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PKU Test. I am saying no!! - Page 2

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 #21 of 65
Thread Starter 
Quote:
Originally Posted by mnnice
I am sure I'll get flamed here, but I really think declining PKU is a poor idea.
Just because no one in your memory in either side has PKU does not mean that your child couldn't. In fact most likely there would be no one.
Don't worry I wont flame you. I have heard worse about my choices from less educated people. I assume most of you are very educated. That is why I came here for help. You all have been very nice with your thoughts and comments.

I do know from a friend who was also deciding on what to do, that the PKU itself has to be on both sides of the family for the child to get it. This is what her friend was told by her doctor. Her child had PKU and she was grateful for the test.
post #22 of 65
Thread Starter 
Quote:
Originally Posted by ramlah
What do others do? I've heard of nurses using needles, which hurt and then aren't very effective in getting the blood to actually surface, so they have to milk the babies' heels to get enough. Sounds awful!! :
This is what happened with my first child. My hubby said she was screaming and crying so loud. It broke his heart. And the lady kept renching on her foot. He stopped her and yelled at her. He can't imagine what they do when parents are not there.

Same hospital 4 years later, My friend got it done and said the lady was so nice and gentle that her baby did not even cry.

Still, unless they gave me that card to destroy myself I will not do it.
post #23 of 65
There are devices called "tenderfoots" that cut a measured slice in the heel. Warming the foot in a warm cloth or bowl of warm water helps, too. The test is usually 3-4 paper circles that need to be filled in with blood, so the person doing the test sometimes needs to "milk" the foot to get enough blood to ensure the lab has enough to do the tests. The milking shouldn't be that uncomfortable.
There have been accounts of the heel being cut too deeply, needing stitches or causing nerve damage, but that has declined considerably since most hospitals stopped using scapels and started using lancets.
Each state mandates differents tests. While the test is often called the PKU test, it usually has more things tested, as pamamidwife mentioned. There's been some lobbying to include more tests, as the cost goes down when everyone does them.
I will soon be talking to someone who works in the state office. I will definitely ask about what our state does with the tests and about whether a test could be returned to the mother afterwards. My curiosity has been aroused on this question!
I started a new thread to talk about privacy issues with blood testing. Maybe you could come help me learn? http://www.mothering.com/discussions...67#post2416967
post #24 of 65
hm, well, I can certainly see both sides of the issue. I have gotten the newborn screening for all of my children.

My boys were both in the NICU for prematurity & they did the screen w/ blood they already had drawn through a central line for other labs.

However, w/ my hb (megan) I was seriously considering not having the test done...I'm glad I did. Megan has PKU. We have ZERO family history of PKU. It can be passed on (autosomal recessive, as someone else stated) or it can actually be a spontaneous mutation. For me, personally, when weighing the pros & cons, I don't think I could risk mental retardation just to avoid a poke.

And we have been told by the health dept, our metabolic geneticist, etc. that in order for the initial test to be considered "valid" it must not be performed before 48 hours of feeds (breastmilk, formula, etc.) That's also why it's repeated at 2 weeks old...because they are aware that some babies are not eating well at the 48 hour mark.

jmo.
post #25 of 65
, Apricot.

I used to be a ped. assistant and I did PKUs. I had mama or papa hold a very warm cloth on the heel for several minutes. I used "tenderfoots", which I held against the heel and, clicked a button. I very rarely had to "milk" a foot using this technique. If it was very difficult, I would redo this technique on the other heel and it would be superfast. I'd always request that mamas nurse during the procedure.
post #26 of 65
Before my 2nd baby had the PKU heel stick I rubbed his foot while nursing. He was four days old. When our family doc's nurse stuck him he didn't even flinch. He didn't even change his sucking pattern while she quickly dottted the blood onto the little circles.

My first baby screamed his head off when the nurse grabbed his foot, stuck him, and milked the blood out - without even telling me what she was doing, nevermind asking permission! She only told me what she was doing when I insisted that she respond, and then she mentioned casually that the test wasn't valid any way because he was only 24 hours old. I wanted to kill her!

