PKU.com Community Discussion Forum Parent support increasing phe with increasing age

Viewing 9 posts - 1 through 9 (of 9 total)
  • Author
    Posts
  • #8740
    Avatar of medina
    medina2009
    Participant

    my son is now 8 months old . I and my husband decided to control his regim ourselves . because when we do the orders of dietition , his phe continually goes up and down . so we let him to eat  15 bushel regular milk and 9 bushelformula (comida A ) . till 4 months his phe was normal and after that his phe goes up. then we devide milk 50-50, 12 bushel regular milk and 12 bushel comida A . during 4 months his phe was normal and now his phe was 9 . and again we change his regim to 15 comida and 9 regular. So we conclude that every 4 months his body's need to protein is less than before . So I am so worry , if he reaches to 3 years old , then he cant eat anything .

    #8749
    Avatar of Ning
    niuniu
    Member

    Dear Medina,

    I'm with the same problem! My girl will be 11 months in a few days. Her tolerance raised from 180-200 mg/day in her 6th month to 230-250 mg in her 8th month. When we were expencting higher tolerance and more normal food for her,  her phe was up to 7 continuously a month ago. Now we have adjusted to 180mg, 50mg less!  Our doctors said it happens on some babies that tolerance gets lower sometimes in their growth. 

    It's said the artificial enzyme for CPKU will come out in a couple of years…So, just give a little faith…..

    #8751
    Avatar of Breanna
    BreaMarie91
    Member

    I have to agree with Niuniu. Phe tolerance changes a little bit throughout life, because so many factors can affect phe tolerance (ie growth spurts, activity level, etc). Your son is still very little, so he will be going through a lot of growth spurts in the near future which means his phe tolerance will change somewhat here and there.

    When I was younger my phe tolerance was 300 mg of phe, however at one point due to a growth spurt my tolerance was increased to nearly 420 mg of phe for a few months. When I was done growing my tolerance was brought back down to 300 mg of phe. I haven't heard of a case where someone was suddenly not able to tolerate any phe at all.

    Take care,

    Breanna

    #8753
    Avatar of Ning
    niuniu
    Member

    Thanks Breanna. Could I know when your peak tolerance, ie 420 happened to you?

    #8755
    Avatar of Breanna
    BreaMarie91
    Member

    If I remember correctly I was about ten years old. My phe levels had dropped drastically, so to bring them back to the 2-6 mg/dl range my dietitian increased my phe intake. I was kept at 420 mg of phe for a few months before my tolerance went back to normal.

    #8778
    Avatar of medina
    medina2009
    Participant

    thank you so much . you mean the tolerance of pku people may change . but my son tolerance decrease more and

    more . and I am so worry about that .

    #8781
    Avatar of Cook4Love
    Cook4Love
    Member

    Hi Medina
    When Molly was around 8 months her blood phe level was high (no sickness).  We lowered her phe intake and they were high again.  We again lowered phe intake.  Like you we were getting very worried — why would her tolerance decrease.  It ended up that she was not getting enough calories or phe and was becoming mildly catabolic (where the body breaks down muscle and causes the levels to go up since the muscle is made up of protein).  We upped her special formula for more calories and ended up increasing her phe tolerance.  Her came down quickly.  Up to that point we did not understand the importance of calories.
    Good Luck!
    Brenda
    http://www.cookforlove.org

    #8786
    Avatar of Meaghan
    mayrogers13
    Member

    Hi everyone,

    I want to imform you that even though your son may have to live with a low tolerance, it isn't really yhat bad. I am the most sever case of PKU that I have run across so far. My phe allowance is 225mg a day, or the equivalent of only 5 grams of protein, and I am 21 years old. I have not had a single level over 5 since I was in middle school (about age 13). It is tough, meaning going out with friends and really having to remind yourself that you can't snack as much as they can, but it isn't bad at all. Especially with all of the foods from places like Camrbrooke and recipes from sites like Cook4love, living with a low tolerance isn't hard at all.

    Meaghan

    #8787
    Avatar of medina
    medina2009
    Participant

    thanks a lot . again yesterday we test him for phe . although we decrease his regular milk , but his phe was 8.4 mg/dl

    again and again we should reduce his regular milk .

Viewing 9 posts - 1 through 9 (of 9 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