Kellisa is a spirited and smart young lady. At 19, she is busy planning for her future: going to college full-time to become a social worker, playing “extreme” sports and even planning for an upcoming wedding all keep her sharp mind busy. Meanwhile, she is also busy caring for her body: taking 35 pills every day, undergoing intrapulmonary percussive ventilator therapy, a form of chest physical therapy administered to the airways by a pneumatic device for 30 minutes each morning and having intravenous feedings six hours every night while she sleeps.
Kellisa is much more of a fighter than most teenagers. She was diagnosed at the age of 6 with cystic fibrosis (CF), a genetic disease involving the buildup of thick, sticky mucus that clogs the lungs and obstructs the pancreas. The condition causes serious respiratory damage and nutritional deficiencies. Nonetheless, Kellisa has fought the disease for the last 13 years and leads a pretty normal life, thanks to the Cystic Fibrosis Center at Miller Children’s Hospital.
“The Pediatric Pulmonary, Allergy and Cystic Fibrosis Center at Miller Children’s Hospital offers fully integrated, state-of-the-art, multidisciplinary medical care, ” says Eliezer Nussbaum, M.D., medical director, Pulmonary, Miller Children's Hospital. “Our Center is one of the largest in the U.S. and uniquely balances leading therapies with caring and compassionate family centered care to children and their families.”
Today, Kellisa is motivated to crack open the books and study CF and take an active part in fighting back against her condition. Collectively, the team of pulmonologists and gastrointestinal physicians—along with Kellisa—have come up with a treatment plan that allows her to only visit the Center about four times a year. And that’s something worth fighting for thanks to the specialized care at Miller Children’s Hospital in Long Beach.
Cystic Fibrosis Program
Miller Children’s Cystic Fibrosis program is one of the largest in the U.S. and provides comprehensive, multidisciplinary care including evaluation, diagnosis and treatment for children from birth to age 18, with Cystic Fibrosis (CF). The program also provides comprehensive care, including diagnostic testing such as, sweat tests, genetic tests, throat cultures, sputum cultures, blood work and chest x-rays.
Symptoms of cystic fibrosis may resemble other conditions which is why it is always important to consult a specialist for diagnosis. However, each child may experience symptoms differently. Infants born with CF usually show symptoms within the first year. Some children, though, may not show symptoms until later in life.
The following are the most common symptoms for CF:
- Frequent episodes of wheezing
- Frequent episodes of pneumonia
- Persistent cough
- Poor growth
- Clubbing of fingers and toes (the ends of the fingers and toes become enlarged)
- Pneumothorax (the presence of air or gas in the plural cavity causing the lung to collapse)
- Hemoptysis (coughing up blood)
- Abdominal pain
- Skin that tastes like salt
- Greasy or foul-smelling stools
CF Tests & Treatment
There isn’t a cure for Cystic Fibrosis (CF), but tests and treatments are available to help the child and their family members manage the condition. Tests and treatments can also help identify preventative measures that need to be put into place, such as rest, enzyme treatments, medication or even hospitalization.
Enzyme Treatment & Nutrition
Children that have CF need a high-calorie, high-protein diet and are prescribed enzymes to gain weight and grow. Extra snacks at school and high-calorie nutrition supplements may be needed to increase caloric intake. Children with CF need high-fat foods, even though that is generally discouraged to the general population. Also, children with CF need to take their enzymes in a reasonable timeframe both at school and home, that allows them a good amount of time to eat.
Exercise & Activities
Exercise and activities help build muscle and strong bones, strengthen the lungs, clear lung mucus and lower emotional stress for children with CF. Children with CF can and should be included in games and activities. However there are days, where CF can limit how much a child can do. Fluids are crucial during exercise and activities for a child with CF, because they sweat less, lose more salt and create more heat during exercise.
Salt can be replaced by eating salty foods like pretzels or potato chips. Sports drinks are best for children with CF because they have added carbohydrates and salt which give fuel to the muscles and keep blood sugars up.
Approved CCS Center
The Cystic Fibrosis Center at Miller Children’s is a California Children’s Services (CCS) approved Special Care Center (SCC). This means a specially designated multidisciplinary care team is responsible for all care coordination and case management of a patient in this program. Patients typically qualify for the Cystic Fibrosis CCS Special Care Center by medical diagnosis, complexity of their disease and financial status.
Visit the Cystic Fibrosis Center.
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