Medical Coping Clinic
Fitting in again
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.
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
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
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."
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.
|" We know we have a place
to turn, whether it's for Cole or for the rest of the
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
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."