PKU.com Community Discussion Forum That’s PKU life! just abit confused …

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #9555

    Hi i was just wondering if someone could give me some advice,
    ,
    My little one (nearly 6weeks old) has classical PKU, and he has to have a certain amount of normal milk formula as well as his PKU formula (to see how much PHE he can tolerate), he started off with 10oz of normal formula, and his bloods came back and his PHE levels had dropped from 1970 to 34! So his formula was upped to 13oz, his bloods then came back at 80. So again they've been upped to 18oz.

    Im just abit confused as its gone down so quick, and not going up that quick :/ and if he has classical PKU wouldn't it be higher? Im just confused why its still so low. Could there be anything wrong?

    Or is this normal?

    x

    #9556
    Avatar of Apostolia
    foufouka
    Member

    One of the first things I remember is me saying: they got the wrong diagnosis, my daughter is fine with all the regular formula she's drinking  (every meal 4 reg/1 pku)…. idon't know why it happens. maybe it has to do with their metabolism as they grow up so fast at this age… But I ;m sure everything is fine. DO not be scared with levels like that, since here in Greece, and from what I know in Germany to, accepted levels are >1.2, that would be your 80…. Our doctor was strict, so my  daughter during the first year was always between 1.2-2..( multiply with 60 for your levels). And she's now at the 95th percentile of hight, 80th of weight. She grew up fine and so will be your son.

    #9557
    Avatar of Apostolia
    foufouka
    Member

    One of the first things I remember is me saying: they got the wrong diagnosis, my daughter is fine with all the regular formula she's drinking  (every meal 4 reg/1 pku)…. idon't know why it happens. maybe it has to do with their metabolism as they grow up so fast at this age… But I ;m sure everything is fine. DO not be scared with levels like that, since here in Greece, and from what I know in Germany to, accepted levels are >1.2, that would be your 80…. Our doctor was strict, so my  daughter during the first year was always between 1.2-2..( multiply with 60 for your levels). And she's now at the 95th percentile of hight, 80th of weight. She grew up fine and so will be your son.

    #9558
    Avatar of Breanna
    BreaMarie91
    Member

    Your sons levels probably dropped so quickly, because 10 oz of baby formula is a lot less than what he was most likely drinking prior to being diagnosed. I could be wrong, but it could be that 18 oz of baby formula is even small in comparison to what he was drinking when he was first born, and this might be why it is taking so long for his levels to rise. On the plus side the more regular formula he is able to have before his levels get too high, this means the more protein he will most likely be able to eat as he grows up.

    #9559

    My son is 8 months old. I remember during the first several months it seemed like his levels were very unstable. The doctor, dietitian, and other PKU parents all told me that it was very common. When levels are very high they will be given more of the PKU formula to quickly drop it, knowing that once it drops they will begin slowly decreasing the amount of PKU formula. They want to drop it quickly when levels are in the 1000 range so that the levels don't stay there for long. However, they want to raise the levels slowly so that they avoid having them spike. Babies go through a ton of growth spurts (when they utilize more phe) and go through periods of eatting less, or more. That is why babies get blood tests done so frequently.

    We have moved twice in the last 8 months and have had three different dietitians in three different states. Each has been very willing to help me understand the methods behind what they are doing. Don't be afraid to ask your dietitian any questions like this that you have. Pick their brains! You will be glad you did.

    Best of luck!

    #9754

     Thanks everyone! Sorry I've just seen these replies! Xx

    #9783
    Avatar of Shawn
    Shawny
    Member

    My 3 month old is classical Pku as well and her level bounces as well, her dietician says that it will continue to bounce as she grows. my daughters sometimes range from the upper 800s to as low as 6. Their little bodies take in all of the nuetrients that we are feeding them and using it to grow.

Viewing 7 posts - 1 through 7 (of 7 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