Procedures for Students with Cystic Fibrosis

Definition

Cystic Fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system.  CF affects about 30,000 children and adults in the United States.  A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that can clog the lungs and cause life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Effective July 1, 2010 Florida Statute 1002.20 was amended to allow students with CF to carry and self-administer a prescribed pancreatic enzyme supplement while in school,
participating in school-sponsored activities, or in transit to and from school or school-sponsored activities if the school has been provided with authorization from the student’s parent and prescribing practioner.

Signs and Symptoms

People with CF can have a variety of symptoms, including:

  • Very salty-tasting skin
  • Persistent coughing, at times with mucus or phlegm
  • Frequent lung infections
  • Wheezing or shortness of breath
  • Fatigue
  • Physically smaller than classmates
  • Upset stomach
  • Frequent greasy, bulky stools or difficulty in bowel movements

Living with CF at School

CF is not contagious and affects each individual differently.  Therefore, one should not make a generalized assumption about the health of someone with CF. Some people with CF are in good or even excellent health, while others are severely limited by the disease and are unable to attend school regularly.

Most children with cystic fibrosis can attend school and should be expected to take part fully in school activities, including sports and other extracurricular activities.  It is important that teachers are educated about CF and that teachers, parents and students work together as a team to promote the best learning experience possible.

Children with CF often have respiratory treatments provided by a licensed Respiratory Therapist.  These treatments should be scheduled during non-school hours, so that educational time is not missed.

Special considerations may need to be made for a child with CF who is ill in order to maintain their schoolwork.  Additionally, children with CF may cough frequently or need multiple trips to the bathroom.  Neither should be discouraged, as they are the result of how CF affects the body.

Medication Authorization For Students

In children with CF, thick mucus often clogs the pancreas and blocks digestion.  To treat this, oral pancreatic enzyme medicine is taken with all meals and snacks that contain fat, protein, and/or complex carbohydrates.  Foods that are mainly simple carbohydrates (like juice, fruits, fruit snacks, sports drinks, and soda) do not require enzymes to be taken since they are easily absorbed.  Oral pancreatic enzymes are not addictive and will not change the child’s behavior.  Pancreatic enzymes do not cause a problem if taken by another child.  As always, if a child takes medicine not prescribed for them, call Poison Control at (800) 222-1222.

If pancreatic enzymes are prescribed for a child to take during school hours or on field trips, a completed Authorization for Medication/Treatment Form is required.  The form is to be filled out by the student’s physician, signed by the parent and presented to the school along with the medication.  As noted above if the physician and parent authorize the student to carry and self-administer the pancreatic enzymes then the student is permitted to do so.

Hospital Homebound/Dual Enrollment

If a student has a history of frequent absences, then the school should have the parent consider filling out an application for dual enrollment in the hospital homebound program.  By planning for dual enrollment at the beginning of the year, a parent can be reassured that the student will be assisted in keeping up with the core courses.

In-service

At the initial meeting with the parent, the school nurse (if applicable) and the classroom teacher, a plan of action should be discussed about in-service on Cystic Fibrosis for the appropriate school staff and the specific information needed to assist the student.  The assigned school nurse (if applicable) should plan to provide in-service education to teachers, clerical staff, bus drivers, and food service personnel.

A Health Services Request (HSR) form must be faxed to Coordinated Student Health Services at 754-321-2743 to schedule a Cystic Fibrosis in-service. To obtain a copy of the HSR please go to the Coordinated Student Health Services web site @ www.browardschools.com.  If you need further assistance you may call Coordinated Student Health Services at 754-321-1575.