Positive newborn screening - Parents of ALD Ne...

Parents of ALD Newborns

Positive newborn screening

Mbarrera profile image
8 Replies

My daughters newborn screening came back positive for ALD and we are currently waiting to see a neurologist. I have a son who was October 2017 is there a way I can find out when Texas started testing for ALD? I know we’ll be discussing testing my other children with the neurologist but it would put my mind at ease if I could find out somehow if he was tested then or not.

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Mbarrera profile image
Mbarrera
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8 Replies
SongStream profile image
SongStream

It looks like it was the beginning of September this year: kxan.com/news/health/it-too...

Mbarrera profile image
Mbarrera in reply to SongStream

It was definitely sooner than this month bc my daughter was born in August. I was hoping it would have been within the last 2 years but it doesn’t seem that way.

Bunnyjen101 profile image
Bunnyjen101

You could try asking his Primary md to order a Long Chain Fatty Acid test. With boys if they are positive that will usually show high. Might put your mind at ease while you go through the process.

AussieBob profile image
AussieBobModerator

Where do you live

Mbarrera profile image
Mbarrera in reply to AussieBob

Texas

francesbd profile image
francesbd

Texas started testing on August 5, 2019. I live in Texas as well - please feel free to message me if you’d like to connect. I’m sorry you are having to go through this.

fightald profile image
fightaldPartner

You really need to set up an appointment with a genetic counselor who can help you determine who else in your family needs to be tested.

ElisaS profile image
ElisaSModerator

Texas started recently - so I would recommend getting him tested.

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