Community Discussion Forum Parent support Section 504 Plan or IEP at School for PKU

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    Avatar of kathy

    We are in the process of trying get PKU accommodations for our daughter in school. We were hoping that some of you may have experience with this. Does anyone have a Section 504 or IEP for PKU implemented in their school or school sytem? If so, we would love to hear from you. Perhaps we could borrow some ideas for our daughter’s accommodations.

    Avatar of Sarah

    Hi, nMy son isn’t even a year old yet so I have no personal experience but I read this article and thought it might help you.

    Avatar of Breanna

    Hi I’m only 15 and don’t know exactly about this but I know my mother has said many times that all states (atleast I think all states) are required to provide personal lunchs for children with PKU.

    Avatar of rebecca

    Im new to this site so I don’t fully understand how it works but I have a 7 yr old with classic pku. He is in public school and the school has accomodated his diet by verbal agreement. I met with the dietician and we made a two week rotating menu and they supply everything on it except the formula. I haven’t had to write up a 504 yet thankfully. Too many papers! If we need changes I just modify and send them changes. It was a struggle to get them to understand everything. I think the less they know the better. Just let them know the basics of the diet. The ladies in the cafeteria get confused if I try to explain in depth so I just say do it this way…
    I dont know if this helps but it works for us.

    Avatar of Tracie

    Hi there, nProbably the first thing you would want to do is et a CHILD ADVOCATE. nThey will know exactly what to request off of the school.IE: Lunches,Classes or even learning programs.
    This is all free to the parents. nThe CHILD ADVOCATE is like your childs voice,and NO-ONE will take advantage of him or her.
    I hope i was helpful?
    Best Wishes, nTracie-PKU

Viewing 5 posts - 1 through 5 (of 5 total)
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