PKU testing

[AJ's mommy]

Hello,

I'm just curious to find out if some of you decide to refuse the PKU testing at birth and why? I'm trying to make up my mind! Thanks for your reply!

[xixstar]

we didn't do the testing until about 5 days or a week later because there was too much information about less accurate testing in just born babies. We did decide to go with the testing though because of all the things they do test for and the fact that it is helpful to know about a couple of them before symptoms show up. We decided that the small heel prick was a small cost for the possible benefit. And, for extra info, we're otherwise completely intervention free with birth and child health-wise too.

[texasnurse3]

I don't have children so I don't know how valuable my input will be, but from what I've read I have tentatively made the decision that in the future I will have my babies tested about 2 weeks after birth. That way they only have to be pricked once (in Texas the standard is two tests) and I can know that they have been tested for disorders that can be treated early on before they become a big deal.

Heal pricks can be traumatic for a baby, but a caring nurse or midwife will know ways to make it easier on everyone. Warming the baby's heel first, using the right kind of lancet, having baby nurse, etc.

In my opinion, it's a short-term discomfort in exchange for possible major long term benefits.

[womenswisdom]

We did elect the PKU because it's fairly non-invasive and the multiple disorders it screens for can be very serious or deadly if not treated correctly. IMO, the benefits outweighed the risks.

[GoestoShow]

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Edited by GoestoShow - 12/17/10 at 9:00am

[Bluegoat]

THis is about the only routine baby testing I'll do, though I will likely put it off until the first well baby test. Which reminds me I need to get my birth plan printed out for my doctor to look at.

[ChristSavesAll]

Just wanted to share this about PKU, I've been trying to find the links I read when pg with dd about the cause of PKU (still trying to find them) but I did come across some other interesting info.

"In children who did not start receiving treatment for PKU until they were 20 to 40 days old, the benefits of breast-feeding, over formula feeding, was apparent and breast milk appeared to confer some extra benefits to such children born. This is demonstrated easily through higher IQ scores of PKU children who had been breast fed during a preliminary study, the other kids with phenylketonuria who had been formula fed scored lower; these test were of course carried out before these children started on similar restricted diets. Anther interesting fact is that the accumulation of the trace molybdenum mineral is often observed in infants with PKU; this abnormal accumulation of molybdenum is universal in kids with PKU. This is another reason breast feeding is initially important, many of the formulas are reinforced with molybdenum far exceeding levels found in breast milk and hence newborns with phenylketonuria who are fed formula milk run the very real risk of accumulating too much molybdenum in their bodies."

http://www.herbs2000.com/disorders/pku.htm

[*MamaJen*]

I always advocate very strongly for the PKU testing. It's a test with virtually no risks, but it can prevent a lifetime of serious mental retardation. If you catch the metabolic diseases early, you can prevent just about all of the effects, but if you don't catch it, the results are devastating.
Something like a Hep B shot or Vitamin K is something that goes into the baby; the metabolic screening is just drawing a tiny prick of blood -- it doesn't even count as an intervention, in my mind. My midwife did it several days after the birth, she warmed the heel, I nursed him before and after, and it just wasn't a big deal. A second of pain versus a potential lifetime of severe mental retardation -- there's no question in my mind about the value of the test.

[goodygumdrops]

Wow, I didn't know that the early tests were often inaccurate.

I had a frightening experience with this and I guess that it was because the pku was taken so early. My doctor called me on a Friday night to tell my son tested positive for cystic fibrosis. I was in shock and pretty freaked out until I got in touch with my midwife who told me the second test was negative. Any thus, my son does NOT have cystic fibrosis. Talk about a scary weekend. I cried a bunch for no reason at all.

So, now I know, next baby wont' be tested until 2 weeks after birth.

[jecombs]

Originally Posted by *MamaJen*

I always advocate very strongly for the PKU testing. It's a test with virtually no risks, but it can prevent a lifetime of serious mental retardation. If you catch the metabolic diseases early, you can prevent just about all of the effects, but if you don't catch it, the results are devastating.
Something like a Hep B shot or Vitamin K is something that goes into the baby; the metabolic screening is just drawing a tiny prick of blood -- it doesn't even count as an intervention, in my mind. My midwife did it several days after the birth, she warmed the heel, I nursed him before and after, and it just wasn't a big deal. A second of pain versus a potential lifetime of severe mental retardation -- there's no question in my mind about the value of the test.

We are a very non-interventive family, but the PKU test is something I feel is very important for the life-long health and development of my baby.

[mamatolevi]

Originally Posted by jecombs

We are a very non-interventive family, but the PKU test is something I feel is very important for the life-long health and development of my baby.

ditto! The risk of a complication from a heel stick is tiny; it can be done in front of the mother or even while she's nursing the baby.

It's also a matter of deciding which battles to fight. If a mother wants to leave before the time they usually discharge, complying with something as small as a heel stick is one less battle to fight.

It's also reassuring to hospital staff if you are able to say "I already scheduled an appt with Dr. Soandso, my pediatrician, for x date." They're more likely to listen to a mother who has already made arrangements for care v. one who claims they'll do it once they get home.

[JennTheMomma]

I think its important to do the PKU testing. Hunter was done in the birth center before we left (I think 2 after birth). We're having a homebirth this time, so babe will be done at about 2 weeks when we take him/her to the Pediatrician for his/her first check up.

[hapahaolegirl]

Yes please get it done, preferably 48 hours after birth. Do not wait until your baby is two weeks old because if your baby does have PKU two weeks is a long time and will have suffered some brain damage at that point. The sooner you catch PKU the better the outcome for your child.

My son has PKU so I know all about this.

[tessie]

It's done here at about seven days (I think - I was just a bit sleep deprived!). The midwife does it during one of the home visits. Knowing that prompt treatment for conditions such as CF is vital I saw no reason to refuse it.

[LianneM]

I took both of my babies in at 7-10 days old. It's the only procedure I chose to have done.

[zenmama108]

I had DD at my midwifes house and decided not to have the PKU test done. However, I was positive for group B strep, so DD needed to have the tests done for the strep, and I don't think getting the pku test would have bothered her much at that point.

[someguy79]

I would check about the retention

Of the blood samples. Some states such Minn. have used kids DNA for genetic testing w/o parent's knowledge or consent. Also some states like mine Indiana keep it for 24 years. You can request it destroyed I wonder if they really do it?

My understanding you can get private testing done. It was too late before we have the last one to get info.

I am more concerned with my kids DNA being on file somewhere than the results of the said tests.