PKU.com Community Discussion Forum New to PKU.com New to EVERYTHING with lots of newbie questions…

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  • #9486
    Avatar of Meg
    mumeg
    Member

    #9487
    Avatar of carrie
    clenk
    Member

     HI! My name is carrie. I'm a mamma of 3- and my youngest has classic pku (the most severe form) and has been treated from day 7. 

     

    I want to tell you that you really don't have anything to worry about in terms of your son's development. I've researched pku extensively in terms of research available in canada/usa and europe as well and those with hyper phe simply don't have the cognitive issues that those with classical pku (even treated) have to deal with. 

     

    What is most important for your son is consistency. Apparently higher numbers for hyper phe causes fewer issues than high fluctuating numbers – ideal fluctuations keep within 100 points/week. 

     

     

    In terms of your questions. 

    We in canada do the same numbers we follow a 120-360 scale for classical pku- and up to 600 for hyper phe. 

    If you have hyper phe it doesn't change- he might have a slight variation in his numbers over the first year or so but it won't change to classical pku (requires a different genetic mutation)

    Results can change day by day and show up within a day . We get tested once a week – more when she's really struggling. 

    #9489
    Avatar of Becky
    beckyboo
    Participant

    Hiya! I am in the UK & our levels are in the hundreds! I don't know what the units are called but they read umol/L for example, my last blood test level was 250umol/L

    In America, their levels ARE different, I was told that the calculation is ROUGHLY our levels divided by 66, so my last level would be 3.7 in American terms! 

    I wouldn't be able to tell you if the type of PKU could change as your little one gets older, as I'm no dietician, but I imagine you wouldn't know until you started introducing more foods and seeing how they effect the levels! If WA is a bit new to it, I could ask my dietician if she knows?!

    As clenk said, levels can change by the day! If things need to be changed, they can be implimented pretty quickly! I am currently 39 weeks pregnant and do a blood spot test 3 times a week! The levels (generally don't but) can change by 100umol/L in a week, that is when my dietician puts me up or down (more often up than down) in exchanges! 

    I hope this has helped a little bit?! Do feel free 2 message me if you have any more Qs! I will try my best to answer, if not I will try to find out! x x x 

    #9491
    Avatar of Tanya
    jakesmom
    Member

    Hi Mumeg,

    I too was you, not too long ago. Our son just turned a year. At birth he was classified as HyperPHE and we were told he wouldnt need diet. However, about the same age as your child, we found out he is Mild PKU, and does require diet.

    It was much more stressful then, then it is now. We are slowly learning and growing with him. The easy food, have to be more creative to achieve. The quick hot dogs and pasta, (a common lunch here — In Canada) won't ever be an option for Jacob, however, we are finding subsitutes. I now make his modified Lasagna and Shepards Pie like a pro!! I enjoy creating his modified foods. Granted, we are extremely lucky in Ontario, and coverage for food is wonderful compared to many other areas in the world.

    As Clenk said, we seem to measure the same way you do. Jacob, while on diet, seems to hover between 240 and 300. We have been reassured that he will not develop classical PKU which was a GIANT fear of mine seeing as he seemed to go from Hyper to Mild.

    I'm available if you ever want to email me. I used to live on this site, however, with upgrading my phone to a smart phone, its rare I get to the computer as often as I used to!! A message will alert me :) ><><I think><><

    Have a great day, this site is WONDERFUL. It was so helpful to us when we began Jacobs adventure!!

    Tanya

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