PKU.com Community Discussion Forum What’s the Phe? Levels of classic and mild pku

Viewing 15 posts - 1 through 15 (of 21 total)
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  • #7396
    Avatar of Monika
    monika26
    Member

    i have a two month old boy with pku however im confused becuase he was born with a level of 6 and then about a week later when we re-did the test it was a 24 so hes considered classic pku..my problem is ever since we got his levels down they havent gone up..every level comes back at 0.2 so its really low..could this mean he might have mild pku??

    #7402
    Avatar of Meaghan
    mayrogers13
    Member

    If you are doing a great job with diet and formula, his levels would be that low. I would suggest increasing his caloric intake (with PKU friendly foods) and see what happens. If you do that for a few months and nothing changes, ask the doctor to reevaluate him to see if he has mil PKU instead.

    #7403
    Avatar of Breanna
    BreaMarie91
    Member

    It might just be that he isn’t getting enough baby formula/breast milk. My sister was born on the 25th and she has PKU. Her level at birth was 8.4mg/dl and our doctor said she has Classical PKU, which makes sense because that’s what my other sister and I have. My mom got her levels down to 4.9mg/dl in two days, but that’s probably because she has done this twice before.
    I think wither a person has classical PKU or not is determined by their phe level from the newborn screening. nBreanna

    #7423
    Avatar of Monika
    monika26
    Member

    thanks for all the advice we finally got his level up..we increased his intake to about 350mg and his level went up to a 9 so now we dropped it to 325mg this will hopefully keep him in range

    #7686
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Monika, nSometimes its playing around with the formula intake till u can get that level that u are happy with.
    Don’t worry as the little one gets older it will become easier.
    Best Wishes, nTracie-PKU

    #7731
    Avatar of Monika
    monika26
    Member

    oh im devestated..we had dna testing done to help in letting us know what level Pku matthew has,,I finally got results yesterday and nothing..it wasnt informative enough to tell us. All we know is that it is PKU.So now we either do more testing or put Matthew on in patient to the hospital so that they can monitor when he eats and take blood right away to see what is going on and why his levels are really low one week and really high the next for no reason…any ideas on why that might be

    #7732
    Avatar of Breanna
    BreaMarie91
    Member

    Monika, I’m so sorry to hear you guys are having so much trouble with Matthew! I honestly have no idea why is levels would be going up and down so much. What is Bridget saying? nGood luck! I’m sure with times things will work out. nBreanna

    #7733
    Avatar of Monika
    monika26
    Member

    i havent talked to Bridget since we got results but before then she was just as confused as we were..like for example with no change in his diet one result came back at 8 and then two days later it was a 5… and thats where we are at right now..i hope it stays there for awhile and not like a week..

    #7918
    Avatar of Rachel
    rmbrewer12
    Member

    Our doctor at UNC Chapel Hill told us when our son was born that we would not know what type of case he has until he gets into his todler years. They said the important thing is to do our blood work regularly and we talk to our dietician weekly since we are always playing a catch up game with the levels. The important thing is that you be extremely strict with the diet and keep open communication with your clinic. A label really isnt a big thing.

    #8028
    Avatar of Kristen
    ktbmcb
    Member

    My son, Connor is around the same age as your little guy. We also had alot of trouble with his levels in the first couple of months. I was breastfeeding and supplementing with the Phenex. It took a little while to get everything under control. Our doctors and dietician told us since there was no way to measure how much breast milk he was getting and how much phe he was getting from the breast milk it was difficult to know. we got everything under control and then his levels were low for quite a while. I am finding out that teething, sickness can all play a factor in his levels. They have been around 2.3-3.0 for the last 2 months. We are diligent about keeping records of what he takes in and I donot breastfeed anymore. I didnot stop breastfeeding b/c of the levels but rather b/c I went back to work.

    #8030
    Avatar of Monika
    monika26
    Member

    Thanks for all the support and advice. Matthew is now 10 months old and his levels were in the right range for about 3 months and now they recently got back down to below 1. Docs think its just a growth spurt. I hope they are right because i sure dont want to be back to square one. Regarding how much he tolerates well he his at 237. I am very strict with his diet because of how his levels fluctuate i literally write everything down that he eats. Ive been doing that since the day we found out of his PKU. Hopefully one day i can be more relaxed

    #8121
    Avatar of Grace
    gracie1605
    Participant

    My son is now 5 weeks old and his levels have been low the MD told me is is the honeymoon period and i can find any info on this. I was also wondering why they want the levels at least 2. Is is because if they are less than 2 then he is not getting enough phe to grow properly if?

    #8127
    Avatar of Breanna
    BreaMarie91
    Member

    Gracie1605,
    Doctors want phe levels to be above 2 mg/dl to prevent deficiencies. Phenylalanine is an amino acid, or building block of protein which means it is found in protein. So when you restrict phe you are restricting protein as well. If you restrict it too much you can develope protein deficiencies.
    Of course it is important to remember this happens over a long period of time. Everyone who has PKU is going to have some low levels and high ones at one point or another. It is prolonged high/low levels that doctors worry about.
    Breanna

    #8501
    Avatar of medina
    medina2009
    Participant

    your problem is as the same as mine. first of all i never know anything about differences between classic and mild pku. I have 2months old baby that his phe continually goes ups and downs. one week is 12 and other week is ./4

    and I am so confused about it. our dietition is so bad-tempered and my husband and I decidede to change his regim on our opinion.please explain for me the differences between classic and mild pku?

    #8502
    Avatar of Breanna
    BreaMarie91
    Member

    Classical PKU is a more severe form of PKU. People with classical PKU cannot break down as much phe as someone with mild PKU (or Hyperphe). Because people who have classical PKU break down even less phe than people with mild PKU they are usually allowed less phe in their diet.

    ~Breanna

Viewing 15 posts - 1 through 15 (of 21 total)
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