PKU.com Community Discussion Forum New to PKU.com high levels

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  • #6107
    Avatar of charlotte
    charlottek
    Member

    hi have just come from another meeting with my daughter megans consultant and dietician, to recieve the news of yet more high blood levels, they have been moderatley high for many months and am worried of the effect this will have on her future development. She is 8 years old and has become extremeley sneeky with certain counted foods like crisps and chocolate, does any one have any advice?

    #6108
    Avatar of Breanna
    BreaMarie91
    Member

    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

    #6113
    Avatar of charlotte
    charlottek
    Member

    hi have spoken to megan and she would like to talk to you and your sister if you don’t mind in doing so, we don’t know anyone else with the condition so it would be nice to talk to someone who knows first hand about pku, she also has, like yourself an extreme phobia of needles and she has to start doing her own bloods in the next few weeks so i think talking to you will help if you could let us know your e mail address thanks

    #6114
    Avatar of Breanna
    BreaMarie91
    Member

    Hi again! My email address is completeangel@ameritech.net you can just email me there anytime. I talked to Erica and she loves the idea!
    Erica does fine with blood tests and needles. Out of the two of us it’s just me with problems…but I have to admit I think I’m getting better at doing blood tests. It’ll be something that just takes alot of time and support. nBreanna

Viewing 4 posts - 1 through 4 (of 4 total)
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