Having Diet Troubles... Please Help

Having Diet Troubles… Please Help

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Having Diet Troubles… Please Help

August 3, 2009 in Uncategorized

My name is Callie, I'm 15 1/2 years old. I have classic PKU, my little sister also has classic PKU. I'm currently having problems keeping my phe level down, my most current level was 22. I'm hoping that I can find someone who can help me get through this and bring my levels down without a lot of pressure. If anyone has any ideas or suggestions that might help me I would greatly appreciate it. <3 Callie <3

18 Reviews of Having Diet Troubles… Please Help

  1. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    Hi Callie

    maybe step by step sort of thing.. .like begin with drinking formula each day ? and move on from there ?

    Andolyn
    49 cpku

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Callie.. def take this step by step… start with formula and then make a plan to eat low-pro foods maybe 3 days a week, then 4 and keep increasing (how often you want thats realistic for you) the amount of days you will follow the low-pro diet… this way, you can still eat some of the foods you really enjoy, but still feel self-fulfilled that you do have control and can get back into the swing with your diet… keep your head up : ) you will be ok!

  3. Registered: Jul 11, 2009

    Posts: 0

    , Ohio

    Thanks guys I think I will try that, maybe it will help. One of my biggest problems is that because there are two of us with pku in our house we can’t keep up with the orders of Low – Pro foods because of our money situation. But I do very much appriciate the ideas, and are open to any others you or someone else might have. <3 Callie <3

  4. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Have you discussed this with your clinic? Does your state cover any of your medical food (insurance wise)… I know some are good about this – but some are better about doing this…. check with your parents and ask them…. there might be something to help cover some of the expenses

  5. Registered: Jul 11, 2009

    Posts: 0

    , Ohio

    well right now we are getting food stamps. mom has been using those for her, my dads and my brothers food and the extra for low-pro food, but the price of the pasta just doubled, so i dont know but i will ask.

  6. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    What state are you in? Def have your parents find out what exactly state will cover.. for example, I live in NY… they cover $2,500 worth of medical food per year

  7. Registered: Jul 11, 2009

    Posts: 0

    , Ohio

    I’m in Ohio…. wow that is cool… maybe I need to move there… but my parents said they arnt moving again so I guess that wont work. I think I will ask them about that tonight, I kinda forgot last night. Its been kinda busy at our house.

  8. Registered: Jul 11, 2009

    Posts: 0

    , Ohio

    well guys my nutritionist should be calling tomorrow with my next phe level, wish me luck please.

  9. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    best of luck sweetie… hang in there – you can do it!

  10. Registered: Jul 11, 2009

    Posts: 0

    , Ohio

    thanks Katie…. no news yet but probably not until later.

  11. Registered: Aug 11, 2009

    Posts: 0

    , Utah

    Hi I’m new on this, ha ha but your blog thingy caught me eye.0.O
    I also have classic PKU and I’ve had levels as high as 27.x__X So i know what your going threw.
    Ummm what i would do is Lots of milk and find your fav low protine foods and just stick to those
    for a week and take your blood and it should be lower. xD I had to learn the hard way and got hospitalized
    for 2 months for having high levels and trust me its no fun lol. any ways i thought I’d give you some tips.
    ok bye!!

  12. Registered: Jul 11, 2009

    Posts: 0

    , Ohio

    Thanks pkugurl99, I’m kind of glad to know I am not the only one having trouble with my diet. Okay I do have one question though, you mentioned how I could bring my levels down do you have any suggestions on how to keep them down?

  13. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Callie.. I’m not sure if I have asked you this already… have you considered taking Kuvan, or have you tried it? I know you mentioned money is an issue since there are two of you with PKU, however BIOMARIN (the company who sells Kuvan) is very supportive and helps you with insurance… If you do not know what Kuvan is, let me know and I will give you a brief overview… it is a possible option if you are having trouble maintaining your low levels… and just to give you an early heads up.. Kuvan does not work for everyone… about 60% of patients are found to respond… also, I am posting information regarding state coverage for medical foods that we discussed earlier in this blog…

    and… how was your last result?

  14. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    I agree with Katie. Kuvan might be something that you could benefit from. If money is an issue, BPPS (Biomarin Patient and Physician Support) will work with you to help your family get the proper coverage. Maybe you should consider speak to your doctor or dietitian about this, but of course talk to your parents first! Good luck, and feel free to send me a message! ~Breanna Hardy 18 CPKU

  15. Registered: Jul 11, 2009

    Posts: 0

    , Ohio

    Yeah we have tried Kuvan and it didn’t work… I found a new formula… I’m now using the Camino Pro Packets (fruit punch)… I mix one with 20 oz. of fruit puch gatoraid in the morning and split it between breakfast and lunch and then i mix one after shool and another after dinner. But I mix those two with a carbonated drink, it helps with the taste… covers up the after taste. I want to run track this year but mom says i have to be doing better with my formula before practices start in late November… wich i guess is fair.

  16. Registered: Oct 26, 2009

    Posts: 0

    , Arkansas

    Okay girl…i got your back here…i know all about getting levels under control in a hurry. I am PKU as well and i have also had 2 KIDS..i was not on diet when i got prego with those kids so i had to get my levels down in a hurry and they were higher than yours..not much but a little bit but i got them down in a week. If you want, send me a message..friend request me and i can give you some ideas to ask your doc and trust me..there are some that you can do that will let you limit back how much formula you have to drink. I am 28 years old, PKU and have two kids..THEY ARE FINE and no problems and on top of that i have some REALLY GREAT RECIPES for ya if you want some..cause the pku diet can get REALLY boring with the same old food each and every day…so hit me up

  17. Registered: Oct 26, 2009

    Posts: 0

    , Arkansas

    Oh and the recipes i have you can get at a grocery store…and i get them out of some cookbooks i own and have owned since i was a baby..i have like 3 cookbooks…lol!!! My stuff can be bought at pretty much any grocery store and omg..i have stuff for sweets, soups, breads, etc.

  18. Registered: May 27, 2009

    Posts: 0

    , Florida

    How are you doing now Callie? I read this and am wondering if things have improved? I am about to begin a new diet after being off for a very long time. Try to use PKU.com as a resource- maybe have your family sign up as well… My wife just signed up and should be learning a lot from people with PKU and their families. It is a major challenge, but you can do it!

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