Elevated AFP levels/Ataxia Telangiectasia

[mommatj]

It's been a long couple of years for us that I'm sure many of your can relate to, filled with test after test for our 2.5 year old DD who has hypotonia, ataxia, and neurodevelopmental delay.

One of our most recent series of tests performed by our Genetecist has revolved around Ataxia Telangiectasia.

Today we were told that our daughter's "Alpha-1-Feto protein came back mildly elevated (this was a repeat test as it was previously found to be elevated) at 10 ug/L"

We are waiting for the results of the genetic testing to see if this is due to A-T, which can take weeks to months.

Just a couple questions for anyone who may have possibly been through this before:

Does anyone know of any other conditions that can cause an elevated AFP level? Does anyone else have a child who tested with elevated AFP levels?

Does anyone have any experience with A-T or has anyone else gone through the testing/diagnosis process? Did a doctor suspect A-T but it turned out to be something else?

Thanks in advance for any help you can provide. I find the waiting for test results to be the most exhausting part of this entire process.

[by-the-lake]

I could not post after reading. No info you are seeking, but hugs to you

[MN4538]

Hi,

I've only just seen this post and realise it was some years ago..... I am wondering what happened with your daughter.  My 18 month old has the same symptoms that your daughter has, and also an elevated AFP. They are currently testing her for A-T, but said there is a small chance she has this.  Obviously we are devastated.  I am just wondering what happened with you, how is your daughter? Was she diagnosed correctly?