Positive newborn screening

[Mbarrera]

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.

[SongStream]

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

[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]

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 Moderator]

Where do you live

[Mbarrera in reply to AussieBob]

Texas

[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 Partner]

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 Moderator]

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