Community Discussion Forum Adults and PKU Looking for Support…

Viewing 2 posts - 1 through 2 (of 2 total)
  • Author
  • #9528
    Avatar of Keith

    I have been off diet for some time now probably about half my life. I do have some side effects but not as severe as they could be.

    I am 28 will be turning 29 this year on October the 29th (Golden Birthday Baby!!!!) and I now have a job that will provide insurance to help pay for my formula and food which when it does I will then start to go and be on my diet. I want to be able to be healthy from now on as I created a new life after my mother had passed away last year (Love you Mom). She always wanted me to live life like everyone else instead of taking care of her day after day. I did not mind taking care of her and became guardian of her when I was 24 even though I had older siblings. So for about 3 and a half years I was takign care of her and it was the hardest time of my life when she passed away. I vowed to her to live my life now which I have been doing. I moved away from the town I grew up in and now live with my brother up north. Got a new job and a new life which means I am resetting my clock and doing it all over again just for her. She was my PKU hero because of the fact that she was the only one who understood who I was even with PKU. The rest of my family doesnt fully understand and sometimes I feel like they do not care enough to understand how I feel.

    So pretty much I am looking for support anywhere I can get it so that I do not feel as depressed every day now. The hardest thing that I will have to do I think is to go back on the diet and eat their food and drink their formula. I did however find a great milk that is good and low protien… Almond milk tastes good and only has 1g of protien per serving and I only drink about four cups of it a day or not even that but it helps me drink my formula when I have it.


    Uncleteef (Keith)

    Avatar of christine

    I can undersand needing support.  It's a weird thing having PKU that a lot of people don't fully get.  I've been on the diet more or less my whole life.  At times, I'm a bit more liberal but always within a certain range.  I've never had meat, fish etc.  I just don't have any desire.  Recently, I've been more strict about being on my diet and making sure I have good levels.  Two things I would tell you to look into from my perspective.  First, try Lophlex as a formula.  I ALWAYS hated formula.  It was my one vice.  I could deal with not eating but the formula was the worst.  Lophlex is a pre-packaged formula kind of like a Capri Sun juice.  It is a lot easier to drink and tastes a lot better than many of the other formulas.  The tropical flavor actually tastes likes juice.  I don't like the berry but these are just personal preferences.  Definitely try it at least.  It makes life a lot easier. Second, see if you are a candidate for Kuvan which is pills that let you manage your diet a lot better.  I'm allowed around 15 grams a day and I've had really great levels.  Hope this helps. 

Viewing 2 posts - 1 through 2 (of 2 total)
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