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Will you do a PKU test for babe? - Page 3

post #41 of 86
And see, now I was confused thinking she was saying she was told to test for Galactasemia again, not just carrier status of the children.

Some parents will not test for carrier status or affectedness of other children. This always puzzles me...given that carrier status does confer some health consquences.

Also, it is important to note that having Galactasemia makes it much more likely that you would get an infection from drinking lactose. Not a sure bet that they will die if exposed.
post #42 of 86
Thank you for the link to the laws. While I will probably have the PKU test done, when I brought my daughter to the pediatrician I was told that I *had no choice* and that *it was the law*. I felt like we were being forced into the hospital after trying so hard to avoid it for her. I will ask my midwife friend if she is able to do the test. That would be a much better option for us I think.
post #43 of 86
My next pregnancy will be a UP/UC, but this is something I will definately do.
DS has hypothyroidism that was discovered from the newborn screening. We were able to get him started on thyroid replacement hormone before he suffered brain damage.
post #44 of 86
i had both my dc tested. in NY they screen for 40 metabolic disorders.

i don't understand what the downside is for having your child tested.

a friend's brother has PKU, in canada, when he was born, they did not test and he is disabled. why take the chance?
post #45 of 86
Yes. It's a large potential payoff for basically zero risk.
It doesn't bear any relation to vaccinating in my mind - you aren't putting anything into the child, and none of the disorders are treated with vaccines.
post #46 of 86
We didn't test in the end but we wrestled with the decision . I had a problem with possibly inflicting pain on a baby who just got here. But I know the risks of any disease were much greater. Ultimately, if we had had genetic issues in our family history we may have been more proactive.

We did schedule the appt twice - our midwife had to cancel once and we had to cancel once so we left it at that and decided to sign the refusal form. I did have the state calling me until I signed it.

Also if you read the privacy disclosure and your "rights and responsibilities" (at least for CA) it sounds like something out of Orwell's 1984. The basically own your dna at that point. was a little scary.
post #47 of 86
We will be doing it again as we did with our first and second. It is free in Boston and tests for 30 different disorders. We found out that our second son is a carrier for a hemoglobin disorder, and we wouldn't have known were it not for the screening.

My midwife came to our house at the 1 week homevisit(maybe it was at 5 days) and I was able to hold him while she did it.

I don't see any downside to having it done.
post #48 of 86
My 2yr old cousin has one of the diseases they test for, and essentially, his life was saved because they caught it before he got sick. Noone else on either side has ever had it. Since it's just a prick, I will be doing it, but not immediately after birth (maybe a few days). I will decline everything else though.
post #49 of 86
We did the test for dd1, but not dd2 (anything "mandatory" can still be refused, though it was easy since we weren't in a hospital). There are some good points here that may convince me to go ahead and test this baby...but then again maybe not - I just don't like testing for everything and medicalizing birth and life so much (and I hold a master's in public health - bad poster child, huh?). Anyway, I wanted to add I've always heard that breastfeeding should not be negatively impacted by a diagnosis of PKU - as long as MOM follows the correct (specialized) diet while nursing.
post #50 of 86
Thread Starter 
I'm so happy to have gotten such a great response. We have decided that we will do the testing, as there is not really a down side (other than the prick) Now we just have to figure out where/how since our hb mw doesn't do the testing. She did say she could get us the materials to do it ourselves, however. So I need to find out more about that.
post #51 of 86
I had it with both mine, at the doc's office at about a week. Brief pain for the baby is the only con. I don't think it's a huge deal to skip it, since the diseases you're testing for are rare, but I figured it was worth it to know.
post #52 of 86
We had it done for our DD. We were wavering on whether or not to do it, and our hb midwife said that if we weren't sure, to just do it. She told me that only one time had she had a positive result from the test, and that no one suspected the baby had a problem. I felt that the benefits outweighed the risks. She didn't seem to notice the first poke, but she was poked again at one week and really screeched. She was kind of a screecher in general, though. After all was said and done, I felt good about the decision and would do it again.
post #53 of 86
http://www.mothering.com/discussions...d.php?t=633602

