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NBS changes

Last post 04-29-2009 2:29 PM by Brlnbabies. 7 replies.
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  • 04-23-2009 11:56 AM

    • midwifea
    • Top 10 Contributor
    • Joined on 02-12-2009
    • Kailua Kona, HI
    • Posts 475

    NBS changes

    I have just been dialoguing with the head of our state newborn screening program. The timing recommendation for NBS on term infants with no immediate concerns is now changing to 24 to 48 hours rather than 48 hours to 6 days, due to fatty acid oxidation disorders and their relation to SIDS or SUDI.

    Just wondering if any of you, practicing in other states, are seeing the same changes in NBS policy?

    Blessings,
    April
    moderator

    "The Voice

    There is a voice inside of you
    That whispers all day long,
    "I feel this is right for me,
    I know that this is wrong."
    No teacher, preacher, parent, friend
    Or wise man can decide
    What's right for you--just listen to
    The voice that speaks inside."
    — Shel Silverstein
  • 04-24-2009 4:43 AM In reply to

    Re: NBS changes

     Yes, here in Florida we're supposed to collect wihin 24 hours.

  • 04-26-2009 9:28 AM In reply to

    • midwifea
    • Top 10 Contributor
    • Joined on 02-12-2009
    • Kailua Kona, HI
    • Posts 475

    Re: NBS changes

    Really Colleen,

    I was taught never before 24 hours, too many false positives.  The old rule was after the milk came in but before 1 week.   Now the recommend is after 24 hours but before 48.  I'll have to research some other states.  Here in Hawaii we test for 29 disorders, including cystic fibrosis.  What about FL?

    Blessings,
    April
    moderator

    "The Voice

    There is a voice inside of you
    That whispers all day long,
    "I feel this is right for me,
    I know that this is wrong."
    No teacher, preacher, parent, friend
    Or wise man can decide
    What's right for you--just listen to
    The voice that speaks inside."
    — Shel Silverstein
  • 04-26-2009 2:39 PM In reply to

    Re: NBS changes

     Zoinks, I mean within 24-48 hours. Not enough sleep here, I had 5 births this week. Hardly anyone actually collects on day one or two, though, most of folks collect at the 3-4 day visit. We test for 36 disorders in Florida.

  • 04-26-2009 10:07 PM In reply to

    Re: NBS changes

     usually day 2 from memory.  Just bumped it up from the standard (i guess) 7 disorders to about 35.  They cover 2 pages when listed.  So far i've had one baby with hypothyroid that's been picked up, but my brothers kids are carrier for CF, we've lost a cousin's toddler to CF and another brother has congential adrenal gland hyperplasia, so i have no issue with the testing.

  • 04-26-2009 10:31 PM In reply to

    • midwifea
    • Top 10 Contributor
    • Joined on 02-12-2009
    • Kailua Kona, HI
    • Posts 475

    Re: NBS changes

    I have no issue with the testing either.  Had one baby who was diagnosed with CAH 5 years back.  I find it to be a valuable source of information without putting anything into the baby.

    It's just, in my state, FOD, fatty acid oxidation disorders, have been responsible for the death of a few babies, who were diagnosed at autopsy.  It was originally thought they were SIDS (sudden infant death syndrome) cases or SUDI (sudden unexplained death of infants) cases.  Because false negatives occur for FOD when a babe is well fed it is now recommended that screening be done after 24 hours but before 48.  I have always waited a few days, till the milk was in, to do the screening, but now I am in the process of changing my practices for NBS.

    Blessings,
    April
    moderator

    "The Voice

    There is a voice inside of you
    That whispers all day long,
    "I feel this is right for me,
    I know that this is wrong."
    No teacher, preacher, parent, friend
    Or wise man can decide
    What's right for you--just listen to
    The voice that speaks inside."
    — Shel Silverstein
  • 04-29-2009 11:16 AM In reply to

    Re: NBS changes

     ...so, what happened to the guideline that said it wasn't accurate until the day after the milk comes in? Does this mean now they will need two screenings? It doesn't make sense to me. If it tests how they metabolize certain enzymes in the milk, which aren't there in the colostrium. are we changing methods of discovery or trading dxing some errors of metabolism over others?

    Scratching my head,

    Marlene

  • 04-29-2009 2:29 PM In reply to

    Re: NBS changes

    I just want to pop in and say we are so glad to have you back, Marlene!  We've been looking for you.  Welcome home!!

    Susan
    Moderator

    I get up every morning determined to both change the world and have one hell of a good time. Sometimes this makes planning my day difficult. --E.B. White
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