Back to School With PKU!

August means back to school! Fresh new pencils, markers, and paper! For parents of kids with PKU there is also worry: Will the school staff understand? Will they help my child adhere to the diet? Will the other kids make fun of my child for being different?

Individuals with PKU qualify for accommodations and protections under federal law. There are three federal laws related to protecting students with disabilities: The Individuals with Disabilities Act (IDEA), The Americans with Disabilities Act (ADA), and The Rehabilitation Act of 1973, Section 504. All these laws deal with disability, and it can be emotionally difficult to think of our children as disabled. As we consider the effects of phe on the brain, we are confronted with the reality that our kids with PKU may face extra challenges in the classroom. PKU is specified as a qualifying condition in the policies of the US Department of Agriculture (USDA). The use of the federal protections, such as Section 504 can help ensure kids with PKU have equal opportunity for success at school. Some children will need a more in depth, formal plan called an Individualized Education Plan (IEP).

Symptoms of high phe levels in the classroom may not look different from what you see at home, however, they can be more pronounced in a large group setting

  • Attention and memory issues
  • Planning and organization issues
  • Fatigue

Many schools offer families a “Student Health Plan” rather than a Section 504 (or IEP). For some students, a health plan may work just fine for others, more details are needed. See examples of all three here.

Section 504 or IEP provide detailed instructions for school staff regarding an agreed upon pathway to ensure success of your child. These accommodations will include diet and food but also specific educational techniques for use in the classroom. You work with your child’s school teacher, counselor, nurse, and sometimes other school staff to create the accommodations that your child will need.

Getting started:

  • Contact your clinic. A nurse, social worker, or the dietitian can assist in writing a letter to the school. You will also need to have them complete a specific from from the USDA or your school district, generally called “Medical Statement for Children with Special Dietary Needs.” Many school districts have adapted the form but they all must match the federal guidelines. Sample here.
  • Contact your school nurse. Optimally, do this in the spring regarding the next school year. BUT, it is NEVER TOO LATE to make that call.
    Schools are mandated to schedule a meeting with you within three days of your request (scheduling the meeting, not necessarily having the meeting within three days)
  • Prepare for the meeting: review your resources, thoughtful consider your child and their unique abilities, and try to anticipate where they might struggle. Remember, it is never too late to request this meeting…even if your child has made it thru multiple grades or is in high school and has never had a plan, you can still create a plan. See this Educators Guide to PKU.
  • More info on plans and types of accomodations:

Consider how you want your child’s diet to be accomodated. Federal law mandates that any school using USDA funds provide “substitutions to the regular meal must be made for children who are unable to eat school meals because of their disabilities, when that need is certified by a licensed physician.” (source: Accommodating Children with Food and Nutrition Service Special Dietary Needs in the School Nutrition Programs by USDA). Federal law also mandates that families cannot be charged extra (above the regular cost of the meal for all students) to be provided substitutions on the menu.

That said, this program is an “unfunded mandate” this means schools must look for other resources to fund the purchase of specialty foods. This can include the food service budget, district general funds, and Parent-Teacher Organizations.

Experience shows us that many schools will tell families that there is absolutely no funding available to provide meal substitutions. This does not release them from the requirement. If time is short and the district is difficult, here are some options to start with (ask for the low-hanging fruit, so to speak):

  • Double portions of lower-PHE fruits and vegetables (provide them a list). Skip the entree.
  • Request Udi’s™ GF bread. Most schools already purchase this for children with Celiac Disease.
  • Milk substitution on the tray such as a coconut milk. Again, many schools are already purchasing milk subs for children with milk allergies.

Schools need to find funding to purchase special low-pro foods that would be served in place of the regular entree. Until then, think about how you can provide some of your child’s favorites alongside the school meal.

Provided by school Provided by family
Entree-sized salad,
sides of low-PHE vegetables and fruits,
milk substitute
Medical formula
Low-PHE cookie
Low-PHE cheese shreds
Grilled cheese sandwich:
Udi’s bread,
side salad,
sides of low-PHE vegetables and fruits,
milk substitute
Medical formula
Favorite cheese substitute
Low-pro (off the shelf) noodles like Rice Sticks,
Miracle Noodle, or a gluten-free pasta,
depending on tolerance
low-PHE sauce (Trader Joe’s),
sides of low-PHE vegetables and fruits, milk substitute
Medical formula
Jackfruit tacos (Cook for Love recipe),
sides of low-PHE vegetables and fruits,
milk substitute
Medical formula
Cook for Love recipe
Tomato soup,
grilled cheese sandwich: Udi’s bread,
sides of low-PHE vegetables and fruits,
milk substitute
Medical formula
Favorite cheese substitute

Some kids will prefer to take their own lunch. Resources at Cook for Love or Taste Connections can help with meal ideas.

There is no single, correct way to approach school for kids with PKU. but there are a number of resources to assist families with the task. Knowing your legal rights, resources, and a few ideas for accomodations can really help not only boost your confidence but also will help the schools better assist you.