Avatar of Kathrin


June 16, 2010 in Uncategorized

Hi there I'm struggling again, it feels like I always come to the same point, it's so annoying, and once I'm in, it's so hard to get back to a good diet. Last blood level was 11 and to my satisfaction, but I guess now it'll be much higher (which is normal when forgetting formula once a day and having normal pasta :( Can anybody help? Any advise, any tips? I NEED motivation :( Why is it so hard??? Kate

4 Reviews of Again…

  1. Registered: Jun 15, 2010

    Posts: 0

    westtown, New York

    hi kate, i have not made my first appointment as of yet. how ever i also am struggling with eating. and what helps me to remember things is whith meals,medicine and formula is having a food journial i went on line
    and i got a packet of stuff about pku and i have been logging my meals,medicine and snacks sincemay 22,2010. and it realy does help.mabey you can give it a try mabey it will help you too.

  2. Registered: Jun 17, 2010

    Posts: 0

    Lk.Ariel, Pennsylvania

    this is my first blog…as I have just joined the PKU I have a son who is 49 yrs he is the one writtien up in all the medical Journals…Im asking u not to give up…Yes its frustrating..but as a retired Chef myself. (female)….I know how hard it is…I watched my son struggle for many years…but the most important advise I can tell u is please, please stay on your diet but BUT……dont make it a chore…try to make it less stressful for if u dont do it one day..or one meal..OK>>..not a crime….just try to get back on it again ASAP…if u make it a punishment for yourself..U will hate it…an u…dont do that to yourself..Its like being over have to do one day at a time…one meal at a time…an cheating once in a while wont kill u….but only once in a while…its hard…but you will reap the benefits later on in life…My son is now in a group home..because for many years he went off the diet…rebelled….all that kid stuff…but u have to under stand its not going to be easy..but u can do it..If u make it a routine…not a job..chore……..You know this will keep you well…..your brain is the most important part of your body… you must keep that happy…Its not easy but try…your life will be happy,,,,,,your feelings will be good…but try not to make it so hard…figure its like doing your hair….one day it s awsome…the next oh no….but we all know we have more awsome days for our hair.then bad…so you will win..I promise you …….Just look at it in a different way…..use something else in your life you like doing..your nails….what ever it takes……an not like taking out the garbage like eveyone hates an it will change your whole outlook…ok….Best of luck..hope that helps…..if u need more motivation blog me back..I will try more….G L young lady……


  3. Registered: May 11, 2010

    Posts: 0


    Just believe in yourself and have the protein in small amounts, and then not have any, but be aware that it is all about you feeling good!

  4. Registered: Jun 21, 2010

    Posts: 0

    Warren, Michigan

    Imho its probably more important to just keep drinking your formula. Once you get into the habit of doing that when you’re hungry, not eating high protien food will be easier I would think.

Add Comment Register


Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....


Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional