anyone decline the PKU?

[Kiliki]

just checked my state's website. It *can* be declined.

still rdg....

[misskira]

Originally Posted by Nerissa I work in the schools and have seen the results to a kid that didn't get tested and/or parents didn't follow the rules so to speak and it is sad. I would do the test

yes yes yes.
I'm a special education teacher. I declined the eye goop, I declined a hospital bath. I understand declining the vitamin k shot. The heel prick was really uncomfortable for my first baby, and my second nursed right through it. But after seeing the results of a metabolic disorder, I personally wouldn't ever decline the pku. My student had mental retardation from the food she ate before they knew what was wrong. She then lived with a very limited diet for years. Eventually she had a liver transplant and can now eat normally, however the cognitive delay is for life.

[Kiliki]

I am thinking we will do it but I want to see if we can delay it this time to avoid having to do it twice.

My DD1 cried, but we were in a hospital and the whole experience was miserable for us both, so I don't remember it vividly. My DS nursed right through the heel stick and never even opened his eyes. My DD2 was ballistic and hysterical both times. I hid in the bathroom and cried while they stuck her the second time, I was so upset over it.

I just want to avoid doing it twice. It was awful.

But I do see the value of it. Apparently the things it tests for are things that most people have no known family history of, and are things that can kill or seriously mame a child forever if left untreated.

YIKES!

[oregonmom]

We were told the second one tests for more things then the first one, so we do the second one after a few days, but not the first one.

[ingrid5699]

I'm sorry but I do NOT get the reasoning for declining this test.

All of the diseases it tests for are fatal or at least cause major disabilities if not caught early. And all are treatable if caught. And all CAN show up as a spontaneous mutation and not only be passed on so the fact that you already have healthy kids doesn't make you 'safe'.

My BIL was one of the first babies saved by this test 39 years ago. He has phenylketonuria which is what gave the test the name. With a special diet he was able to lead a totally normal life-graduated high school, got a master's. Without that test he would have had little brain function left even by the time he started preschool.

But I guess it's your child so do whatever you are comfortable with. Me-I would NOT want to skip this test.

[ingrid5699]

Okay-reading better I get why you declined. You are right that the test is NOT accurate enough before baby has had some milk so generally 48-72h. Doing it right after the birth is not recommended and I think on that grounds I would decline too. Any ped should be able to do the test so I would just have him do it in that window.

[PoshPants]

they should be testing more than just PKU, I'd never ever decline such a test! If your baby has one of the many conditions they test for, the chance of survival is much better when you know about it ASAP.

[PoshPants]

Originally Posted by misskira yes yes yes. I'm a special education teacher. I declined the eye goop, I declined a hospital bath. I understand declining the vitamin k shot. The heel prick was really uncomfortable for my first baby, and my second nursed right through it. But after seeing the results of a metabolic disorder, I personally wouldn't ever decline the pku. My student had mental retardation from the food she ate before they knew what was wrong. She then lived with a very limited diet for years. Eventually she had a liver transplant and can now eat normally, however the cognitive delay is for life.

We don't do the bath or the eye stuff in Europe (or vaxs at birth) but we sure do the metabolic testing!

[zandj]

we had a homebirth and went in after my milk was in for a day or so to our GP who gave us a slip to get it done at the hospital. No big deal and better than there being something wrong! only had to be done the once (thankfully b/c she SCREAMED! ugh)

[Kiliki]

Originally Posted by ingrid5699 Okay-reading better I get why you declined. You are right that the test is NOT accurate enough before baby has had some milk so generally 48-72h. Doing it right after the birth is not recommended and I think on that grounds I would decline too. Any ped should be able to do the test so I would just have him do it in that window.

I didn't decline it with any of my kids.

I was just wondering if anyone HAD declined it, and could offer some insight on their choice. My MW has clients that DO decline it. And I was wondering WHY someone would choose to decline it. That's all.

Like you, I see it as a valuable test.

We only do one heel stick here, there are not two. Yes, it tests for more than just PKU. It tests for a lot of metabolic disorders. You *can* decline it. I personally never have.

But I will be seeing this time if there is a way to postpone the test to a few days after the birth. It seems totally useless to do it when the results won't be useful (ie., quickly after the birth like was done before).