Community Discussion Forum Parent support PKU – numbers and such and lots and lots of questions

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #8764
    Avatar of carrie

     My daughter was diagnosed with pku three weeks ago. And it seems we are working off of a different number scale. Her initial number at 3 days her number was 377 but of course we didn't know at the time and continued nursing until day 7 when her number was 1100. We stopped nursing entirely and put her on the special formula to decrease her numbers and after 18 hours they were down to 770 and we went another 18 hours on the fast where she could only have the special pku formula to get them low enough to be in range.

    Her range is 120-360 which is supposidly the suggested range for infants. 

    At first i was told i could give her two bottles then every third feed could be a nursing session. Then we moved it to every second feed, then we moved it to only two nursing sessions per 24 hours and 6 bottles and now we're up to two nursing sessions (one morning and one evening) and then one mini session (mid afternoon). 

    I'm finding this very difficult. Emotionally i'm struggling to accept this pku business but i'm also struggling to figure out how much she is getting each nursing session. for a while i had a scale to figure out how much she was nursing to figure out how much she could get – about 7 ounces per day of breast milk…….so we'll likely go to expressed breast milk b/c right now i'm trying to figure out how many minutes of nursing she can have each day and that is also stressing me out. every day we seem to be changing something and i just don't understand why we don't seem to have a special equation to figure out how much formula or how much breast milk is needed based on her numbers. 


    Avatar of Breanna

    Congratulations on your new baby girl. My name is Breanna. I am eighteen, and like your daughter I have PKU. I can imagine you are probably going through some difficult emotions at the moment, but I reassure you in the end everything will work out.

    A lot of PKU treatment involves guess and check. There is no simple equation to determine how much breast milk your daughter needs, because everyone with PKU is different. Some people are able to tolerate a lot of phenylalanine while others cannot tolerate much. Eventually as time goes on you will be able to get a better idea of how much phenylalanine she can have, and it will not be as much guessing involved.

    As far as her phe levels go the measurments that your doctor is using are ummol/L. Some people us mg/dl in which case phe levels need to be between 2-6 mg/dl (to convert from mg/dl to ummol/L you simply multiply by 60).
    If you need anything else please feel free to let me know.

    Avatar of Katie

    Congrats on your new baby!  My name is Katie and I am 25 with PKU.  Unfortunately, like Breanna said, it is a lot of experimenting to find out exactly how much phe a PKUer can tolerate.  I can assure you that your daughter will be fine as long as she eats the right foods.  Often times clinics over-emphasize how BAD pku can be… there are alot of people on this website that can prove to you that PKU is completely manageable!  If you should need ANYTHING at all, please do not hesitate to ask :)  I would love to help in any way I can… and try to enjoy your little one despite learning all about the PKU — they grow up quick!!

    Avatar of Grace

    congrats again on your little baby girl…about a year ago i want in your exact shoes as with alot of other on this site…my son i now 11 months old he has CPKU, we went through the same thing you are with the nursing a few feeds a day and it was so hard we never knew how much he was really getting and his levels were allways doing a yo-yo, I soon had to start expressing and giving him the breastmilk in the bottle. It will get better it is true it may take a while, and there will still be those really hard days but what is really important it that your baby is ok and she can grow up to be a healthy, smart, active child, my son is 11 months and doing great developmentally, he is walking and blabbering all over the place.

     I am not gonna tell you that the diet gets easier, because i am not really at that point yet, we still have a hard time getting him to eat the right amount of phe and calories but we are doing it. you can do it and hang in there once. And most of all enjoy that little baby…they are soo much fun!!! let me know also if you need help. this site is great and helped me a ton after nate was born.

    Avatar of Cook4Love

    Congratulations on your baby!  Know this — the first few months are the hardest.  You are trying to get over the shock and figure out how to manage the diet, all while overwhelmed and exhausted.  I pumped for Molly when she was a baby, so that I knew exactly how much phe she was getting.  We added it to her formula so that she was getting the same drink each time and would not show a preference, and it also distributed her phe evenly throughout the day.  Levels still went up and down as the doctor and nutritionist tried to figure out what her individual phe tolerance was.  Once that was figured out, things went easier until we hit growth spurts and needed to adjust her phe intake.  I pumped for a year for Molly.  There was good and bad with that.  On a plus, we knew exactly how much she was getting and could adjust her phe easily by adding more/less to her drink, she did not have a preference of formula over breast milk since we mixed it together.  The negative was the emotional toll it took on me.  To find the time to pump and feed and to try to maintain milk supply was very difficult when I was bawling every time I turned on the machine, exhausted and not taking care of myself.  When I was pregnant with my son, I decided if he had PKU I would breast feed him because pumping soley was too hard for me.  It is a personal decision that you need to work your way through.  All I wanted was to know that Molly was gong to be ok.  I wanted to fast forward to her being 5, see that she was fine, rewind and enjoy her instead of worrying so much.  Molly is more than ok, she is wonderful.  PKU never gets easy, but it does get a lot easier.  Attached is a link to a video to Molly (now 9) – while I know it is not the same as seeing your daughter, perhaps it will ease your mind a little.
    When you are ready for foods, check out my non-for-profit Cook for Love.  It is a culinary website devoted to low protein cooking .
    Good Luck,

Viewing 5 posts - 1 through 5 (of 5 total)
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