Cystic Fibrosis (CF) is an inherited disease which affects mainly the lungs and the digestive system. The degree of cystic fibrosis severity differs from person to person. Traditionally, the life expectancy for people with CF is lower than that of the general population; however, advances in treatment and care have continually increased this life expectancy in recent years.

Typical complications caused by CF are:

• Difficulty with weight gain due to problems absorbing fats and proteins
• Sinus infections and chronic nasal congestion
• Malnutrition and vitamin deficiencies because of inability to absorb nutrients
• Some patients can acquire CF related diabetes or CF liver disease

A new cystic fibrosis diagnosis can be overwhelming for families and patients. Our Pediatric ACU team is here to help and support you through your journey and ensure you have prioritized access to high-quality care and treatments.

Early diagnosis of cystic fibrosis happens through newborn screening programs. After a baby is born, a small blood sample is taken from the baby’s heel. The blood sample is sent to a laboratory, where it is screened for a number of different health conditions.

The laboratory screens for cystic fibrosis by testing for a specific chemical. If the initial screen for the chemical is high or positive, more testing at a specialized CF clinic will occur. These tests will include a sweat test and other bloodwork.

The “sweat test” is a good test for diagnosing cystic fibrosis. It is an accurate test, detecting abnormal functions of the cystic fibrosis protein. It measures the amount of chloride (salt) present in the sweat. The sweat test does not hurt at all, and is done by collecting a small amount of sweat from the skin.

Treatment programs are tailored to individual needs and vary depending on the stage of the disease and which organs are affected. Treatments followed usually include:

• Performing regular airway clearance to help prevent a buildup of thick mucus in the lungs
• Taking pancreatic enzymes with all meals and snacks to aid digestion
• Eating well and taking vitamins and nutritional supplements as needed to promote good nutrition.
• Taking antibiotics to treat lung infections
• Exercise

This is also a very exciting time in CF treatments. Several cutting edge medications have become available for use in young children with CF. Ask your health care team if your child qualifies for any of these treatments.

It is ideal to pre-order your medications two weeks prior to your CF visit.  Contact the Pharmacist at 705-523-7100, extension 5511.

Only healthcare providers can refer to the Pediatric CF Clinic. Adults with CF can access the clinic directly by calling 705-523-7120, extension 3263.
 

 Provider Referrals

Pediatric patients are referred by their Pediatrician, Family Physician, Nurse Practitioner, or the Newborn Screening Program.

To refer, complete the NEO Kids - cystic fibrosis referral form.

For assistance, please call NEO Navigation, central intake team at 705-523-7120.

• Assistance for Children with Severe Disabilities
   
• Assistive Devices Program
   
• Cystic Fibrosis Canada
   
• Ontario Disability Support Program