Phenylketonuria (PKU) is a rare genetic disease, due to an inability to break down phenylalanine, a protein building block. High levels of phenylalanine can cause permanent mental disability. Even in children whose phenylalanine levels are controlled, there are indications that the disease may cause learning disabilities.

One of the tools that parents and caregivers can use to help their child with special needs at a public school (including charter schools) is an individualized education plan (IEP).

What is an IEP?

An IEP is a detailed educational plan  that you build in collaboration with your child’s school administration and teachers, based on the recommendations of the child’s healthcare team. The IEP lays out any special accommodations that your child may need, and the support and services that the school or daycare will provide.

Private schools do not offer IEPs, but may have alternative service plans.

How do I build an IEP for my child?

Start by talking with your child’s doctor about what specific needs your child may have. Questions to ask your doctor could include:

• What are the symptoms to watch for at school?
• Will your child need medical care while at school?
• Will they need extra time with exams or assignments?

Next, you will need to talk to school administrators about the services they can provide. Outline your child’s schedule and include benchmarks for their schooling. You may want to ask:

• Will the school provide lunch or snacks that are within your child’s diet?
• If your child needs medical care, can the school nurse do this?
• How will your child be tested in comparison with his or her peers?
• What goals do you have for your child’s time in school?

Make changes when necessary

The IEP may need to change as your child grows. After a few months or a year, some accommodations may not be necessary while new ones may need to be added. Discuss changes with the school and your child’s physician as needed. Usually, you will review the IEP with the school every year.

Last updated: Aug. 27, 2020

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Phenylketonuria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.