Children's Medical Coping Clinic

Fitting in again

Photos: Suzanne Camarata

by Julie Kinney

A child's illness affects patient and family, body and mind. Children's Hospital Boston's Medical Coping Clinic helps put the pieces back together so life can return to normal.

A typical day for 7-year-old Cole Pasqualucci used to include sports of all kinds—basketball, soccer, bike riding, and, above all else, street or ice hockey, depending on the time of year.

So, last July, when he awoke with swollen eyes, his mother, Kim, thought all of the time outside had caused Cole's allergies to flare up. His pediatrician prescribed an allergy medication, but the swelling continued and even spread to his belly and legs. After two weeks, the Pasqualuccis came to Children's Hospital Boston, where Cole was diagnosed with nephrotic syndrome, a disease in which the kidneys leak large amounts of protein into the urine. Instead of being soaked up in the blood as it normally would, water seeps into body tissue, causing swelling in the eyes, ankles and other body parts.

The Pasqualucci family's summer went from warm, relaxing days to stress-filled drives from their Scituate home to Boston. Cole failed to respond to the steroids doctors prescribed. The family returned home one day and was back in the hospital the next week, Cole's swelling even worse.

This time, Cole remained at Children's for two months, his mother sleeping in a chair next to his hospital bed and his father relieving her on weekends. A biopsy revealed that Cole's kidneys suffered from Focal Segmental Glomerulosclerosis (FSGS)—scarring of the kidney—which doctors believe caused the nephrotic syndrome. "Our goal is to decrease the protein leak in Cole's urine and achieve partial remission," says Avram Traum, MD, a fellow in Nephrology. "FSGS doesn't go away, which means Cole and the Pasqualuccis will need to manage his swelling by limiting the fluid and salt intake that cause water retention and add to the swelling." The added diagnosis meant more medications, more sickness and no promise of relief. In fact, Cole will likely need one or more kidney transplants in his lifetime.

When Cole Pasqualucci, left, changed schools last year to be in the same class as some of his friends, a psychologist from Children's Medical Coping Clinic went to his new school to explain Cole's illness to his fellow first graders.

Though they were returning home with a medical answer, the Pasqualuccis turned to Children's Medical Coping Clinic (MCC) for support with all the other psychosocial issues the illness raised. One of several Psychiatry Department outpatient clinics, the MCC helps patients and families adapt to chronic illness, life-threatening disease, medical procedures or traumatic injury by providing resources, as well as cognitive, emotional and behavioral coping strategies.

The Pasqualuccis wanted to help Cole adjust to a very different life than he was used to. On the drug Cytoxan, one of a series of medications to control his kidney function, Cole was able to go home, but was tired and very sick from September to December. Though he returned to school, he attended class only sporadically. And when he was there, he suffered the taunts of classmates.

"As a mother, there is almost nothing worse than seeing your child suffer and being unable to help him," says Kim. "We all needed help in dealing with his illness. My husband and I felt tremendous anxiety. And Cole's older sister, Hannah, was afraid for her brother, but also lonely for attention from her father and me."

Jenny LeBovidge, PhD, a Psychology fellow in the MCC, has been meeting with Cole since last September, when he started his outpatient treatments. At their meetings, the pair discusses Cole's feelings and frustrations between games of Go Fish, Trouble and Boggle. "We brainstorm ways he can respond to teasing, and identify his strengths and activities he can still participate in," says LeBovidge. "It's a safe setting to discuss what is going on with his illness, with his life and in his mind."

" We know we have a place to turn, whether it's for Cole or for the rest of the family."

Cole has since changed schools and is riding the bus with neighborhood friends and thriving, says his mother. In addition to meeting with Cole and Kim Pasqualucci, LeBovidge acts as a liaison to his school, monitoring his academic and social needs. In April, LeBovidge joined Cole and his first-grade classmates at Cushing Elementary School in Scituate to discuss nephrotic syndrome and allow Cole to share his medical experiences. "We put things in terms that they could understand," explains LeBovidge. "We addressed his puffiness and swelling, along with the fact that Cole's disease is not contagious. And we talked about how kids can be good friends by not teasing, or by playing quiet games with Cole when he's tired." LeBovidge also touches base with Kim about the impact of chronic illness on Cole's sister Hannah.

A primary goal of the MCC is to help patients and families identify and build upon strengths, says Pamela Beasley, PhD, who oversees the MCC and is the director of the Pediatric Psychiatry Consultation Service. "One family may be very close, and another deeply religious. Others may have creative talents or outlets," says Beasley. "Some children find strength in staying connected with peers through letters, and others through writing about or illustrating their medical experiences."

In 2003, the MCC, which comprises staff psychologists, psychiatrists, and trainees rotating through the clinic, provided care for 254 Children's patients. In addition to the traditional counseling and medication, the MCC provides behavioral therapy, such as hypnosis, relaxation strategies and biofeedback.

"Jenny's relationship with Cole has really helped him understand and cope with his illness," says Kim. "Her support has made for a smooth transition back to school and other activities."

While Cole continues to have good and bad days, he has returned to the ice as a member of the Scituate Sea Hawks hockey team. "We know Cole's nephrotic syndrome isn't going away, but we're all learning to cope with it thanks, in large part, to the Coping Clinic. We know we have a place to turn, whether it's for Cole or for the rest of the family."