One Family's Positive Experience with the School Lunch Program

By Allison Brenniese, San Diego, CA (mom to Tyler, age 8, late diagnosed classical PKU)

I wanted to share our experience with the U.S. National School Lunch Program. Please see the publication entitled Accommodating Children with Special Dietary Needs in the School Nutrition Program (PDF format) for the exact wording of the mandate for school lunch programs to provide for the needs of our children with PKU.

The Federal Code is:

For many years I sent my child to school with his low-protein lunch packed with love at home. In August 2002, I finally decided to try my luck having the school lunch program take some of the pressure off me, to ensure that my child1s dietary needs were met.

Federal law requires that schools shall make substitutions in foods listed in the Federal Code noted above, in the section for students who are considered to have a "disability" under 7 CFR, part 15b, and whose disability restricts their diet. PKU qualifies as a "disability" in the definition given here.

As a person who advocates for children who receive special education services, I felt that it time to blaze a trail for those students with special dietary needs in my school district. I felt that the law was behind me and it was appropriate for my child to be able to stand in the lunch line with his peers and be able to purchase a meal, one that allowed him to eat every item on the tray.

Knowing of the discouraging track record that our District had in complying with the special needs of our students, this was a giant risk to take. I was so afraid that this would be an area that would be a bungling nightmare. Think of all the things that the diet entails: accurate measurements, documentation of intake, and the expense! I sometimes wondered why I thought I should put my child's diet in the hands of people that I honestly didn't trust, but decided to forge ahead to see what I could accomplish.

Now, late in January 2003, I cannot give enough positive feedback about how well the school district responded to Tyler1s dietary needs. We sent the district dietitian a letter documenting Tyler's need for the PKU diet, detailing the foods he should have, describing how much phe we would be targeting at lunch time, and a providing a prescription for the low-protein foods. After receiving the letter, the district went straight to work contacting Cambrooke Foods to order low-protein items. With Cambrooke's consultation, the district prepared a 2 week rotating menu, each meal containing the targeted amount of phe for lunch. With direction from the clinic dietician, the district purchased a digital scale so they could accurately measure Tyler's food.

After one mistake of giving him a high phe food, the district staff agreed that only one person should be in charge of Tyler's diet. They trained that person to prepare his food and gave her a basic understanding of why things had to be so strict. They created a daily take-home chart to give gram weights of the food prepared and the amount Tyler has eaten, so that I can document his exact phe intake for lunch.

Eating has always been a huge issue for Tyler due to his late diagnosis of PKU at age 3 1/2 years. Introducing new food is still difficult, even after all of these years. However, this partnership with the lunch program has opened up so many doors for him. The range of foods he will accept is widening and I have been relieved of a third of the daily pressure on me to meet his dietary needs.

I am so excited that this worked for us. Students who require a low-protein diet will not have to iron out as many bumps in the road as we did. It is not very often that I have reason to praise the District, but my hat is off to them on this one.

This is what Tyler's menu looks like. Of course you would modify yours to be whatever your target phe amount is (ours is around 100 mg phe).

Note: in the menu, and asterisk* is a low protein item from Cambrooke Foods. I have a copy of exactly what each sandwich has on it (i.e. lettuce, tomato) but have shortened the list so you see the main idea in his menu plan.

Rotating 2 Week Menu

I think my only tips to other families are these:

• I think it is important THAT ONE CAFETERIA PERSON be in charge of the food, and that the same ONE CAFETERIA PERSON weighs the food before it is eaten and after (if the child doesn't eat everything).
• It makes it much easier if the weights are written down in a diet log that travels between home and school so that the family knows what the child ate and how much phe is left.

I hope that this information will be helpful to other families.