In a message dated 10/30/00 7:20:07 PM Pacific Standard Time, [log in to unmask]
writes:

<<Carla wrote: I am not sure of the accuracy of this information but when I
questioned the
 same topic at my hospital I was told that the PKU test  may be invalid but
 that there are multiple tests for other inborn errors of metabolism that are
 valid and results of which are needed as quickly as possible if they should
 turn out to be positive.  >>


Varies from state to state depending on how they run the testing and various
factors.  This came up several months back on the mw list and was a
fascinating thread.  For most states, the optimal time for testing was 48-72
hours.  Having the test done then will allow time to treat anything that
comes up in the screen.  It is true that some test results will be valid when
done very early and that others won't....regardless, doing the test at 48-72
will allow you to catch and 'treat' anything that does come up.

Elisheva wrote:
<<a) though the hospital is required to test even if discharge is in less
than 24 hours>>

Yup, though as with any other hospital procedure, it can be declined.

<< the tests for inborn errors of metabolism will be invalid and
therefore need to be repeated later in the week>>

Some are invalid, some aren't....

<< and that b) the parents are
entitled to decline the first test, especially if they know they are going
to have the poor baby re-stuck the next day anyway>>

I agree with it in theory.  We did just (in the last yr) have a baby in
atlanta die of galactosemia.  Parents refused first test, had second test
done - the details (which of course are key here) are escaping me now - at
the peds office.  Test results were delayed for some reason.....also,
supposedly, there were definitely some red flags that were missed by the ped.
 As I'm recalling it, baby had died by the time test results were in.

Alot of things had to go wrong for this to happen of course...I think there
was a delay in getting the test to the lab, then a wkend delay in processing,
then a mail problem...a bunch of things went wrong.

But what I'm getting at, is that if parents are going to refuse the test at
<48 hours, then baby needs to go in at 72 to have the test done - for some
reason, the parents in the above scenario thought it was okay to wait till 14
days.

When the homebirth clients transport, we talk to them about all of the things
that they'll encounter wrt nb procedures: "pku", eye treatment, glucose and
bili counts, vit k, hep b.   The hospital staff here has a tendency to play
the broken record "it's a state law, you have to do it" when the parents
request the forms to waive one of the procedures.  they'll say it 2, 3 or 4
times until the parents get rather loud "I know my rights!  I can refuse any
of the procedures.  Please bring me the waiver form now."

Our clients who have transported or transferred basically refuse all of the
above, an occasional client will do vit k...we simply stress to them why
48-72 hours is the optimal period of time for the metabolic screen, and as
well explain why the hospital staff will be more insistent about this
particular procedure than all of the others.

i wish I had more info for you....we just really work to educate ppl on why
the hospital does it the way that they do,  other ways to do it, the
importance *of* doing it (many of our clients are totally interested in
refusing everything w/o being aware of what they're refusing or why).

katherine in atl
who's daughter never did have the metabolic screen after *three* horrific
tries on three different dates...nurses weren't able to get enough blood....

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