic and social life due to chronic medical illness presents a major challenge for the entire family," said Jeanne Kane, MA, program supervisor for Packard Children's HEAL program. HEAL stands for "Hospital Educational Advocacy Liaisons" and their mission is to help enable families with medically fragile children to experience success in learning despite limitations imposed by their medical condition.

"We know that life returning to 'normal' activities, like education is critical for a child's optimal adjustment," said Kane. "And parents and children often face new obstacles when the child returns to school."

One of those obstacles was earning educational accommodations from his school. His frequent absences for hospital stays, fatigue and stress, as well as memory issues associated with his medications, took a toll on his schoolwork. That is when Kane learned about the Suresh family, referred to her by Hari's care team, and stepped in to offer support.

A big part of HEAL's function is educating students, parents, and schools about the unique cognitive, social and emotional needs of medically fragile children, in order to obtain appropriate school services. In Hari's case, his mother, Pannaga Parthasarathy, had exhausted her efforts as his advocate. "At a certain point I didn't know what else to ask for to help him in school," she said.

"The assumption is that schools are adept at working with children with disabilities, but that doesn't necessarily translate to the unique needs of kids with chronic illness which affects vitality, alertness, and ability to perform and succeed in the school environment."

It is something that school systems are learning how to navigate thanks to the guidance of experts like Kane. Collectively, they can identify solutions that enable students to successfully re-enter the school environment. Kane worked with the family and the school for three years, with much time dedicated to rigorously advocating the case for Hari to receive educational accommodations based on his medical conditions. These were granted under what's known as Section 504 – part of the Rehabilitation Act of 1973 that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled. With the 504 plan he was granted accommodations including more time for homework and exams, as well as the ability to word process in class to minimize his need to work with paper and pen, which is a challenge. Most importantly it allows a student more than four years to complete and graduate high school. Hari graduated in 6 years.

"You can't just focus on a test score," said Kane. In Hari's case, cognitive tests placed him in an average and above range, scores that indicate to the school whether or not a student needs an Individualized Education Program (IEP). Kane became a constant presence at meetings with the school and the district to educate officials that his condition warranted accommodations under Section 504 to modify his workload and allow for individualized services.

"I was able to function at a much higher level," said Hari of his return to the system with the accommodations and with his intensive therapy. "I felt excited to go to school again – it wasn't a constant grind while I was dealing with a flare-up. It allowed me to expand my horizons again to being more than just my illness and trying to get my school work done. I am very thankful for the support that HEAL and my school gave me during my high school career."

Growth toward independence

Expanding his horizons meant being able to apply for college, which raised many questions beyond "will I be accepted" for Hari and his family. As it does for many, college would be his first time being away from his parents, but with the added concern of what that meant for managing his conditions on his own. That confidence for independence was a major element of the therapy that Dr. Bhandari provided to Hari and his family over the years.

"Parenting a child with chronic illnesses and pain can be counter-intuitive. We have to help parents learn how to support their child to move despite their discomfort, communicate effectively and empathically, and learn strategies to encourage function," said Bhandari. "Parents are hard wired to protect their kids, especially when they are sick, they want to do everything for them. So we re-teach parents to encourage their child to function as independently as possible in a supportive environment."

"The whole process around applying to colleges was nerve racking," said Hari. "I didn't know if I would be ready to go to college or if my health would allow me to. Would I be able to handle the rigor, away from parents and doctors?"

"The application period was tough," his mother recalls. "He was having health complications and Jeanne (Kane) was a huge help again, to target the right schools for him, both academically and for his health."

When he received his acceptance to UC Davis, the joy and accomplishment was a celebrated victory for everyone in his life as well as a sense of relief for his family, knowing that he wouldn't be too far away.

"I feel so honored to work with him," said Kane. "He fought so hard to get to where he is."

And now, just days from moving onto campus, Hari's preparation for college involves quite a lot more than the standard dorm room outfitting and supply gathering.

"I met with the university's disability service department and they have a great system in place for providing accommodations that students like me need. I am working on a lot of health related prep too – like learning to self-inject my medications, figuring out where to go for care, tracking my many appointments and providers. There is an adolescent transition program at Packard that helps young people move toward independence in their medical care – that has been helpful."

According to Berquist, Hari and his care team are finding success managing Hari's conditions immunosuppressive treatment which requires IV infusions monthly. Hari will be back to Stanford once a month to receive his infusions. His mom will be happy to see him, and says she's getting advice from other moms with kids in college to "not be obsessive and show up at school all the time."

As for Hari, "I'm most looking forward to being a college student, feeling like a normal kid, not feeling different, not being a patient – getting the chance to live my life."