What you need to know
Children with CF have a variety of needs, which may include:
- 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
- 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”
- 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.
- 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.
- 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.
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.