another PKU screening question

[Bmorefarmgirl]

has anyone gotten just one PKU/metabolic screening test for their baby?

i have been really reading (well, googling) this because i want to do the screening, but the method of administering the screening seems to be a bit haphazard. everyone has their own theory of how to do it and how many times to do it, and it all seems to stem from trying to get as many babies to get the test as possible, not from trying to get the most accurate results as possible.

we are looking for a pediatrician and we met with a nurse practitioner yesterday. i emailed her today to ask about the test and whether we have to do it twice. i asked a few other questions and outlined what i had read. her response was, "Great to meet you! The first one is a baseline so we repeat it at 1 month." that is it. seriously. not another word except "hello" and "sincerely."

first of all, nothing that i have read says to repeat the test at one month. it says to repeat at one week. and none of it says anything about a baseline either.

so what is going on here? was this just her way of saying "do it our way"? or is there some baseline that i have not read about for one of the other 31 things they test for besides pku?

[nashvillemidwife]

In Tennessee we only do one, between 24-48 hours.

[LaffNowCryLater]

I've given birth in TN and in VA and they have only done one. I think they will do another more specific test only if something comes up.

[moaningminny]

They only do one here, and the baby must be at least 24 hours old.

[Peppamint]

We only do one here... a minimum of 48 hours old but usually at 3 days old. I've only had to redo a test because it was invalid once, in the middle of summer, so most likely it was affected by heat.

You might check the MD state website... I know Indiana has a specific page on the Newborn Screening with all the recommended details... ie. the lab wants samples done at 2-3 days etc. Good place to get it directly from the source.

[*MamaJen*]

We only did one in Texas. I can't remember if it was at 3 days or at 7 days.

[terrabella]

We've only ever had to do one 5 dot on our kids. Within the first 24 hours.

And the last two of ours didn't even take. The first one, we were told that there wasn't enough blood on them (totally untrue, btw). By the time the lab told our FP this, she told us it really wasn't worth re-testing at this point, because it was too late, in the sense that we would have already seen physical signs of a problem, if there was one present. ()

The most recent time, the lab lost it. My midwife asked if we wanted to resend. After I hesitated in answering, while I weighed it out, she spoke up and said that she didn't think it was necessary to do it again.

[Bmorefarmgirl]

thank you all! i am just feeling so frustrated trying to find information and getting a different answer every time i ask a question. i am feeling pretty overwhelmed. but you all have helped me a lot. i found the state's website, and there is a phone # there to contact them. i am going to call them and ask them about the test as well. thank you!