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Old 02-11-2013, 11:13 PM   #61
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Re: anyone decline the PKU?

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I just talked to a nurse friend and she said that over 99% of the babies born in the area get both heel pricks, and the very few who don't don't do it for religious or philosophical reasons (not sure exactly what the reasons are). She also said that you can do it at the same time rather than two different times, just that both were an option and having 2 started from the main hospital to which this one stems off of it.
That makes a whole lot more sense. I was genuinely shocked to think that any hospital in this country would have babies leave without the testing. 1 stick or 2 sticks isn't an issue. Perhaps your state has more requirements and needs more blood. Glad that they do them all at the same time.

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Old 02-12-2013, 05:24 AM   #62
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Re: anyone decline the PKU?

we declined everything else except the hearing test, but we had this test done. DS didn't even notice it.
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Old 02-12-2013, 05:47 AM   #63
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Why not test? We paid extra to test for everything. Fl only tests for 26 free..since we wanted them all we had to pay. Better to know than to always wonder.
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Old 02-12-2013, 07:15 AM   #64
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Re: anyone decline the PKU?

We did it last time and our midwife did it 4 days after birth and she let me hold him while she did t and he didn't even notice! She said that she's never had a baby cry when she does it; she tries to be very gentle. I would have opted out in the hospital, but that was okay for me.
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Old 02-12-2013, 03:37 PM   #65
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Re: anyone decline the PKU?

I am super into making the choice that is best for your family as opposed to just following the grain. I declined the genetic testing at 13 weeks pregnant (because my DH and I would not terminated if there was something wrong) we had a homebirth, nursed for 3 years etc, but to decline this test is absolutely insane.

It screens for around 30 conditions (depending where you live) that are all manageable if found early but many fatal if not detected. Just because you have one or even five babies prior that are fine do not mean your next is safe (or even you prior children, it might be undetected). If both you and your DH are carriers of one of these conditions, every child you have has a 1 in 4 chance of having it, meaning you could have many kids (or none) that dont have it before you have one that does.

My DS tested positive for one of the conditions they test for - MCAD- look it up- If we hadnt found out he would probably be dead right now. Instead I have a perfectly normal 3 year old who we just have to be super careful of when he gets sick (has to sometimes be hospitalized). No one anywhere back in the family has it that we know of. So it came as a huge shock to us.

There are many reasons to decline certain tests, but there are no risks to this blood test, only major gains. So no one should decline it, unless they have specifically been tested for all 30 conditions themselves.
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Old 02-12-2013, 03:44 PM   #66
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Re: anyone decline the PKU?

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That makes a whole lot more sense. I was genuinely shocked to think that any hospital in this country would have babies leave without the testing. 1 stick or 2 sticks isn't an issue. Perhaps your state has more requirements and needs more blood. Glad that they do them all at the same time.
I think it's 57 different disorders they test for. The list is pretty long.
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Old 02-12-2013, 05:27 PM   #67
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Re: anyone decline the PKU?

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My DS tested positive for one of the conditions they test for - MCAD- look it up- If we hadnt found out he would probably be dead right now. Instead I have a perfectly normal 3 year old who we just have to be super careful of when he gets sick (has to sometimes be hospitalized). No one anywhere back in the family has it that we know of. So it came as a huge shock to us.
I posted a link to the FOD site I'm sure you know well.

THIS is why you do the testing, this mama is correct, the testing likely saved her child. The likely hood of it being picked up later is slim, as docs just know very little about these conditions!
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Old 02-12-2013, 11:42 PM   #68
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Re: anyone decline the PKU?

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I posted a link to the FOD site I'm sure you know well.

THIS is why you do the testing, this mama is correct, the testing likely saved her child. The likely hood of it being picked up later is slim, as docs just know very little about these conditions!
I dont see the link- but regardless Im sure I know what site you are talking about Does your child have a FOD?

And yes, so true- anytime we go to the hospital none of the doctors or nurses have ever even heard of MCAD. We have to educate them when we go.
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Old 02-13-2013, 09:29 AM   #69
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Re: anyone decline the PKU?

Ugh, I didn't decline it, but after having my midwife come over and administer it I wish I did. Not for any religious reasons, but because our chances of having something wrong were sooooo tiny and it didn't seem worth putting her through the pain and discomfort. Her test was completely normal, so I guess the peace of mind was worth it, but it was not fun.

We also declined vitamin K, eye ointment, hearing test (we can tell she hears just fine), and the GBS test since I wasn't going to do antibiotics even if I was positive. This was the only test we did.
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Old 02-13-2013, 11:01 AM   #70
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Ugh, I didn't decline it, but after having my midwife come over and administer it I wish I did. Not for any religious reasons, but because our chances of having something wrong were sooooo tiny and it didn't seem worth putting her through the pain and discomfort. Her test was completely normal, so I guess the peace of mind was worth it, but it was not fun.

We also declined vitamin K, eye ointment, hearing test (we can tell she hears just fine), and the GBS test since I wasn't going to do antibiotics even if I was positive. This was the only test we did.
I think each kid is different. My first screamed bloody murder in that super pathetic newborn cry. My second cried, but was easily soothed and was totally fine within seconds. Yes, the chances of having any of the conditions are minimal but, the benefits if she tests positive, are huge.
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