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Medical / Dietary Needs

What you need to know

Children with CF have a variety of needs, which may include:

Access to food and drink
  • A high-calorie/high-protein diet in order to gain weight and grow
  • Extra food at lunch
  • Time to finish lunch
  • Frequent opportunities during the day for snacks and drinks
    • These may include high-calorie nutrition supplements
  • Fluids and salty snacks such as pretzels or potato chips or salt tablets  
    • Needed before, during, and after physical activity or when the temperature is hot indoors or outside (see section 4).
Digestive Enzymes and Vitamins
  • To help with digestion, they may need to take pancreatic enzymes along with meals and snacks. 
  • They may also need vitamins and other supplements. 
  • Some schools expect a child to go to the school nurse’s office for medications. 
    • However, since most children have been taking pancreatic enzymes since infancy, a student may prefer to handle the medication and vitamins on his or her own. 
    • When the child and parents prefer this approach, it should be supported and encouraged.   
    • Enabling children to manage certain medications is an important step in building confidence and minimizing feelings of “being different” 
Managing Cystic Fibrosis Related Diabetes (CFRD)
  • Children with CFRD will need to monitor their blood sugar.
  • They need ongoing access to snacks or drinks to maintain their blood sugar.
  • They may also need to take insulin. 
Coughing
  • CF can cause a lot of coughing, sometimes producing mucus. 
  • Coughing helps the body to clear the lungs, so it should be encouraged. 
  • If it is disruptive or embarrassing, the child should be allowed to leave and get a drink of water. 
  • The child should have tissues nearby. 
Restroom Privileges
  • Although enzymes help with digestion, children may still experience abdominal pain. 
  • They may take frequent trips to the bathroom. 
    • Access to a private bathroom, such as in the nurse’s office, may help prevent embarrassment.
Staying Healthy

In order to reduce exposure to germs, children should wash their hands frequently.

  • A cleansing hand gel should be used when soap and water aren’t available. 
  • Other children who are ill should be encouraged to wash their hands often and use tissues when sneezing, coughing, or blowing their noses.

What you can do

  • Meet with the child, parents, and the school nurse or health coordinator before the child first enters your class to learn about his/her specific dietary and medical needs. 
    • If a child transfers in later, schedule this meeting as soon as possible.
    • A child must not be kept from attending classes while special dietary and medical needs are determined.
    • Create a plan to address needs.
      • If the child does not already have an Individualized Education Plan (IEP) under IDEA or an accommodation plan (Section 504 of the Vocational Rehabilitation Act), consider making a referral.  
      • An IEP or a Section 504 plan requires a clearly defined outline for how the school will make accommodations for the child’s health condition, including managing dietary and medical needs.
      • Section 2, Educational Supports, includes more information on IDEA and Section 504 and examples of possible dietary and medical accommodations for a child with CF.
      • At a minimum, a child with CF should have an emergency plan that all staff (including subs/volunteers) are prepared to follow (see section 6).
    • Notice if the child seems extra tired, is coughing more, and/or shows other medically related needs.
      • Talk to the child, school nurse, and child’s parents about your observations.
    • Be aware, or ask parents, if the child has a medical alert bracelet.