Special Needs

Early Intervention/Audiology Testing

Hi, I know I am not the only mom to go through this, I just want to help my son with whatever is available to him. Are there any questions or concerns I should ask/talk about with our Case Manager? Fragile X Syndrome runs on my side of the family (mother's side). My brother has FXS and lives a somewhat normal life. My son doesn't have any physical features of the syndrome. I see his attention span is not totally there and his language is behind. He has an over/under extention to his words, still babbles alot of baby talk that I cannot be decoded. He mumbles words together. I

I also have an appt with Audiology at Pittsburgh's Children's Hospital to get my son's hearing checked. There is no history of ear infections.  We had it checked a week after he turned one last year, and the tests were inconclusive...he wouldn't sit still long enough for them to be done. Now that he is the big two, we are attempting again. I think he is partcially deaf, from the way he has progressed with language and sounds.

Is there any advice you could give me to make our EI & Audiology testing more helpful and beneficial? I don't want to skip a beat if there is something more I can do for my son.

Re: Early Intervention/Audiology Testing

  • My daughter goes to Children's in Pittsburgh, and we love the audiology team there! I don't have much advice. Just make sure he is fed and well-rested. He is probably old enough to play the games they do to test his hearing. Good luck!
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  • If he doesn't do well with booth testing, you may have to do a sedated ABR. Maybe some others can chime in with that process for an older child. Nate's ABR was when he was 6 weeks old, so he just slept through it.

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  • We're you tested for FX as a carrier prior to pg? Has your child been tested? This may be a factor in his ability to successfully access certain testing environments which would rend the results inconclusive.
  • No I wasn't tested. My sister did get tested and she is not a carrier, so the genetics are in essence the same for me, so I should not be a carrier. My brother does have FX. However myself and both my siblings all have A.D.D. I am not sure on how they would Dx that in a two-year old, or if they would. 100% of the problem is his speech and language, I don't really think he has a disorder other than being behind for his age. I have EI intake appt this coming Tuesday, so I am excited to see what they can/will offer for my baby! Thank you ladies for your advice, it was all very useful.
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