PKU is rare, but it happens. I wouldn't risk it. This poor mama's babe makes the reality of this scary, if not rare, disease that can be treated hit home.
post #54 of 86
We will probably do this for our next babe. My only anger about the PKU test is being told that it was "against the law" for us to not do it, and being demanded by the ped to go "immediately to the hospital" to have it done. If we had just had someone speak to us like intelligent adults and explain that nothing is injected, the amount of things that are tested for and how beneficial finding an answer would be then I probably would have been all for it. Any time I feel as though my hand is being forced with my child, as far as I'm concern, its shady and probably unnecessary. This is one of the very few situations where that has not ended up being the case. Either way, scare tactics and fear of criminal prosecution is not a great way to foster parental concern and childcare.
post #55 of 86
I'd find a new pediatrician - why on earth would you go to a hospital to put a few dots of blood on a card to be sent to a lab? My pediatrician does the PKU stick right in her office for us and sends it off. It's a screen I definately want done, but not at a hospital. If a ped office can't manage this I'd be worried they'd be sending us off to the hospital for all manner of other things they ought to be able to handle more easily in office.
post #56 of 86
For dd, I ordered the Pediatrix kit and my ped did it in her office. DD literally slept through it -- I was holding her, she nursed to sleep and I know for a fact she didn't feel a thing. The nurse used a heelwarmer on her foot for 20 minutes, and used a Tenderfoot lancet. It was a piece of cake and I will do it again for future babies. Like a PP said, it's almost zero risk for a potentially huge payoff. I don't equate it to other 'routine' procedures like vitamin K or eye goop etc. -- those I refuse -- but here, the benefits far outweigh the risks.

I recommend going with Pediatrix BTW -- they're the most comprehensive screen out there. Unfortunately a lot of states only mandate a handful of tests. IMO, if you're going to do it, you should make sure you're getting the most information possible.
post #57 of 86
Quote:
Originally Posted by Quirky View Post
I recommend going with Pediatrix BTW -- they're the most comprehensive screen out there. Unfortunately a lot of states only mandate a handful of tests. IMO, if you're going to do it, you should make sure you're getting the most information possible.
:

And not only that, but they aren't state run, so they aren't reporting anything to anyone except you and the doc or midwife who ordered the test.
post #58 of 86
Quote:
Originally Posted by mamaverdi View Post
:

And not only that, but they aren't state run, so they aren't reporting anything to anyone except you and the doc or midwife who ordered the test.
I would agree. If we do it, that's what we'll do. Doesn't seem worth it otherwise.

-Angela
post #59 of 86
No, we didn't get that done when ds was born (at home) because my midwife told me what they are testing for is extremely rare, and she said that when she does the test, it pricks the bottom of the little baby's feet multiple times, and most of them get very distressed. So we passed on it.
post #60 of 86
Quote:
Originally Posted by Natural Mommy*J View Post
No, we didn't get that done when ds was born (at home) because my midwife told me what they are testing for is extremely rare, and she said that when she does the test, it pricks the bottom of the little baby's feet multiple times, and most of them get very distressed. So we passed on it.
The diseases are not actually all that rare. The most common, congenital hypothyroidism, affects 1 in 4000 children -- not very long odds at all. Just in my babywearing group in the DC metro area, two mamas in the last year had babies with CH, which causes mental retardation if untreated. Babies are usually asymptomatic until permanent damage has been done. If you don't test and find out about it quickly --- the brain starts going downhill rapidly, and will never recover to normal. Another disease commonly tested for, cystic fibrosis, affects 1 in 2000 white babies. To me, it's simply not worth the risk of not finding out about these disorders.

Your midwife is also inaccurate when she states that the bottom of the heel has to be pricked numerous times. If done correctly, it requires one stick which can be almost painless. As I posted above, my daughter literally slept through it (she was asleep in my arms when they put the heel warmer on, and stayed asleep through the prick 20 minutes later). This was my home waterbirthed dd who did not get the Vitamin K shot or the eye ointment at birth and has never had a vax or an antibiotic in her life, BTW.
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