Auditory Neuropathy Spectrum Disorder

Now there’s a blast from the past.

When we started this blog, we did so for largely cathartic reasons. Our heads were spinning and we had no idea where to turn. There was so much disparate information on the internet, so many different opinions that, for our benefit alone, it made sense to pull it all together in one place. In doing so, it seems we have managed, in some small way, to help some others who are going through what Alice and we went through. It certainly feels good.

This got me thinking. When Alice started her journey this was all about ANSD, or AN/AD as it was back then. We found out everything we possibly could about the ‘condition’ and through a bit of luck and no lack of determination, we had the chance to talk to some of the world’s leading authorities about it.

And now Alice has two new ears. ANSD seems something in the past. Granted, we still need to be aware of it as, even with her CIs, there is no guarantee that she doesn’t still have fluctuating hearing. That said, she seems to be progressing well.

I guess this is the crux of it. Now she has CIs, much like any other child with more ‘traditional’ forms of hearing loss, her issues are the same. In some senses, she now has a new ‘condition’ to be dealt with – and that condition is the limitation of her technology.

There are days – and believe me there are many of them – when life seems….well, normal. Bar having to clamp a whole load of electronics to Alice’s head every morning, we go about our daily lives with very little thought to her specific needs. I wonder if this is the right thing to do? We are so ‘AV’ in everything we do now that, in some senses, Alice is receiving constant input and ‘therapy’ without us thinking about it.

Is normality a good thing?

I guess Alice will never be ‘normal’ in that respect, but to us, because of her technology, her wonderous determination and the help we have had along the way from AV, life is just that……normal.

I think that’s where we wanted to get to. Does this mean we are winning?

Alice has adjusted to CI number two remarkably well. She wears it every day without complaint and is showing signs of responding well to her Lings with it. She is progressing through her maps quickly and the terror of her surgery seems a long time ago now. School is now finished for the summer and Alice will be going into proper school next term (reception). She now has her school uniform and, even if I do say so myself, looks beautiful. She is so excited and so are we.

To anyone else on this journey, particularly if you ar just starting out and wondering if your life will ever be the same again, Alice is testament to that. She is my wonderful daughter who has got through this because of who she is – an amazing young lady. Life, for now at least, feels pretty normal and ANSD………….well what was it all about anyway….

Alice the 'Big Girl'

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2 responses

  1. hi,
    i am so happy for you but unlike you i might be starting my journey. i have a 5 1/2 year old son who has been misdiagnosed on a number of occassions. but last year when he took ABR at 3 different places they said he was from mild to moderate hearing impaired. but the speech therapists are all adamant that he can hear perfectly since he has no trouble in recognising and pronouncing s, f, r, w sounds and words. yet he is extremely language delayed. also i have noticed that he finds difficult to comprehend even words he knows perfectly well when said as a part of a sentence. secondly he has trouble decifering speech/words in sentences.moreover he loses comprehension of speech completely when there is background noise. last but not least, in a quiet environment he even whisper talks to me. does that sound like your daghter’s symptoms? i have just come across the term ANSD and whatever material i have read seems too familiar.still, best wishes for u and ur daughter.

    • Hi. We were lucky that Alice was diagnosed conclusively so young. Her only symptom, per se, was that she hadn’t developed any speech by the age of 18 months. Whilst her behavioural tests were always inconclusive, her ABRs were completely absent.

      I’m not really expert enough to start diagnosing problems, but I guess there is no reason your son couldn’t have ANSD. Where abouts in the world are you and I might be able to point you in the direction of a local expert?

      Chris

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