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How do we feel about the PKU test?

post #1 of 11
Thread Starter 
We took our Junebug in for her newborn exam this week (up 6 oz from birth weight at 12 days old, yay!), and the pedi asked if we wanted the PKU test done--a question I was not prepared for. We had a homebirth, we don't vaccinate, and we didn't do vitamin K or erythromycin... Personally, my default response to anything "extra" is always "no thanks", but my husband is quite the opposite! So, I told hubby I'd find some info on PKU testing for him to read so he could make the decision, but I really haven't found much yet.

Aside from the fact that I, personally, cannot handle the sight of infant blood [woozy!!], is there any compelling reason to decline PKU screening at age two weeks?
post #2 of 11
I am not in your due date (july), but i will explain why we are choosing to get it done. FWIW, we also don't vax, also don't do eye goop, Vit K, and are having a homebirth. But I see the PKU as non-invasive. You are not physically injecting them with who-knows-what, you are testing them for many different diseases. By 2 weeks, the test is extremely accurate, because your baby has had plenty of time to metabolize your breastmilk, so God forbid there is anything wrong, it will be pretty clear. The diseases they are tested for are incredibly rare, but PKU for instance, untreated can lead to mental retardation. It is for this reason that we also choose to have our children lead tested. We live in a house built in 1870, and know for a fact that there are several areas of lead paint. It is not fun to do, but wouldn't you know my daughter ended up having a higher level of lead in her blood at about 18 months old. It is better now, but I am not sure what would have happened if we hadn't found that out. For us, the bottom line is like vaxes: risk of the disease (in this case, something like PKU) vs risk of the tests. The risks of vaxes are too great for us to consider giving them to our children. We feel the risks of those diseases we are supposed to be vaxed against are much less than the vaxes themselves. Thus, we don't vax. The risk of the blood draw for us is much less than if we our children had one of those diseases it tests for, and we didn't know it.

If you do decide to go for it, there are several techniques for keeping it as painless as possible, such as warming the foot in a wet, warm diaper first, using special lancets, etc. You should be able to request any accomodations you want. You could also nurse during the procedure as well. Anyway, that was a book! Hope this helps!
post #3 of 11
Tamara, Didn't even think about it yet myself. But like the PP, it's non-invasive (relatively) & my thought is better to have more information about your baby especially when you have a potentially serious consequence, i.e mental retardation. I'm not doing a HB, but luckily I am birthing at one of the more progressive hospitals in the country. I'm also refusing a number of standard treatments at the hospital, Hep B vaccine, eye drops, Vit K, etc. I will be vaccinating selectively on a delayed schedule, if at all. Ultimately, I feel like all of these choices are based on benefits vs consequences. Those differ for each treatment & each parent. However, I think that the benefit of the PKU test is worth the small blood draw.

Good luck reaching your decision.
post #4 of 11
I know a boy with PKU. Basically, without that newborn testing, he wouldn't be a happy, healthy 11 year old now.

The biggest thing to me is, for the price of only a blood draw (make your husband take him if you can't take the sight of blood!), you can find out about a TREATABLE condition that needs to be caught early for best outcome.

Our hospital does the test after applying a little hot pack to the baby's foot. It upset my son to be held still for the blood draw, but he calmed immediately upon their finishing the test, so I don't think it was too awful for him.

--willo
post #5 of 11
Rowan was asleep in my chest when they did the heel stick and she didn't wake up. I agree that the "price" of the blood draw is worth the information provided by the tests...these are rare conditions, but they're the sort of thing that can't really be predicted otherwise and which can be controlled if caught early.
post #6 of 11
i'm not putting anything in or on my baby body but i will be getting the PKU test done at 2 weeks. a little story for you- my midwife has been in practice for 12+ years. she had a repeat client that had 3 HB with her. this client had the PKU test done with her 3 other children(first in hospital). this client was going to pass on the test for her 4th baby since none of her other children had PKU. last minute she decided to go ahead with it and her baby did have PKU issues. this is the only client my midwife had who's baby had PKU. if she hadn't tested her client would of had a very sick baby. my midwife is very gentle when she does the test. warm the heal with some compresses and tries to do while baby is nursing or sleeping. most time the baby doesn't even flinch.
post #7 of 11
Also not in your DDC, but yes, we are going ahead with the PKU (but none of the other invasive, risky procedures like vaxes, circ, hep b, etc.). We also ordered an extensive PKU kit in addition to the tests required by the state through www.pediatrix.com. We chose this for our son two years ago and it was a relief to have one less thing to worry about regarding his health.
post #8 of 11
We did the PKU and declined everything else, for the reasons stated by others.
post #9 of 11
In my state (Oregon), it tests for over 200 disorders and conditions. It varies by state. We did it only once with my first child 2 years ago, b/c that was all my MW recommended. This time we got the second test at 2 weeks.
post #10 of 11
We UC, don't vax, don't do any of the other stuff...but we do have the newborn screening (it isn't just for PKU) done at two weeks. These things are rare, but if we can prevent problems by tweaking our lifestyle a bit, it is well worth it to us.

Some tips - hold a warm compress to baby's heel for 10-15 minutes prior to the prick. Some places will give you a heating pad thing. Otherwise, grab a sposie and fill it with hot (but not too hot) water. Hold baby in an upright position so that the blood is flowing down. Do not let them milk your baby's foot. It actually can invalidate the test in some cases and is painful for the baby. If they aren't abl eto do it, make them get someone else. A lot fo mothers nurse their babies with great success. I haven't done this. WIth all of the nursing problems I have had to overcome with my babies, I just didn't want a bad experience associated with nursing for them.
post #11 of 11
Thread Starter 
You guys are excellent (and unanimous )! Definitely going ahead with the screening. Thanks!!
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