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May 7, 2010 in Uncategorized

Hi everyone, I am currently a primary/ elementary teaching student. I have been requested to research into PKU and how the education system can make a better effort at including and providing for the needs of children with PKU. I would greatly appreciate if anyone could get back to me about if there was anything that your school either did or could have done to help you, or someone you know with PKU to make learning more accessible? Thank you for your time Holly Eves

4 Reviews of Education

  1. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    Hi, Holly. I don’t have a whole bunch to offer, i don’t think. I was always on the PKU diet and was always above average when it came to grades, etc. I was in gifted classes, etc. When it came to education, there were no special needs I can think of when it came to PKU. I know that there is a high incidence of ADHD among PKU children, so that may apply. My main issue when I was in school didn’t come to academics, my struggles were more along the lines of when we had a birthday in my class and the child’s family sent in cupcakes/snacks that I couldn’t eat. Lunchtime was not fun, either, as I was always eating my special lunch of not-so wonderful food and never got to go through the hot lunch line (my mom could have addressed this issue with the school, but I was somewhat shy and insisted I’d rather take my own lunch than make a big deal about it and get all of the attention). So PKU-wise, the social aspect was probably more of an issue than learning. If you have any other questions that maybe I’m not thinking about, please feel free to contact me.


  2. Registered: Jun 27, 2009

    Posts: 0

    , New York

    Hi Holly
    Thanks so much for joining this site and taking such a pro-active role as a teacher trying to help our children. I have a nine year old daughter with PKU and we have had mixed experiences in the school setting in relation to the diet. It has all been dependent upon the teacher and his/her willingness to work with us so that Molly has not felt left out of social situations. The older she gets, the greater her desire to just fit in and not feel different so the teacher’s role in this is crucial. Advanced notification of parties and any food related activities is essential. Each family handles it differently, but we like to provide a match for Molly so she does not get unwanted attention from her peers. We ask that we are given two days notice so that we find time to make the appropriate snack – sometimes teachers were wonderful with this, others not so much. Some took the role as liason between me and other parents, others handed me the birthday list and left it to me to get the information (either way was fine by me). Last minute parties are a big deal because the diet is not just a yes/no list of foods. It is more of a very intense Weight Watcher’s point system for protein – it needs to balance out at the end of the day. So while Molly might be able to have French Fries (a relatively high in phe food) one day, another she might not have enough phe for it. School lunch has been a problem that I have yet to resolve,but I am working on it.

    The statistics are rather staggering about lack of dietary adherence (80% of people with PKU above the age of 14 do not maintain appropriate blood phe levels). Social pressures are one of the reasons it is so difficult – the role the school plays is crucial. A little bit of consideration on the teacher’s part can help reduce the negative social impact that this highly restrictive diet places on our children.

    In terms of classroom performance and the impact PKU has on it – that varies depending upon the individual child. Molly is extremely bright, but when her levels are high (caused by illness or taking food that is too high in phe) she gets terrible headaches and has greater difficulty concentrating (in math in particular). She misses more school that your average child due to the greater impact illness has on a child with PKU and frequent doctor visits. There is a wonderful lecture on the National PKU Alliance website by Susan Waisbren (a psychologist) who discusses the executuve functioning difficulties that people with PKU are at higher risk for having. (

    I have a handout that I always give to Molly’s teachers at the beginning of the school year. While it has been written for Molly’s individual needs, I would be happy to share it with you. Feel free to drop me a personal message with your e-mail address and I will forward it on.

    Thanks again,

  3. Registered: Dec 2, 2009

    Posts: 0

    Phelan, California

    Hi Holly,
    When I was in school my mom would always go in before school would start for the year and talk with my teacher. I would have to agree with the ladies below that most if the time it’s the social situations that can be difficult for kids to handle. For birthdays my mom would have a party bag for me that she would give to the teacher to keep in case of birthdays that she was not informed about. It would be filled with snacks that would last (rice crispy treats, fruit snacks ect) for the most part my mom would bring something special for me but on those days when birthdays pop up she didn’t want me to be left out.

    As for school lunches when I was younger my mom would make my lunch but at lunch is the hardest time for kids with pku. You see it’s very hard for kids of that age to understand why someone is different and most of the time it seems that we are made fun of for being different. Not only for the other kids but the child with pku my have a hard time understanding why the are “different” I know I did my two sister didn’t have pku so I couldn’t understand why I had to be so different. I know for my self that was something I had to deal with I don’t think I ever told that teacher in fear of brining more attention to my diet. Over the years I have come to terms with my PKU with the support of my family but it’s important for teachers to keep this in mind. In middle school I started eating lunch at school which in turn lead me to going off my diet to try and fit in be “normal.” I truly regret doing that but I am back on track so live and learn. Schools should offer more low pro friendly food for kids with PKU it can be difficult but if you get together with the parents they will be able to assist with a meal plan for the child.

    When it comes to the learning process I agree that when my levels are high I have a harder time grasping the material I am trying to learn. When my levels are high or when I do not drink my formula I am also moody I tend to get frustrated easily. Most of my teachers were good about taking the extra time with my but that is something teachers should be aware of when teaching a child with PKU. The formula is another issue I had to take mine to school which again made me “different” and to top it off our formula is not the best smelling. I would keep it by my desk but if it spilt all the kids would wonder what that smell was and would make a huge fuss over it. So, as a teacher you could offer to store it some where and let the child have access to the area it’s stored in, this would eliminate the issue of spilling and the child might feel more “normal” not having their formula with them all day.

    Thank you for taking time to learn more about PKU :)

  4. Registered: May 10, 2010

    Posts: 0

    Rochester Hills, Michigan

    Hi Everyone! I have a daughter, Veronica. She is going to be turning 15 yrs soon and has PKU. Ever since the 4th grade we have had problems with her sticking to the diet. As a result, her phe levels are usually 13-18. The most difficult part is that she doesn’t like many of the lo-pro food choices. And she won’t eat in public. Then she gets home and gorges herself. She isn’t doing very well academically either. Veronica is very extroverted and loves to indulge in the opportunity for social-social-social! I agree that there is definitely a social issue and pku with teens. Veronica doesn’t want anyone to know she has pku. And, whether I do the diet for her or she does, she still manages to cheat somewhere. We argue now all the time. My husband and I just want the best for her. Yep, she has also been to counseling tons. And if that isn’t enough, We also adopted Veronica from Poland as an infant. Lots of issues. How can you get your teen to get on the right track here? I am power struggling with her daily and she won’t even listen to us anymore. It seems that all we do is bring up the diet and academic issues and prevent social allowances until she complies. Urgh….! The pku clinic here in Detroit doesn’t really offer much other then understanding. The clinic did suggest to put her in the hospital until her levels got down and a pyschologist meet with her one-on-one daily. I am seriously considering it.

    Thanks to all, Karen sobolewski

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