PKU.com Community Discussion Forum New to PKU.com mild or classical ???

Viewing 15 posts - 1 through 15 (of 17 total)
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  • #4717

    what really is the difference between classical or mild??? what do you levels have to stay between and what do you or your child have to eat ? thanks, heather <3

    #4747
    Avatar of Breanna
    BreaMarie91
    Member

    I think their are 3 types of PKU. Classical PKU is one and I think another is hyperphe (if I’m wrong anyone can feel free to correct me as I’m only 15 and going off of what my dietian has said). Basically I’m pretty sure the types are PKU are just based on how much phenlalanie your body can handle, or how much phe intake you have. And some doctors tell you your levels are okay if their under 10 and some doctors have their own different opinion but it’s been found that your best if your levels are between 2 and 6. nBreanna

    #4751

    okay thanks !

    #4752

    its crazy what a 15 yr old can really know .

    #4753

    not to affend you or anything i am just saying you know a lot !!!!!!

    #4772
    Avatar of Breanna
    BreaMarie91
    Member

    Lol yeah but I guess when I’ve lived with PKU all my life and I help alot with my younger sister’s diet when my mom is at work (my dad isn’t good with helping with the diet) you learn alot. Plus I have my dietian to help educate me. Alsoin 9th grade we did projects on genetic disorders and I thought it would be a good time to really start to find more about PKU since even then I wasn’t a pro on PKU and I’m sure even now there is more I could learn. But it’s really funning sometimes to try to explain it to my friends, sometimes it’s like I’m speaking in a different language to them, but that’s okay because in the end they alteast have a handful of informantion and know the basics about what PKU is. nBreanna

    #6104
    Avatar of Meaghan
    mayrogers13
    Member

    Yea Bre is right, usually hyperphe bodies can handle the most protein, then mild, then CPKU. So it’s kind of safe to say that CPKU is the most “severe” form of PKU. thats really the only difference between the tyoes.
    Sincerely, nMeaghan college PKU

    #6185
    Avatar of Nick
    arkham
    Member

    The difference between the 3 types of PKU are as follows (information I’ve gotten from a number of sites): classic PKU (cpku) – results from 2 severe mutations in the PAH gene and untreated phe levels tend to be above 20. ; Mild/moderate/atypical/variant PKU – results from one mild and one severe mutation in the gene and untreated phe levels tend to be between 15 and 20. ; hyperphenylalaninemia (hyperphe) – results from 2 mild mutations in the PAH gene and untreated phe levels tend to be below 15. The recommended phe level for all, at least during childhood, is 2-6. In adulthood, men and women who aren’t planning to be pregnant (and aren’t at risk of becoming pregnant) may be allowed higher levels, depending on their tolerance.

    #8545
    Avatar of medina
    medina2009
    Participant

    Hi, thiese numbers should be calculate with formula or without it? Arkham please explain?

    #8546
    Avatar of Nicole
    Nicole1982
    Member

     Hi Medina…..

    I think its WITH your formula :-)

    #8548
    Avatar of medina
    medina2009
    Participant

    thanks Nicole. but if it is related to the intake of formula, so if you consume  a lot of formula, your phe will be decrease

    and, if you intake alittle formula, your phe will be increase. I have a very big problem with my baby dietition. she said to

    us that your baby should use 100 gr formula every day . with her advice my baby phe gain to ./4 and it's very

    dangerous for his health. I want you please explain completly for me  this classification and ranges for using

    formula?

    #8553
    Avatar of Breanna
    BreaMarie91
    Member

    Hi Medina,

    Do you mean that when your dietitian increased your sons amount of formula his phe level increased? Was this the regular baby formula that she increased or the PKU formula.

    Let me know and I will try to help if I can!

    Breanna 18 CPKU

    #8555
    Avatar of medina
    medina2009
    Participant

    no Breanna. the type of formula that my son use is comida A. here they didn't classified the types of pku for us. but if

    this classification related to the use of formula as Nicole said, I confused , because may be one person has cpku

    and use very much formula . and the other person has HPA and use alittle formula, but both of them have their phe

    level between 4 -6 . so the classification of pku should not calculate with using formula.

    and now my question is that how we should classify the types of pku?

    #8575
    Avatar of kayleigh-ann
    kay
    Member

    well the difference is classical pku people can only have about up to 7 exchanges where as mild pku can have up 2 about 15 exchanges, and cpkus can't have much to eat mild pku can have like 1 and a half rounds of bread

    #8591
    Avatar of Nick
    arkham
    Member

    The levels I mentioned before for each type of PKU would be levels off-diet, without formula.

    The fact is, that because everyone is different, those numbers are just guidelines.  There is no way to be sure what form of PKU you have without having a mutation test – a genetic test to show exactly what mutations you carry.

    In my case, I have one mild mutation and one severe mutation, so I have moderate, or variant, PKU. 

    I have a fairly high tolerance for phe, apparently, as 30 years off-diet seems to have had no noticeable negative effect.

    On Kuvan, my levels are excellent (last one was actually a bit low, at 1.6), while eating 45 grams of protein (plus taking 15 grams of protein equivalent in formula), as my mild mutation responds very well to Kuvan.

Viewing 15 posts - 1 through 15 (of 17 total)
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