Viewing 6 posts - 1 through 6 (of 6 total)
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    Avatar of Kelly

    Hi there. My son was born in Dec 08 and has PKU. He is the first and only person in our family to have PKU so this is a true learning experience. I am wondering for all you moms out there who have a child with PKU and no one else has it, how do you manage with the explaination of the diet to your child. I know I am getting way ahead of myself but I just think about the future. I think thiings like what do you do at Thanksgiving when everyone is eatting turkey or Christmas when everyone is eating ham? What about Halloween and all that candy?? How do all of you adjust their lives so that they feel like everyone other child out there??? Just have so many thoughts and want the best normal life for my son so he doesn’t feel “different”, even though he is perfect in everyway?? Any thoughts, comments, concerns would be greatly appreciate and any advice for this new mom who is embarking into a new adventure!! Thanks to all! Kelly[/COLOR][/SIZE]

    Avatar of Rachel

    I have been in your shoes! I had the same questions when my son was diagnosed. He will be 1 year old May 17th. They have all kinds of recipies that will help with holidays, I don’t know if you know about the National PKU News website ( but they have a wealth of information. Also, the my special diet website ( has cookbooks you can buy and they are really great about having things to make for your child on holidays. As for Halloween we have decided to have our family and friends give my son fruit instead of candy. My biggest issue was just getting it through my head that my son would do things differently than most children but that doesn’t mean that it doesn’t have to be just as special and even completely normal to him. For his birthday I took some cake decorating classes so that I could make his “special” cake and then be able to decorate it. I hope your child is doing well. It takes a long time to process all of this!
    God Bless nRachel

    Avatar of Kelly

    Thank you for your input. Thats a great idea to go to a cake decorating class!!!! Good luck trying it out for the first time in a week or so–how exciting!!!!!!!!!!!!!! Any recommendations on which books are the bests for recipes??? Enjoy your sons first birthday!!!!

    Avatar of Tracie

    Hello, nMy name is Tracie,and i have PKU,and my mom had to do the same with my 3 sisters who don’t have PKU. nMajority of the time it goes on how severe the PKU is.As for myself i was considered borderline PKU. nFor example at holiday time; i would eat the potatoes Green beans,and some cranberry sauce. nMy mom would also make a nice big salad. nMy sisters never really asked about why i ate that way;they were just use to it.Its how i was raised just like them.
    If anything i feel more healthier then my sisters,cause of my veggie diet.I just call myself a Vegan,and that alone is pretty self explantory. nAlso if the kids do start asking just always keep it open,and start young.
    For your child it will be like second nature;as well as for the siblings.
    Remember Knowledge Is Power. nYour whole family will do fine Just learning.
    Any questions please feel free to ask.

    Avatar of Kristi

    We have a 2 yr. old that is the only child with PKU in our family and it is getting a little harder now that she’s getting older and wants what her sister and cousin are eating (old enough to have an opinion but not old enough to be able to explain to her why she can’t have it). We sometimes try to give her stuff that is very similar to what they are eating (like the low pro pasta and mac and cheese). And it’s lucky for us that her sister is a big fan of fruits and veggies too. For Thanksgiving, most of the foods are vegetables anyway besides the turkey and dressing. And for Halloween, there are a lof of candies that are “free” foods or very low b/c they’re mostly sugar. So that hasn’t been an issue for us yet. The biggest problem for us is coming up with a variety for Ashley since the low prow foods are so expensive and we can’t always afford them. Any suggestions about that? –Kristi

    Avatar of Kelly

    Kristi, I havent had to cross that bridge yet with the special free foods yet. Where I live a grocery store is carrying some products so I have told my family and friends if they are in the gift getting mood or for birthday or whatever they can get us gift cards to that store so we can use the money that way. It is a few hours away from us but i think we will be going there to get things to stock up in the future. Also if you have a flexible spending account or insurance see if they will reimburse you for the “special medical food” or give you an allowance towards it per year. I guess alot dont offer it but we are going to try it once that time comes around!! Thanks for the comments

Viewing 6 posts - 1 through 6 (of 6 total)
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