Has anyone had abnormal testing and it be nothing? We are going for further testing. I’m very worried but being told it’s rare and could be a false positive...
Any knowledge on metabolic disorders ? Thanks
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@cake2017: my DS2 had to go for further newborn testing (he had to get blood drawn a second time and then we still had to go to a major children’s hospital and get more blood drawn and a urine sample) and he was fine in the end
and is now a totally normal 2 year old!We too, were told it was probably nothing, especially since my DS1 passed his newborn screening and no one else in our family had those markers/disorders.
The worst part of all of it was getting the urine sample- he actually didn’t pee the whole time we were there, so instead of waiting him out, I took him home with the little bag. Once I had the sample I had to drive it way across town to drop it off at a lab within a specific time frame. He totally slept through the blood draw
Like I said, he was totally fine in the end. I hope for the best for you and your little one!!
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@kce56: @smores: I have to take her to the National Children’s for follow up testing. They said blood draw and urine as well. I’ve been reading what they are testing for and she doesn’t have any of the symptoms. I’m so anxious
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This might not be the same thing but My LO had abnormal thyroid levels on newborn screening that pointed to congenital hypothyroidism. Dr sent us to the hospital for a second blood draw and it turned out to be normal.
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False positives are very common in the newborn screen. In fact in my state (WA) it’s standard to repeat the screen at 2 weeks because it can be so inconsistent. The blood samples are collected on paper and if they get too hot or dried out the enzymes can inactivate and appear to not be present. So follow up testing is important but an initial positive screen is not a diagnosis. What disorder is being tested for?
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My nephew tested positive for a metabolic disorder (not sure which one), per his newborn screens. After a few weeks of feeding him every 2 hours and more tests, it turned out to be a false positive. He’s now a perfectly healthy 2-year-old.
For what it’s worth, my second son’s newborn screens suggested a potential heart defect. He’s also completely fine.
Fingers crossed for you!
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@MenagerieMama: Yea, they said heat will cause false positives. They said they have seen a lot of this-
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@BoyMama: Thank you! Praying all is well.
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I know someone who had a false positive for DS via NIPT. Her follow up amnio was normal and she now has a healthy baby boy.
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Lorelei tested positive twice for phenylketonuria. I was terrified. But after further testing we discovered it was just false positives. I hope you have a similar outcome.
and is now a totally normal 2 year old!Reply
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