Community Discussion Forum Parent support question about weekly phe test

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #8457
    Avatar of medina

    I'm a mother from Iran. I have 2 months old baby that has pku.
    my problem is about weekly phe test. the lab said to us that you should feed your baby 3 hours before blood test.
    and after that the child should be hungry till the test will be done.
    my question is that should my baby be feed or not before testing?
    and if he feed, what kind of milk shoud eat? breast milk or comida milk?

    Avatar of Eugene

    My doctor dosen't care as long as I do it the sametime of day each week. I used to have my PKU Formula before but now I wait. You should find out from your doctor not the lab. Atleast here in the US when we say 'lab' it is the state, but still I think its up to your doctor more than anything.

    Avatar of Apostolia

     Hallo there, my daughter is one month old and currently diagnosed withpku. My doctor also told me that it doesn't matter, as long as you do it under the same conditions every time. 

    Avatar of Katie

    Hi guys.. I am 25 with PKU.. My doctor has always told me it does not matter when you take your blood, but to be consistent… I've been always taking my blood at night 2 hours after the last thing I ate or drank.

    Avatar of Breanna

    I was told by a few of my childhood PKU doctors that it does not matter when you do blood tests. Phe levels fluctate throughout the day, so no matter what you do if you do a phe level in the morning it could be completely different by night. Like Katie I try to be consistent by doing my phe levels right before going to sleep, but in the end it does not matter. Blood tests are just used to be sure that the amount of phe you are consuming is the proper amount.

    Avatar of Monika

    For those of you who check your phe before bed im assuming you get to do it at home,right?  So do you get everything you need from your docs in order to be able to do it at home.. Just curious cause i'd love to take Matthews blood on my own instead of having to drive to the lab

    Avatar of Breanna

    Monika, yes we do our blood tests at home. My family has been doing our phe levels at home since I was probably two or three months old. It is definitely easier than driving to the lab.

    You are seeing Jessica right? If so give her a call or an email and let her know you would like to give this a try (although I think she's still on break at the moment). She can give you the filter paper, envelopes, and lancets to do the blood tests. Have you done Matthews blood tests on your own before?

    Let me know if you need any help.

    Avatar of Grace

    Monika, I have a almost 9 month old and i was able to start doing my spots at home when he was about 4or5 months i think…it is soo much easier…My genetecist gave me the filter paper to put the blood on and I have had a really har time getting the lancets the hospital gave me a bunch but no pharmacy around or no pharmacy I can find at all carry or can special order the tenderfoot lancets and they are the only ones I will use I Have just come the conclusion with my insurance that I will have the buy the lancets online(which is not hard at all) and then I will have to submit a claim and they will reimburse me… 

Viewing 8 posts - 1 through 8 (of 8 total)
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