Are you refusing (or refused) the PKU?

[theboysmama]

I am wondering who has refused the pku heel stick and why they made that decision. Also if you decided to do it why?
This is our 4th child and we have always done it. We did both sticks w/ ds1 but w/ ds2 and ds3 we just did 1 stick on day 5. None of my children have had an abnormal result. The test has now gone up to $120 dollars and I am not even sure exactly what they are testing for. I just don't know if it is necessary.
The midwife will be here tomorrow and we were planning on doing it then but now I am not so sure.
Any advice or experience would be much appreciated.
TIA

[jrabbit]

our mw recommends doing it one time at one week, rather than the two tests, that the "traditional" hospital method recommends. She does it differently, not a "prick" - the way she does it is supposed to be less painful. But I digress. When we discussed it at the last class, her feeling is that the diseases are all exceedingly rare, but they are also exceedingly dangerous and have no warning signs. So, we will do it. And, our MW is very very very opinionated about many things, no vax, no antibiotics, no circ, vegetarianism. So, for her to be in favor of this test means a lot to us.

--janis

[Rosegin]

Originally Posted by jrabbit

our mw recommends doing it one time at one week, rather than the two tests, that the "traditional" hospital method recommends. She does it differently, not a "prick" - the way she does it is supposed to be less painful. But I digress. When we discussed it at the last class, her feeling is that the diseases are all exceedingly rare, but they are also exceedingly dangerous and have no warning signs. So, we will do it. And, our MW is very very very opinionated about many things, no vax, no antibiotics, no circ, vegetarianism. So, for her to be in favor of this test means a lot to us.

--janis

I agree with your midwife. It's a rather non-invasive test that can mean life or death for a baby. I don't understand why anyone would skip it.

How does your midwife do the test?

[namistenicole]

Originally Posted by jrabbit

And, our MW is very very very opinionated about many things, no vax, no antibiotics, no circ, vegetarianism. So, for her to be in favor of this test means a lot to us.

--janis

Same here. We decided to do it.

[Lauren710]

I wouldn't skip it.. newborn genetic screening tests like the PKU test detect genetic disorders that otherwise don't have any recognizable symptoms until well after the damage is done (mental retardation, organ damage, etc.). It's a long shot that your baby will have one of these disorders, but if you find out now they're generally controlled by strict diets and the kids can lead normal lives.

[Luv2bemommy]

I'm not against it. It's not one of those things I refuse but if I don't get it in time, it's not a big deal to me personally.

[AmieV]

Originally Posted by Lauren710

I wouldn't skip it.. newborn genetic screening tests like the PKU test detect genetic disorders that otherwise don't have any recognizable symptoms until well after the damage is done (mental retardation, organ damage, etc.). It's a long shot that your baby will have one of these disorders, but if you find out now they're generally controlled by strict diets and the kids can lead normal lives.

This.

I have yet to hear a compelling version of how the risks of skipping this test outweigh the benefits.

[jrabbit]

Originally Posted by Luv2bemommy

I'm not against it. It's not one of those things I refuse but if I don't get it in time, it's not a big deal to me personally.

There isn't a "in time" for this test. You just get it done. You want it done before the baby is a month old, probably.

my MW does something that she described more like a "slice" than a "prick" -because the prick requires pressure to squeeze the blood out, I think. And the slice is done on a toe, rather than the heel. I wish I understood better, but I don't.

[terrainthailand]

we've had a trying couple of weeks here so I haven't been posting much, but wanted to share that my daughter was diagnosed with hypothyroid based on the newborn screening exam. Because we caught it early we are assured that she will live a normal life (with treatment), if we hadn't she would likely develop significant mental and physical disabilities. We are still devastated with the diagnosis, but somewhat at peace given the outcomes are so promising. My daughter had no symptoms of being unwell and I have no family history of thyroid or any other developmental problems so this was a complete shock. I am incredibly thankful we had the screening.

[sarahmagoo]

I have the test paper upstairs, but I keep forgetting what all they test for now with the heel prick. More than when my other two were born. I would not consider skipping it.

My daughter had it done by a lab tech at the hospital. She was lying in the bassinette screaming, and I was trying to comfort her without holding her, and I was crying. It was awful.

With my son, my MW did it during a home visit about a week after the birth. She had me nurse him while she did it and he barely whimpered when she did it and went back to nursing happily. What a difference! My MW said that sucking actually has an analgesic effect for them, so when they do the test, nurse, nurse, nurse... or give them a bottle... or a soother... or a finger to suck on.

[leila1213]

Not in your DDC, but my sis is due in March so I'm interested in the latest arguments for and against. One thing I saw recently was that the PKU blood is saved for later use by the state. Cataloging DNA, I believe? You can probably use your imagination there, but maybe someone who knows more can chime in.

[i0lanthe]

Originally Posted by leila1213

Not in your DDC, but my sis is due in March so I'm interested in the latest arguments for and against. One thing I saw recently was that the PKU blood is saved for later use by the state. Cataloging DNA, I believe? You can probably use your imagination there, but maybe someone who knows more can chime in.

http://www.wired.com/medtech/genetic...born_screening
looks like I don't need to use my imagination, I can use Wired's imagination (giggle)
Right now (unless the committee has gotten rolling by now) it depends on which state you're in - CA keeps it (but refuses to let anyone else use it for anything, even finding a missing child), TX destroys it immediately, etc. etc.

[jrabbit]

I was reading about this recently - somewhere on MDC, maybe? ... conspiracy theory about the DNA cataloging. The way the legalese is written, it's actually just talking about being *able* to have a database of DNA results in case of some type of national emergency, not that anyone is going to actually catalog newborn DNA *now* - and even then, it was about results and would have been anonymous, not with names.

I am not worried about it, personally. I agree in principal that I don't want my children's DNA on record somewhere, though, but I am skeptical of it being any real risk at this point.

[theboysmama]

Thanks so much for all of the responses. We decided to go ahead and do. It is better than stuff that goes in (like vaccines, eye goop, vit k, etc) I decided I would really regret it if I didn't do it.

[mamavegan]

We plan to do it once at 1 week.

[arahzel]

Alabama has the "newborn health screening" instead of the PKU. I think they use it mainly to track predisposition toward genetic disorders.

I didn't refuse it, but I almost decked the biatch of a nurse who stuck my baby twice. She had little cuts all over her heels from the hospital tests already. Not only that, but they have to bleed them out now. It's not just blood smears like the PKU tests that were performed on Kairi. They actually had to fill 5 circles on paper, bleeding through from one side to the other.

Grrr.