What you need to know
School staff should treat a child with PKU as a normal healthy member of the class. However, children who have PKU need a Low Protein/Low Phenylalanine (PHE) Diet. PHE is found in all foods that contain protein. Therefore, children with PKU need to restrict their intake of protein. Also, avoid aspartame, an artificial sweetener (i.e. NutraSweet or Equal) containing PHE.
Children with PKU often have a special drink. It has most of the protein, vitamins, and minerals that other children get from their foods. The amount of drink and food a child with PKU has daily is carefully calculated by the family and nutritionist. Allow the child to bring their snack/foods into the classroom. They may need access to a refrigerator for special formula. They may also need access to a microwave.
It is extremely important not to allow any food that is forbidden. Even a little taste can result in an increase in PHE levels in the blood. Supervision of younger children with PKU may be needed to prevent sharing or “tastes.”
According to the National PKU Alliance, public schools are required to make modifications in their meal programs under USDA guidelines for Children with PKU. It is important to be sensitive to cultural differences in diet.
Some children may be on a medicine in addition to their diet to help control their PHE levels. This medicine will be administered by the parents.
Be aware, or ask a parent, if the child has a medical alert bracelet.
What you can do
Good communication with parents is very important. Let parents know if a child eats any food not allowed. Also, tell them if the child doesn’t eat all the foods or formula sent from home. Involve parents to ensure that the student has a safe treat on special days. Parents should send in a supply of low PHE snacks that can be stored in the classroom. Work with cafeteria staff to support the special diet and make it easy for the child to be included.
Explaining Dietary Differences to classmates can be helpful. It is a good idea to involve the family and child in the explanation. A few ideas to think about:
- Children understand the idea of a food allergy.
- Discuss general differences within the class. Emphasize that all people are different.
- People eat different foods (food customs, religious reasons, and regional differences, vegetarian, etc.).
- People have different diets (diabetes, etc.) to help their bodies.
- Involve the school nurse.
Detailed lists of foods not allowed, allowed but controlled, and free food are not available on-line, however most parents have a list and a pocket-sized version is available for purchase from How Much Phe.
Children with PKU can always have an apple. It is a Phe-free food.
Picture courtesy of National PKU Alliance