Viewing 7 posts - 1 through 7 (of 7 total)
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  • #5438
    Avatar of Daria
    formyson
    Member

    I have been checking out this site for the past few weeks and I am noticing that the management of PKU seems to vary so much depending on who your doctor is. I know my son’s nutritionist wants levels between 2-5 but I see that some doctor’s are allowing up to 6. I also read a story of a kid who is allowed 750 mg of phe a day and the doctor says he can drink 6 oz of milk. My son is allowed 1500 mg of phe a day and they don’t want him to drink straight milk for fear he will stop drinking the formula. Have people been to different treatment centers and gotten different opinions on how to manage their diet??

    #5442
    Avatar of Breanna
    BreaMarie91
    Member

    Hi- nThe reason some people are allowed different amounts of Phenylalanine in a day has to do with things like their weight, age and how much phe they’re personal body can handle. For example me and my sister are allowed 300 phes (or 20 exchanges), mainly because we just can’t handle that much. As for the whole level things, I’m not positive about that, I know that generally it is 2-6 mg/dl but it is also different for many other people. I know someone who was told to keep his levels between 5-8mg/dl and when your pregnant some doctors want your levels to be between 2-4mg/dl. It might just be because your child is younger but I’m not 100% sure.
    It’s like with everything in the world, nobody is going to handle their childs school exactly the same right? Some parents have their children do their homework once they get home and others don’t mind, life in general is just never 100% the same for anyone and it’s the same with the PKU diet. Doctors are still humans so they’re going to be alittle different on how they handle things. nBreanna
    Hope this helped alittle.

    #5447
    Avatar of michael
    chargers1
    Member

    i think the reason it varies depends on what type of pku you have. possibly your size, and intake of food. ni know that milk is the last thing you should be drinking, but i have had it every now and then, sometimes i just have a craving for cereal. i’AM seeing by doctor on MONDAY, i will ask her about that.

    #5463
    Avatar of Breanna
    BreaMarie91
    Member

    Chargers is right, I guess it depends on who the patient is. How much phe someone is allowed is based on things like age, weight and your metabolism. Me and my sister are only allowed 300phes a day because that’s all our bodies can handle before our levels get to high.
    As for wanting levels to be different I’m not 100% sure why that would be. Probably because some doctors just believe it is safer to have different type of levels but I know the most common levels that doctors want is 2-6mg/dl. I know of someone who is about 26 and his doctors want his levels between 5-8mg/dl. I guess it’s kind of like school. Just because all kids go to school doesnt’ mean that their parents handle it the same way as others. Some like their children to do their homework once they get home and other parents don’t care. Some doctors want levels to be between certain numbers and others want it between other numbers. I guess I can’t give you an exact reason for why levels are different for doctors. nBreanna

    #5485
    Avatar of Keisha
    kmariewood
    Member

    hi i am not understanding why everyone is talking about their phe levels being between 2-5 or 2-6 we have always worked it out to be between 120units and 480units can anyone please help clear this up.

    #5488
    Avatar of Breanna
    BreaMarie91
    Member

    Well there are, I believe, two different ways to count blood levels. One is in milligrams per decaliters (which would be the 2-6) and the other would be what your using which is the 120-480. I can’t remember what you’d be counting in but I believe to transfer to the small number you divide by 60. nBreanna

    #5870
    Avatar of Meaghan
    mayrogers13
    Member

    Diets vary because PKU is different in ever person. Im 18 and a healthy weight and height and I am only allowed 225mg/day because I have an extremely low tolerance for protein. Stick with what your doctor tells you. And worse comes to worse, a stricter diet can’t hurt.

Viewing 7 posts - 1 through 7 (of 7 total)
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