Positive stories of improvement after grommets

[user1468575728]

Hi,

Just over two weeks ago our son had grommets fitted. He is 2.5 years old and we think he has been suffering from bad glue ear for 9 months to a year. He was well behind with his speech, very poor socially and was always playing with his ears.

Since the grommets we have had some great progress. He is constantly babbling and saying new words all the time. For the first time ever he is repeating words that he hears and has started pointing at things like trees when we are out. He is also on the whole much happier, brighter and aware of what is going on around him.

The area we are keenest to see improvements in are his social skills. He has always been very social with his parents and people he knows but with strangers and other kids at nursery he would often act like they weren't there. This isn't surprising considering he has spend nearly 50% of his life living like he had his head under water. Since the grommets there have been some positive signs. He has started to play around other children more whereas before he would usually take himself off to a quiet corner. On a couple of occasions he has babbled to other children which again was unthinkable before the grommets.

So on the whole very positive and I wondered if anybody else has had similar experiences and how long it took before their child started to interact more with other children? We know it has only been 2 weeks and he has made a lot of progress. I admit we are guilty of hoping he will immediately catch up with his peers which isn't realistic. We need to be looking at this over the course of 3-6 months not 2 weeks.

It would be great to hear your positive stories and to help us manage our expectations.

my daughter had glue ear and her receptive language was poor prior to grommets. It remained poor after grommets. to cut a long story short, she has been diagnosed with autism and learning difficulties in the end. it turns out the glue ear has been a bit of a red herring all along the way.

If glue ear us causing the issues, docs and Salt told us that we should expect pretty quick improvements post surgery (which we had with some of her expressive language but not with her receptive).

Thank you for replying coffemachine

How old was your daughter when they diagnosed her and has her receptive language improved with support?

I guess my fear is not the diagnoses of autism it’s that he will never make progress but no one can tell you that

she was diagnosed at 3.5 though we had grommets when she was 2.5 years old.

she is almost 10 and is a totally different child to 7-8 years ago and made lots of progress but she has her challenges and is (and always will be) way behind her peers.

I am not suggesting in any way that your DS has ASD but it is just my experience that lots of issues of hers got blamed on glue ear when it was not. We wasted a lot of time with wait and see.

It's just 2 weeks post grommets.so still early days. I keep everything crossed for you.

That’s great news that she has progressed coffeehouse.

I know you wasn’t suggesting ASD just sharing your experience. It’s good to hear what other people have gone through and where they are now, I find it encouraging. There are some days where I think it couldn’t be ASD and then others where I think it is and the wait and see approach is not helping that.

I have been researching activities that help to improve receptive language and I have started to make my son flash cards of his daily activities so I’m hoping that will help as he seems to learn things visually (will copy and follow instructions/actions of nursery rhymes)

Hi, yes it effected his receptive language loads. Glue ear doesn't just prevent a child from hearing, it creates all sort of weird sound distortions like being under water. When his glue ear was bad our son's receptive language was terrible, partly because of the hearing but also we think because he learnt to ignore his ears and stop listening. The information he was getting through them was just too confusing and disruptive. After grommets we noticed an immediate improvement and his receptive language did improve straight away. It has still been a battle because he has had to learn again and has fallen into plenty of bad habits. At a key point in his development where he should have been learning how to communicate and socialise, he was instead learning not to listen and to focus on what he was doing. We called it his bubble.

He is still infuriating at times because one day he will be extremely responsive with great eye contact then the next he will act as if he can't hear you. A lot of the time this could be because he is just being awkward. Some of the time it might be his ears playing up again. Some of the time he might be in a mood with his sister. It can be very complicated and definitely not straight forward!

This morning for example when dropping off at nursery he just stared ahead eating his breakfast when I was trying to get him to say goodbye. A couple of days before he's saying good night to me and blowing kisses. My point is that it won't necessarily be immediate fantastic improvement. It might take some time and effort on your part to teach him to listen again, and don't be disheartened if he has bad days or if it takes time. There is also more to it than just language. Our son never used to care about anything outside of his bubble and had no pretend play. Now he is mega interested in everything, I can't walk anywhere without him stopping to investigate all the time. He had no pretend play before grommets but now he sits playing with his toys chatting away and narrating. I have no idea what he is talking about most of the time so I'm looking forward to hopefully being able to understand one day. It certainly sounds like fun things are happening! Before grommets his balance was terrible and he couldn't jump. Now he jumps and skips all over the place. So bear in mind that grommets will help in other areas too and they can't learn everything at the same time. So look for improvement in all areas not just in language.