So, my advice for those of you who decide to have this test: 1.Nurse during it!! 2. Have someone you trust do the heel stick.
post #27 of 65
As far as nursing during...

there have been many debates about that part here, and I come out on the side of not doing it. It's important to me to be ready to nurse immediately afterward, but not to let anything like that happen while DD is nursing. I want to keep that time sacred.

edited to add:
mimim:
That is horrible!!!! How infuriating! How does a person get to be like that???
How can anyone work with moms and babies and show no interest in being kind, if nothing else??
post #28 of 65
Quote:
Originally Posted by ramlah
As far as nursing during...

It's important to me to be ready to nurse immediately afterward, but not to let anything like that happen while DD is nursing. I want to keep that time sacred.
I want to stress what she said again.

I made the mistake of nursing my first DURING the prick like I said in my first post.
post #29 of 65
I just wanted to add that congenital hypothyroidism is not all that rare: 1/4000. It is totally treatable.

If untreated, it is as serious as phenylkenoturia, which is much rarer.

I don't think that it is right or wrong to decline the testing. As long as you will take the responsibility for making that choice, even if the outcome is that the babe is positive, but it wasn't caught until damage had been done. Chances are, a person's babe would be normal and therefore tested unnecessarily. Chances are funny things though...

Carolynn
post #30 of 65
Quote:
However, w/ my hb (megan) I was seriously considering not having the test done...I'm glad I did. Megan has PKU. We have ZERO family history of PKU. It can be passed on (autosomal recessive, as someone else stated) or it can actually be a spontaneous mutation. For me, personally, when weighing the pros & cons, I don't think I could risk mental retardation just to avoid a poke.
I agree. I know a great deal of my family history amd have always been interested in the genetics of it as I know a good deal of my distant family. Since I am familiar with so much of my distant family it becomes very interesting when you can pick out a recessive trait (like no ear lobes..I don't have lobes!) in distant (like 5th cousins) relatives. So I have a very different perspective of genetics because I actually get to see how it works.

Autosomal means that someone must have two recessive genes in order for them to develop the disease. It is possible that both parents can have the recessive gene and not have the disease themselves. They would simply be carriers. Without genetic testing it would be impossible to determine whether someone was a carrier for the disease.

Genetics of PKU
http://www.ess.sunysb.edu/tracy/genetics.html

I did allow the PKU test, it was very quick and dd didn't cry. I nursed her immediately afterwards. I refused some other things that I found absurd like the Hep B vax but PKU I was ok with.
post #31 of 65
I personally have no problem with the heel stick for genetic tests, and the finger stick for lead and iron. I'm not very concerned about slight discomfort during the procedure. When you take blood OUT it's very different IMHO from putting something IN (vit K, vax, etc.) You're not risking permanent damage to your child from the PKU test- that IS a risk with any vaccines. (FTR, all of my kids are vaccinated but on MY schedual, not the AAP's. Jack's not fully vaccinated yet.)
post #32 of 65
Since DS2 has a metabolic disorder that has yet to be fully diagnosed & since MIL is adopted we have decided to do Expanded Newborn Testing. With DS2 by the time dr.s figured out that he had metabolic issues he was already hospitalized losing 3 ounces a day (at 2 months old). the dr.s didn't think he would make it & if he would have caught a virus or infection he probably wouldn't have. To me it is just not worth the risk of NOT testing. Not after what we've been through.

AmiBeth
post #33 of 65
Quote:
Originally Posted by CarolynnMarilynn
I don't think that it is right or wrong to decline the testing. As long as you will take the responsibility for making that choice, even if the outcome is that the babe is positive, but it wasn't caught until damage had been done. Chances are, a person's babe would be normal and therefore tested unnecessarily. Chances are funny things though...
Exactly. You have to be willing to accept the responsibility for the outcome of your decisions, be it good or bad.

Also, I included just the *gist* of my informed consent for parents in my pp. I am well aware of the legal requirements of the document.

