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PKU Test. I am saying no!! - Page 4

Poll Results: Did you say no to the PKU test with any of your children?

 
  • 31% (37)
    Yes
  • 68% (79)
    No
116 Total Votes  
post #61 of 65
Quote:
It is a misnomer that your baby has to be eating milk for the test to be accurate.
Kimberly,

I just wanted to say that I'm not sure about the accuracy of this information. I think Pam is just about always right but my daughter has PKU and we have been told nearly the opposite.

There is a small shift in phenylalanine levels before the 24-48 hours of good feeds, and most babies who have PKU and are tested during that small shift will still get identified. However, there are a handful that won't. So, if you are only going to to the test once, please do it after the baby has been eating well for a few days.

In the early days after her diagnosis, when we checked my other children, we actually did a "phe challenge" where we fed them as many complete proteins as we could, waited a certain amount of time & then had the labs drawn.

Other metabolic disorders may not need the 24-48 hours of good feeds, and since I'm not an expert on those, I won't comment. But, the PKU test (specifically) will give the most accurate results when feeding is well established.
post #62 of 65
Amanda, so in the end, it is still fine to wait a few days and refuse the 24 hour test, right? Not everything is picked up the first day but by waiting a few days you won't miss anything. Is that right? I mean there is nothing I can think of that would be picked up on the first day of life but you would get a false negative by waiting.
post #63 of 65

We refused at the hos...

But than I took her to the Dr. and the nurse wouldent prick her so then we went back to the hos. She was 8days old when she was done and 1. didnet cry and bled like a pro. the nurse siad it was the most amazing one she had ever done and called about the whole floor in. she told me if I really totally refused they were told to contact CPS. WHATA LOAD OF !@#$. anyway it wasent a huge deal. But I dont like to think my DD's Blood is on a card somewere in a filing cabnit in OHIO just waiting for DNA testing. May refuse the next becaus I'm paraniod .

Elizabeth
post #64 of 65
Thread Starter 
Quote:
Originally Posted by p1gg1e
But I dont like to think my DD's Blood is on a card somewere in a filing cabnit in OHIO just waiting for DNA testing. May refuse the next becaus I'm paraniod .Elizabeth
Yes, I am a bit paranoid as well. Don't want to see any clones of my kids walking around someday.
post #65 of 65
Just wanted to put my 2 cents in on this.

I believe in:


But I did have the PKU test done for both my babies.

My DD's PKU test was in the hospital 2 days after birth, and over very quickly, so I thought it wouldn't be a big deal with DS. I weighed carefully the risk/benefit for my DS's PKU test, and decided in favor of it. DS was born at home, so I had the choice between the Health Dept. and the county hospital. Not wanting to expose DS to germs at 2-weeks-old, I brought him to the Health Department. BIG MISTAKE! The staff there do so few PKU tests that it took them what felt like YEARS to get enough blood out of his poor little foot. Nursing did not help much!

My advice:
If you do the test (and I do think this one is worth it), go somewhere you have heard from someone else that the staff knows what they're doing so it won't be traumatic for the babe!
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