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Son struggling with cochlea implant processors

Discussion
Posted by ourknight
15/02/21 11:35 AM

Hi,

My son is 2 years old, he had his cochlea implant operation in August 2020 and he's been wearing his processors - with the aid of a band - since October last year.

Like many parents, it was a challenge to get him to wear the processors as he had struggled with hearing aids. But we felt he had adjusted to them as he was showing progress with his speech and communication.

That was until 2/3 weeks ago.

He started to become irritated with them and he would take them off and refuse to put them back on. This was more prominent when he had a tantrum or was upset about something leading to him snatching them off and throwing them on the floor. It was taking a long time to get them on him. He was sharp enough to know when he felt we were going to put them on and put some mechanisms on place (such as sitting on the sofa resting his head so we didn't have space to put them on)

We thought it may have been as his hair was big (no barbers due to lockdown) so we decided to get a trimmer out and cut his hair. Putting the band on was certainly was comfortable but yet he had his moments and would refuse to put it on. We have to give him a long time before he's calm and distracted before we can successfully put it on.

We've tried to introduce him to the earhugs and he likes playing with them to the extent he tries to put them on, but he won't allow us to do so.

It concerned us so we've spoken to his speech therapist and hearing improvement worker to get advice and it was good to get a refresh of what we could do (routines primarily).

Or is it a behaviour change he's experiencing (he's a twin with his sister who has no hearing loss) that children have at this age? He is more unsettled whenever we try to change him for example or if he's fighting over a toy with his sister!

I would really welcome any pointers or reassurance of what the diagnosis could be.

He was doing well we thought with his speech and don't want this to stall his progress.

Thank you

Discussion
Posted by doodlemum93
19/02/21 10:37 AM

Hi ourknight :) It sounds like what your son is going through is a similar phase to what my son went through last summer. My boy is turning 3 soon and has had cochlear implants since March 2019. He wore hearing aids really well and started wearing his processors all waking hours from switch on in a headband. He still wears them in his headband and we still find he pulls this off from time to time, in our experience he does this to get our attention, not because he isn't able to use them (we do ling sound checks etc. and the implants are working).

Two tips I have, which are only from our experience so don't do these if you don't agree with them (!!) are:- 1. If you still sign a bit when he takes them off, we sign 'processors 1st, *something nice e.g. biscuit!* after' Basically sign processors then point to something he wants or sign it and then for 'after' we use the sign next (as my son knows it). My son is an angel when he knows he will get something out of wearing his processors but it's not always the best!! Its like a short term solution ;) Another thing we do is ignore the behaviour when he pulls them off, don't interact etc. just be really boring and sometimes our boy will actively pick up his headband and bring it to us to put back on. Oh and a third tip, which is like last resort, is you could set the tv up with a programme he likes (in our case Paw Patrol!), press pause or turn it off when he's into it and then he'll realise he only gets the tv if he lets you put the processors back on first. Again, probably not a great thing long term but it will help in short term, our ToD actually gave us that tip if you can believe that!!

Really we just used the bribery card because that was the only way we could get them back on at the time. It rarely happens now, he has even just learnt to replace the coils himself so he is showing independence with them now. I really hope you persevere and find a way to get your little one back on track, I am sure you will find a solution that works for you but thought I'd comment to say you aren't alone and I feel your struggle!!

Behaviourally, it could be hearing related and it is something you should let you ToD know or if it is accompanied by him being distressed with the processors on, then it's probably something to raise with your audiologist at the implant centre. Our son showed now reason for taking his processors off during his phase last year, he would be fine one minute and just whip them off the next! Totally strange but he was no different behaviour-wise when they were on or off!!

All the best :)

Discussion
Posted by sue88
20/02/21 08:52 AM

Hi there,

my son is 15 now but I remember having the same problem. He absolutely refused to wear his CI on his ear so I used double sided tape and put it on his shoulder. He was small and I had a long lead for the magnet.  This worked really well. he eventually forgot that it was a point of conflict having it on his ear and then one day we were with the speech therapist and she v gently put it on his ear and that was it!

inthink the fact that time passed and someone else did it helped. I used the fuzzy tape with hooks and  eyes and stuck a bit on his shpilfer and a bit on the processor not perfect but it meant he could hear and he didn't have anything on his ear but the magnet

Discussion
Posted by sue88
20/02/21 08:53 AM

Hi there,

my son is 15 now but I remember having the same problem. He absolutely refused to wear his CI on his ear so I used double sided tape and put it on his shoulder. He was small and I had a long lead for the magnet.  This worked really well. he eventually forgot that it was a point of conflict having it on his ear and then one day we were with the speech therapist and she v gently put it on his ear and that was it!

inthink the fact that time passed and someone else did it helped. I used the fuzzy tape with hooks and  eyes and stuck a bit on his  shoulder and a bit on the processor not perfect but it meant he could hear and he didn't have anything on his head but the magnet

Discussion
Posted by ourknight
26/02/21 02:42 PM

Thank you Sue88 and doodlemum93 for your responses. Speaking to the hearing team was helpful and so was reading your advice.

Thankfully, since then, we've had much better coil-on from him and part of that was to get him involved in the morning. So when he comes down, I normally be working and as soon as I sign for the processors he knows where his new headband is and helps to bring the processors and batteries on the table. So that has helped. And he's not taking them off as regularly as he used to.

I think the cause may have been the headband he was supplied by audiology as it it elastic, once it stretches I think it may have been causing him discomfort. Luckily his new one is non-elastic and seems comfortable. And has pictures of cars and tractors!

We've got an audiology appointment next Friday so expecting to see a drop in his coil-on times but we know why.