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• Physical activity (recess or PE) - Academic plans ( IDEA, IEP, 504) - Scholarship and Financial aid opportunities
Parents are the advocates for CF children in the classroom. Teachers are required in today’s world to accommodate children with a wide variety health and academic needs utilizing more resources at a time when classrooms are crowded, aides are scarce, and the school nurse serves many schools. It is important for parents to understand some of these limitations. Communication is the single most important tool parents and teachers share. There should be discussion with parents, teachers, school nurse, and other appropriate faculty about what accommodations or modifications may be necessary prior to the child starting school. It should also be discussed who should be informed about the child’s condition. Some patients and parents are open about their disease while others prefer total privacy. As with any school issue, confidentiality is important. Understanding a child’s rights, building communication with teachers, and anticipating and outlining any modifications that might be necessary are all factors to a child’s success in managing class work and feeling comfortable in the classroom.
CF is a genetic disease affecting approximately 30,000 children and adults in the United States. People with cystic fibrosis (CF) may not appear to be severely ill. CF is a chronic disease and is characterized by a defective gene, which causes the formation of abnormally thick, tenacious mucus. The presence of this mucus leads to severe respiratory and gastrointestinal complications. CF does not effect one’s intelligence or ability to learn. CF is not contagious and affects each person differently. For instance, one student with CF may be well enough to attend school either full or part time while another student is limited by the severity of their disease to attend school regularly. Each student with CF should be assessed on an individual basis for physical and emotional health.
Students with CF may have the following symptoms: Persistent wheeze or cough, recurrent respiratory infections/pneumonia, excessive appetite but poor weight gain due to difficulty in digesting food, and small growth stature. People with CF follow a daily treatment regimen to control their disease. Respiratory treatments that help clear the abnormal secretions in the lungs include chest physical therapy (CPT). CPT is usually performed 2-3 times a day routinely. Once before school, after school, and before bed. Some children may benefit from having their CPT done during school to help breathe more easily. Students with CF will also inhale a variety of medicines each day. These may also be needed during school hours. To defend their lungs and prevent harmful mucus buildup, students with CF will cough frequently. This should not be discouraged, as any attempt to suppress the coughing could be health risk. Pointing out this condition may also be embarrassing for the student. If you accept the coughing, other members of the class will too. A student with CF may need to keep tissues at their desk to cough or clear their throat into. They also may need additional water fountain privileges. Remember CF is not contagious.
The gastrointestinal complications of CF occur in digestion and malabsorption of the fats, proteins, and carbohydrates. Students with CF will require special pancreatic enzyme supplements to aid digestion, a special diet with increased calories and protein, and vitamin supplements. Pancreatic enzymes are taken prior to meals and snacks. These enzymes help the body absorb nutrients from food and reduce the number and bulk of stools, the amount of gas, abdominal pain, and distension. These medications are not habit forming or mood altering. Enzymes are a naturally occurring product derived from an animal source. Most children have been taking their enzymes since infancy and can take them on their own. There is no need to lock these medications in a desk or store them in an office. Students can carry their enzymes in their lunch box and take them with their meals and snacks. Parents can be responsible for the number of pills and for a proper storage container. Some students may feel embarrassed about taking pills in front of their classmates. Some may hide, forget, or throw away their enzymes. If a student neglects to take this medicine, they will experience abdominal pain and need to go to the bathroom more than usual. If this is a problem, the student may need supervision while taking medication. Students with CF need frequent restroom privileges, as flatulence can be odorous and embarrassing. They may also need additional snacks or dietary supplements during the day for weight maintenance. As with the coughing, the less attention drawn to the students diet and pill taking, the more comfortable the student will feel.
Teachers can play a role in assessing if a child is falling behind academically and may be exhibiting more health problems such as fatigue or workload seems too difficult. This may be a sign of worsening in the child’s health. Ten years ago the life expectancy of a person with CF was an average of 18 years. Advances in research and treatment have helped extend median survival to greater than 33 years. As a teacher, you have an important role in encouraging a child with CF to pursue their academic goals and prepare for adulthood as we hope the survival age will continue to increase.
Physical activity helps in clearing mucus from the lungs. Include a student with CF in all games and activities in which they are able to participate. Exercise is not only healthy for maintaining strength, endurance, and mobility, it promotes a sense of wellness and being part of the group. It is important to remember the extent of a CF student’s participation may be limited by their tolerance level depending on disease severity. The child with CF also has reduced tolerance to heat and loses an abnormally high amount of salt through their sweat. You even see salt crystals on their faces after playing or P.E. This puts them at risk for dehydration, electrolyte imbalance, and even heat exhaustion. Students with CF should be allowed to carry water or sports drinks, and eat salty snacks during hot weather.
Students with CF often miss school for frequent doctor’s appointments, short periods due to stomach ache, or fatigue. When necessary, the doctor will admit the child to the hospital for a week or two in order to control a lung infection with IV antibiotics. Tutorial support must be instituted in a timely manner for the homebound or hospitalized child to prevent the student from falling behind. It may take the student with CF longer to complete assignments due to fatigue and home health-care regimens. It is important for the school and parents to work together.
At some point, everyone with CF has to decide when or if to tell someone they have CF. Some people worry they will be treated differently or that people won’t want to be their friend. Teachers should discuss this issue with the family as some parents do not want the child’s condition known, and this should be respected. Teacher’s may also be mindful of what exactly the child knows about their illness as some parents may not have told the child certain details such as infertility or a shortened life expectancy. Most CF physicians, social workers, and psychologist suggest being open and matter-of-fact about CF. This doesn’t mean a child won’t occasionally face an inconsiderate person who might say something hurtful, but it’s a lot easier to go about life without trying to carry around secrets. After all, close friends will care and want to know. Friends knowing about CF will avoid awkward situations like when taking pills before eating, needing to go the restroom more frequently, or coughing spells.
(information provided by the CF Foundation’s Advocacy Manual: A Clinician’s Guide to the Legal Rights of People with Cystic Fibrosis)
• Scholarship and Financial Aid Opportunities (information provided by the CF Foundation’s Advocacy Manual: A Clinician’s Guide to the Legal Rights of People with Cystic Fibrosis)
University of Arkansas for Medical Sciences Department of Pediatrics Section of Pediatric Pulmonology Arkansas Children's Hospital 800 Marshall Street Little Rock, AR 72202 Send Comments |
