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#6108
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BreaMarie91
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charlottek,
Specifically for the chips and chocolate, have you thought of trying to get some sort of substitute? Just in general low protein foods help alot, because then she can eat like everybody else but not go over her phe limit. For chips you could try apple chips or Yucca chips. You can usually buy these in most grocery stores. I can’t remember the phe in these but I know they’re very low. Also, Vitaflo has what is called Vitabites, it’s low protein chocolate. I believe you can order the Vitabites from http://www.vitaflousa.com.
Have you tried just talking to her? I guess that would be the first spot to start. Just try to explain to her how important her diet is, which I know sometimes probably isn’t easy since she’s alittle kid. When you go for appointments does your daughters doctor and dietitian talk directly to her? I know this helped me when I was little. If I felt like they weren’t confronting me specifically, then I felt that it wasn’t important. It wasn’t until my doctor, dietitian and genetic counselor began having conversations with me about my health that I started taking my diet serious.
If you could get a hold of the book “You and PKU” it would be a nice book for her to read. It is about 30 some pages and I believe you can get it from myspecialdiet.com. I read it as a child and it explains alot of things in terms that a child can understand.
One last suggestion is possibly trying to get her to talk to others. Weither this be online (but of course you would have to help/monitor this) or if there is a PKU organization in your state. I have an 8-year-old sister who also has PKU so if you want I could help her write to Megan. It’s up to you, but if you want to try this then I can just give you my email address and she could just type through your email and my sister can type through mine in return.
I hope this helps and I hope Megan’s levels go down! My sisters last level from this weekend was 8mg/dl, but I’m helping her get it down and we’re still waiting on my results. nBreanna n16 CPKU

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