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Discussion Starter · #1 ·
Most states require the second newborn screen (the heelstick for PKU etc) <i>only</i> if the first was done before baby is 24 or 48 hours old, but there are a few states that <i>require</i> two tests -- period. I'm in one... (but with dd I was in CA which does not require two.) I don't want to do two. My MW says that our state requires two because they need a baseline before milk comes in, so that they can compare it to the second test which is done when baby is a week or two old. I cannot find anything to back this up. All I have found is info that says that 6 days old (or so) is optimum for testing, that testing too early can give false negatives or false positives, and that the second test is done because the first one isn't as accurate but that's when they have the newborns accessible in the hospital. So, if that is the case, then I'll just skip the first test and do one at a week or so old. Obviously I can decline anything I don't want to have -- however, I want to make sure I haven't missed anything about this "baseline" test being necessary -- anyone have any better info??? (BTW, my MW also told me that ALL states require two tests.. but I'm pretty sure I've found evidence that isn't true, so I'm not real confident in this baseline theory either.) Thanks! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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I've never heard of the baseline thing. Not say that isn't correct, I've just never heard of doing two (I'm in CA FWIW). The reasoning behind testing on the 6th day is that you want your milk to be in to make sure that baby's body is metabolizing that correctly. Maybe they are saying two just so that they make sure they get one test in for people who might not come back and do it other wise? Oh wait, you already said this about accessibility of newborns in the hospital. Great minds... <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/wink1.gif" style="border:0px solid;" title="wink1"><br><br>
I would be interested in hearing some real reasoning for doing the first test so early. Either way, it sounds like you already know that when the state "requires" something, they are usually just using that word as a shortcut for "we really want you to do this and we are going to make it sound like you have to even though it is your choice". <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> Go with what makes sense to you. The vax forum might have some more info on your state's policies if you need to put up a fight about skipping the first one.
 

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<div>Originally Posted by <strong>Astromom</strong> <a href="/community/forum/post/7284519"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">(BTW, my MW also told me that ALL states require two tests.. but I'm pretty sure I've found evidence that isn't true, so I'm not real confident in this baseline theory either.)</div>
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Oh, missed this part. It is not true that all states require two tests. I've got the official State of CA DHS booklet here and it says nothing about repeating it unless you get a positive.
 

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Discussion Starter · #4 ·
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<div>Originally Posted by <strong>paisley</strong> <a href="/community/forum/post/7284736"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I've got the official State of CA DHS booklet here and it says nothing about repeating it unless you get a positive.</div>
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Cool Paisley, thanks for verifying this! I had found the same thing about CA on the National Newborn Screening and Genetics Resource Center website, but you never know how accurate stuff online is. So that site says that AZ, NM, UT, CO, and a few others have an "initial and second screen required by law on all infants", while most of the other states say something like "required by law on all infants, with a second test required if the initial screen is done prior to [24/48/72] hours." So I can show my MW that to let her know it's NOT required twice in all states.... So now I just need to verify that AZ isn't on the cutting edge of technology, testing for some disorders that actually do require two screenings to be accurate.<br><br>
Nah, I don't think it will be a hassle to decline the initial -- my MW <i>was</i> resistant to me not doing it the "right" way if I'm going to do it at all. But she did say it was up to me. It's a bit distressing to me actually that my MW seems to be a bit misinformed on this. Ah well, I guess when it comes to *any* care provider, it's best to not blindly trust.
 

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<div>Originally Posted by <strong>Astromom</strong> <a href="/community/forum/post/7287126"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">So that site says that AZ, NM, UT, CO, and a few others have an "initial and second screen required by law on all infants", while most of the other states say something like "required by law on all infants, with a second test required if the initial screen is done prior to [24/48/72] hours."</div>
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<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/bag.gif" style="border:0px solid;" title="Bag">: You know what, I just re-read the booklet and it does say toward the end of the paragraph that a second is required if you do the first before 12 hours. The reasoning given is that <12 hour blood is not reliable for some of the tests. I'm so sorry about the mix-up! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/redface.gif" style="border:0px solid;" title="Embarrassment"><br><br>
But what a silly rule that you have to have it redone - wouldn't it make more sense to teach care providers that it must be done after xx hours? I guess we are back to that whole newborn accessibility thing. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/shrug.gif" style="border:0px solid;" title="shrug">
 

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Discussion Starter · #6 ·
no no, paisley, you're good -- it's exactly what I needed to know. The point is that you <i>can</i> do it once if it's done late enough -- my MW is convinced it must be done twice no matter what. And in my state, twice is the law -- but I'm pretty sure it's an accessibility thing -- since they want to make sure the later one (the accurate one) is done. It's a bit tricky to know for sure since all the states do their own thing and test for different disorders -- it's not standardized.
 