Of course as coffee machine says there is always a chance it could be something else and you can't really rule it out until they are older. In our case we still can't rule it out as he is still so far behind but I just feel that everything that has happened matches his hearing exactly. His problems revolve around social and communication. It drives me crazy but in other areas he is doing fine and has shown a lot of improvements since grommets.

Coffee machine thanks for your comments. Please can I ask was it just communication that was a concern with your daughter or were there other areas as well?

at that 2.5 ish the main concerns were:

• receptive language (this was my biggest worry)
• DD had a few words but would not use them consistently to communicate (e. g.if she wanted a 'drink' - a word she had she would not use it to communicate but rather cry and scream until I had worked it out).

• very repetitive pretend play. play skills were behind

• very short attention span (I know this is a toddler thing but it was that bad that even nursery picked up on it)

• not much interest in other DC. I remember picking her up from nursery and she was always along in a corner pottering along or alone on a trike in the garden

• echolalia (mainly delayed - which I thought was functional speech initially). little did I know back then.

and tantrums meltdowns

other than that she was a happy & smily girl with lots of eye contact and came across as very 'warm' - sorry, don't know how to word it. I didn't know much about ASD back then and didn't think she could have autism because of the way she came across (I thought children would be distant, not having eye contact, not cuddly etc).

Yeh we have some delayed echolalia as well, mostly when he is pretend playing and sometimes if he's distressed. He is developing some of his own speech as well and when his hearing is down he will randomly start signing again. Apparently this can be a perfectly normal part of a child's speech development especially if they are delayed. Like everything it can also be caused by ASD. It's not easy is it!

Hello, just posting the diagnostic criteria for ASD from the DSM-V

In order to meet the criteria you must have all of 3 elements in section A, 2 of 4 elements in section B and tick the box for both C & D

I'm just posting it, not to scare anyone but it might be useful. I think it highlights how one can have many traits but still not the full picture.
I think there has been a high rate of over diagnosis in the past and I hope these changes to the DSM will clear this up. I think it's essential children are assessed by a team and not an individual.
I also think it's important for us here, as hearing problems and the fallout from it can mimic ASD traits hugely

Hope this is a help and not a hindrance!

Thank you oslogirl1 that is really useful

I think there has been a high rate of over diagnosis in the past

I never heard/read this. it is usually claimed that it is the other way around.And given how hard it was and what was involved to get an ASD DX, I really don't think this is the case.

Do you have some links, Oslo?

Hi I'm in Ireland so things are slightly different, and I should have qualified that I meant in the recent past, within the last decade or so, I work in special ed and while prevalence rates have held steady enough internationally - there have been many incidences, in Ireland anyway, where kids have got a diagnosis quickly from an individual private psychologist and within a few years things could look different for the child-
Things are much steadier here now with a team approach to dx- and it is harder to get a diagnosis -sounds like how things have been in uk
That's all I meant - no links to post it was only my opinion

So speech therapy has a 6 month waiting list and the private speech therapist is £70 per hour.
Oslogirl1 I know you work in special ed do you have any advice on activities I can do to build in my sons receptive language?

Most of what a speech therapist does is teach the parents. We were taught to commentate on everything. So if our son picks up a duck we just say "duck". Then over time you build on it so "duck" becomes "yellow duck" etc etc. We've found that seems to have the most success. Then there are various other techniques like putting things out of reach so your child has to ask for them, or putting things in jars so they have to ask you for help to get it out. I don't know if this is too basic for your child or not.

Thank you user1468 we have started to do this, just narrating everyday activities. I was hoping speech therapy would give him 1:1 sessions. Do they not do this anymore?

My sons plays skills have developed and he his nursery have said he is meeting the weekly targets they are setting him and have noticed a big difference since grommets and the bitting has stopped!

He has also started to count to 10, in context and read the numbers. Which I’m really happy about but selfishly I really want to hear the word mummy. Still taking each day as it comes.

This facebook group is quite useful - www.facebook.com/groups/762033967226532/?fref=nf

Having read through the thread I can relate to so many of the behaviours and concerns that I've had and struggled with. My son has had a glue ear diagnosis following a failed hearing test after I took him to the GP with some concerns. He has been referred to see an ENT but its not for another 6 months (8 from the referral) due to long waiting lists.

Has anyone had the same issue? My worry is that it's so long a wait for the initial appointment never mind treatment and if they push a sit and wait approach his development is suffering throughout this.

Has anyone managed to push for an earlier appointment via the nhs?

I couldn't afford private but could maybe fund an assessment but would I be able to get him assessed privately then put onto an nhs list for treatment? Is that even allowed? Or would he need to be assessed on the nhs first?

