Our multidisciplinary care
Physician care
Our CF Center physicians are board-certified in pediatric pulmonary medicine
and have received training in cystic fibrosis care. They coordinate the
outpatient care of children with the CF team and rotate weeks supervising (or
directing) the care of patients that are hospitalized. Our physicians are
actively involved in clinical research. There is always a pulmonary physician on
call, 24 hours a day, seven days a week.
Nursing care
Our experienced pulmonary nurses are available to coordinate your many CF
care-related needs. This may include home routines, management of acute
illnesses, obtaining and interpreting test results, providing medication
information and prescription refills, negotiating adherence with your child,
interfacing with school and home care needs. There is a nurse available at each
regularly scheduled outpatient visit and by telephone Monday through Friday.
Respiratory care
The purpose of providing respiratory care is to prevent a decline in lung
function. Early treatment of the lungs may include the use of airway clearance
techniques (ACT) that mobilize secretions, inhalation therapy to deliver
medications to the lungs, early treatment of respiratory illnesses, and the use
of medications that have proven to be effective in CF. These form the foundation
of respiratory care in cystic fibrosis.
Our experienced respiratory therapists teach patients and families airway
clearance techniques tailored to individual needs and abilities. This may
include chest physical therapy, Flutter®, acapella, the vest, and autogenic
drainage. The therapists also perform an ongoing assessment because ACT options
may change as your child grows older.
Inhaled medications are often prescribed; proper use and cleaning of
equipment is important. Our therapists teach patients and families proper
technique and provide instruction on the recommended cleaning and sanitizing of
respiratory equipment.
Nutrition care
Optimal nutrition helps keep lungs healthy and allows the body to fight
infection. Our nutritionists play an active role in the care of our patients.
Height, weight and body mass index are reviewed at very visit to assess growth.
In addition, the nutritionists review enzymes, gastrointestinal patterns,
vitamin supplementation, individual eating habits, mealtime behaviors, and
sports and school lunch schedules. They collaborate with the patient and family
on nutrition strategies and problem solve around obstacles.
Our two CF center nutritionists are available for inpatient care, outpatient
visits and interim phone calls. To provide practical assistance in meeting
nutrition goals, we publish a CF nutrition newsletter called "Nutrition in
Bite-Sized Pieces" and the "Recipe Corner."
Each issue focuses on a specific nutrition topic in detail and provides
practical information to help our families be successful.
Occasionally, individuals with CF have trouble gaining weight, despite the
use of high-calorie foods and drinks. Tubefeeding is a healthy option when
eating enough is difficult. Read
more here about tubefeeding (gastrostomy or G-tube; and nasogastric or NG
tubefeeding — in PDF format). This brochure contains the success stories from
four patients (a toddler, a teenage boy and girl, and an adult) and their
families who have experienced tubefeeding firsthand, and their advice to others.
More information here on CF
Nutrition Resources.
Social work
All families experience stress when a member has a chronic illness. This
stress is usually caused by a number of factors such as financial concerns,
worry, or not having enough time in the day to get everything done. The CF team
social worker is available to assist families in managing this stress by
partnering with them to find solutions. The social worker is present at most
clinics and is available during the week by phone in order to provide support,
answer questions and make referrals. She also performs routine psycho-social
assessments in order to assist the team in providing comprehensive care to the
children and families who use our center.
Through the Connections Program, the CF Center at Children's Memorial
sponsors two types of group meetings for families. Quarterly information
meetings are offered at each outpatient location (Lincoln Park, Westchester and
Glenview), and a group for parents of newly diagnosed children meets annually.
Our social worker is present at all these meetings.
Genetic counseling
Cystic fibrosis is an inherited disease whereby an individual inherits two
abnormal CF genes, one from each parent. When an individual is known to have CF,
it is possible that other family members could be affected by CF or be a carrier
(someone who inherits one abnormal gene from just one parent). Genetic
counseling is helpful in understanding how CF is inherited, what the chances are
that another child born from the same parents could also have the disease (or be
a carrier), what the recommendations are for CF carrier testing for spouses, and
fertility options.
A genetic counselor meets with each new CF family and is also available for
consultation during regularly scheduled outpatient visits. Please notify the CF
Center if you wish to see the genetic counselor.