ETA: This is coming from someone who will also decline the PKU for my baby, due in March.
post #34 of 65
Quote:
Originally Posted by Ruthla
You're not risking permanent damage to your child from the PKU test
Well... there is still the slight risk of nerve damage by a careless tech. And the harder-to-define risks of compromising the bonding process, the bf'ing relationship, learning to trust people, etc., if the test does turn out to be very painful or difficult. Not something that can be measured, I guess.
post #35 of 65
well, heres my worthless .02:

my most recent pg was the first one where i "made decisions". i passed on the vit K and eye drops. i was educated by my mw about the "pku", and since several generations of my xh's family are adopted, i went with it. but i did it MY way. lol it was done by the ped at about 1 wk old. ds was nursing great (gained a # in 7 days). they used EMLA, and yes i know some don't feel it is safe, but i felt ok with it. after applying it and covering with an occlusive bandage, the nurse gave me one of those warmers that activates by crushing it in your hand. KWIM? 30 mins later, it took one stick and he did not cry. it was right for us.

and a word about nursing during sticks...my older ones were vax'd, at least partially. all were nursed during. no probs. 3yo not vaxed, but if he needed, say, a rabies shot...lol...i'd nurse him for it!
post #36 of 65
Thread Starter 
It is very interesting to here all these points of view. We are all so different, yet all seem to have one common thread. We want the best for our children.

Neither of my children are vacciated, nore will any of them be, I pray. You never know with our crazy controling gov. My son had nothing done to him, but being born. My daughter had the stupid k shot and pku test. She also had jaundice very bad, which is linked to that vit k shot. Son was circumsied on the 8th day. No I am not jewish. Just after much research and prayer I felt that is what I needed to do.
post #37 of 65
I agree with mnnice- I am going to refuse the Vitamin K, eye goop, shots, etc. everything EXCEPT the newborn screening. There is no need to subject your child to it in the hospital (if you are birthing there) because you have to get another test screening test done at the first pediatric visit about a week after he/she is born. It takes a week of ingesting milk for the results to be very accurate.

I know the heel prick may not feel great- but it will not cause any sort of problems that last longer than the 20 seconds it takes to do it- having undiagnosed PKU will cause permanent damage that could otherwise be prevented. I would hate to think that a little heel prick would prevent that sort of permanent pain and suffering.

The PKU test is the only thing that my midwife explicitly recommends and says that most clients get. And I am birthing at home in a state that is not homebirth friendly so you can imagine how different we are as a group than most.

PKU is also fairly common and isn't always directly inherited (just because no one you know of in your family has it doesn't mean your baby won't) as far as what I've read.
post #38 of 65
I refused to do them at the hospital at birth.

Were I had my son it was common for them to have to be redone at their 2 week well visit. I had him on a Friday, checked out Sunday, called back Tuesday and told them I changed my mind and I asked if they could do it then. They gave me the lab paper work. They did it through the vain. Which after seeing some of my friends’ new borns I felt it was more gentle.

With my girls I just sat up a doctor’s appointment 3 days after birth. I left the hospital with in 24 hours after delivery, by my own choice.

I know when I had my first if it was given soon after birth it often was not accurate. The first hospitals’ practices is why they had the high redone rate.
post #39 of 65
Wesaid no. Just like that. Nope. REason was that there was such a low statistical chance of dd having what they were testing for (inability to digest an enzyme or protein or something... I dont remember now), I intuited that she was fine, and could not have fathomed allowing them to stick needles in her little red foot and squeeze blood out for such an obscure possibility.

She is almost 14 mos now and wonderful.
post #40 of 65
I will do the PKU (well, expanded version, not just PKU) test this time around, even though our experience last time around was pretty miserable. This time around, I'm going to make sure baby's foot is very warm, she's in arms, and can nurse before, during, and after. Sadly last time around ds wasn't nursing at the time we did the test (took a long time to get him to the breast) and the room was way cold, so they had to stick and squeeze.

I must say, I cannot at all fathom the rationale behind declining the PKU test in part for fear of pain and infection risk and then ripping and slicing half a baby boy's erogeneous tissue off, thereby creating a big old wound that's a) extremely painful and b) may get urine or feces on it. Infection is one of the most common complications of circumcision. Talk about huge and unnecessary pain and infection risk. At least there's a medical reason for doing the PKU test - same can't be said for circumcision.
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