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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>Astromom</strong> <a href="/community/forum/post/7287126"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Cool Paisley, thanks for verifying this! I had found the same thing about CA on the National Newborn Screening and Genetics Resource Center website, but you never know how accurate stuff online is. So that site says that AZ, NM, UT, CO, and a few others have an "initial and second screen required by law on all infants", while most of the other states say something like "required by law on all infants, with a second test required if the initial screen is done prior to [24/48/72] hours." So I can show my MW that to let her know it's NOT required twice in all states.... So now I just need to verify that AZ isn't on the cutting edge of technology, testing for some disorders that actually do require two screenings to be accurate.<br><br>
Nah, I don't think it will be a hassle to decline the initial -- my MW <i>was</i> resistant to me not doing it the "right" way if I'm going to do it at all. But she did say it was up to me. It's a bit distressing to me actually that my MW seems to be a bit misinformed on this. Ah well, I guess when it comes to *any* care provider, it's best to not blindly trust.</div>
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Are you having a hb or a hospital birth? Are you in AZ? I know alot of mothers here who just decline the test or say they are having it done at home or at the peds office (the hospital does not need to do it, anyone can do it and send it in). Thats what I did with my hospital birth. For all my hbs its only ever been done once. Usually between 5-7 days ppd. if you are in AZ this might be helpful: <a href="http://www.azdhs.gov/phs/owch/newbrnscrn.htm" target="_blank">http://www.azdhs.gov/phs/owch/newbrnscrn.htm</a>
 

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Discussion Starter · #8 ·
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<div>Originally Posted by <strong>Full Heart</strong> <a href="/community/forum/post/7290110"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">if you are in AZ this might be helpful: <a href="http://www.azdhs.gov/phs/owch/newbrnscrn.htm" target="_blank">http://www.azdhs.gov/phs/owch/newbrnscrn.htm</a></div>
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Yep, I'm in AZ. That site also says that AZ tests twice but doesn't get into why. My MW says the first one (the one done at 24 hours or whatever) is *needed* as a baseline... but I see nothing at this site (or any of the others that I've looked at) to back that up.<br><br>
That's good to know that you know plenty of other AZ moms who just did it once. Now I just need to convince my MW that I'm not crazy for wanting to skip the first one and just do the second one. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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Ok this might help: <a href="http://www.azdhs.gov/phs/owch/pdf/az_nbs_scrn_guide_2003.pdf" target="_blank">http://www.azdhs.gov/phs/owch/pdf/az...guide_2003.pdf</a><br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">In Arizona, a second newborn screen is required for allnewborns. The second screen ensures detection of disorders characterized by metabolite accumulation that could be missed as a result of the first screen being done before accumulation can occur, and of disorders with delayed onset. A routine second screen at the first visit to the primary care physician also assures timely additional results for disorders that may cause rapid onset of symptoms or for which there is a high false positive rate on first screens.</td>
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And of course required does not mean you have to do it. Again its because the babies have to metabolize milk to detect some disorders.<br><br>
And this is from March of Dimes: <a href="http://www.marchofdimes.com/professionals/681_1200.asp" target="_blank">http://www.marchofdimes.com/professionals/681_1200.asp</a><br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">A blood specimen should be taken from every newborn before hospital release, usually at 24 to 48 hours of life. Some of the tests (such as the one for PKU) may not give accurate results, however, if they are done too soon after birth. Because of early hospital discharge, some babies are tested within the first 24 hours of life. Because some cases of PKU can be missed when the test is performed this early, the American Academy of Pediatrics recommends that a repeat specimen be taken 1 to 2 weeks later from infants whose initial test was taken within the first 24 hours of life (6). Some states routinely screen twice in the newborn nursery and again approximately two weeks later. Hearing tests are usually performed before the baby is discharged from the hospital. Babies born outside the hospital should have newborn screening tests done before the seventh day of life</td>
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I hate it thats is so difficult to cut through all the crap and get just the info you need. They say you have to do this but they never say why. And finding out why is like pulling teeth. HTH!
 

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Discussion Starter · #10 ·
Exactly! This and everything else I've seen says the second test (the one when baby is older) is the accurate one... and doing the early one can give negative pos/negs.... I've found nothing that says it makes it <i>scientifically</i> required to do that early one too. It's a policy thing, it has to be. Maybe I'll ask the midwife to show ME the proof that the early one is required in tandem with the second to be accurate...<br><br>
Thanks you guys!
 

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I will also be checking with my doc to see why bother with the first test if it is inaccurate anyway and just do an accurate test 6 days later. Seems redundant and an extra cost! Makes no sense to me. Seems to me the states that "require" it twice only do so "IF" it was performed too early to be a viable test.
 
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