We are really struggling at the moment and I hate to think of how much worse that will get the longer he struggles to communicate

Hi Belle, I totally understand where you are coming from. We went through this all with the NHS but were lucky enough to be able to go private. I do know from reading other people's comments that if you are persistent with the NHS and loud (but polite) you can sometimes get something earlier. I suppose it depends on the people involved at the NHS and how flexible they are. Regarding a private consultation, most of the consultants who work privately also work in the NHS. I am pretty sure you can pay for a private consultation and afterwards they can put you onto their NHS list for surgery if they think it is needed. You would still need to go through the NHS waiting period for surgery but at least you would get into a consultation much quicker and get some answers. Most private health providers list their consultants on their website so you can do your research in advance to make sure you are seeing the best person.

Bear in mind that 6 months from now will be summer time when glue ear can clear up. So you run the risk of going to ENT, them saying all is fine then the glue ear returning in the winter.

If you are concerned about development my advice if you can afford it is to pay for a private consultation and then if the consultant wants to go ahead with grommets they should be able to put you onto their NHS waiting list.

Thanks user... I've rang the hospital and there are no earlier appointments but she said whenever I have a spare 5 mins call back and I might get lucky.

I've also contact spire as they have a consultant who also works at Alder Hey but they won't even let me pay for an assessment as he is under 3 at the minute. They said their Manchester hospital will but even if I could then go on an nhs waiting list in Manchester I think I would prefer him to have the op at Alder Hey.

In the meantime my health visitor has referred him for Soeech and language therapy and I'll keep trying for an earlier app.

He seems to have learnt New words lately which sometimes makes me wonder if it is improving. But then he still frantically messes with his ears, doesn't communicate very well even with the words he knows and has the worst tantrums ever so who knows.

Hi everyone, sorry for my delay in replying loopyloo but I see OP answered your question!
I’m at such a crossroads.. I just read back over most of this thread and I honestly don’t know where we are at with my gorgeous boy. Grommets out but no fluid build up and hearing was good at last test (may 17). In Montessori/ crèche since September and making progress.. was attending 3 days before xmas and 5 now, I see massive progress in maturity , waiting, sharing etc.
making progress in speech and communication but not huge and still way behind peers (which I don’t mind- I just want to see progress!)
There are still some ASD traits- looking st things out of corner of eye, poor (but improved) eye contact , he’ll now respond quicker to being called, he’ll say the word of the song you leave out etc.. but unless you work to keep his attention with you, he’ll revert back to what he’s doing...
He’ll often look for my help with something but only occasionally look for just my (shared/ joint) attention
We are seeing a cranial osteopath who says there’s still a tightness from his ears and begind his nose etc so she’s working on that .. we tried listening therapy but he won’t leave headphones on! He’s got a good grasp of yes and no and is starting to say them in context.. and correctly

I feel he has some sensory issues, very under responsive- he could take a bad fall and get up without so much of a whimper ...
I’m happy with him in so many ways, but after re reading coffeemachine’s comments I’m afraid glue ear may have been a red herring too and maybe we should properly consider ASD... I’ve been so resistant to it as I was certain it’s all ear based...

I think it's impossible to tell at this point. We're in a similar boat in that our son is making lots of nice progress but still has areas of concern. One thing I have been told by teachers of the deaf is that when the hearing improves it's not like an immediate switch. The brain still needs to adapt and rewire itself. How is your son socially now compared to a couple of years ago?

Also if you are concerned about sensory issues, have you considered seeing an occupational therapist? We saw one a few weeks ago and have just received the report. They will assess sensory needs and give you techniques to help. With the looking out of the corner of his eye thing have you checked eye sight? You never know.

You are so right, it is impossible to tell isn’t it?
OT was on my radar alright, had a private appointment booked in summer but it was cancelled and he was doing so well I never got around to re booking, I will look into that again.

I’m just a bit rattled today as my 12 yr old nephew asked me about him at the weekend and did he have autism as he has “two of the signs” (not talking and not playing with kids!) I’m not sure if he looked it up or where he got it, but I guess i just wondered if he’s thinking it am I ignoring signs to suit myself.

I can totally get on board with ASD but because it was such a fight with his ears have I programmed myself to rule out everything else? And maybe I’m not seeing the wood for the trees... all I want it to be doing right by him and help him in anyway I can - and for a while part of that was protecting him from a mis-diagnosis of something else when hearing was the issue...

Just to add the “not playing with kids” was based on my boy not looking to play with him- my 12 yr old nephew!
He is happy around other kids in crèche but doesn’t necessarily engage them

I think it's a constant battle. Everybody forms an opinion and I admit there are plenty of times where I don't blame people for thinking my son is autistic. At our recent speech therapy appointments he got excited and just ran round and round the room for ages chatting away! I kept telling the speech therapist "I promise he's not like this all the time"! My strong opinion is that he isn't autistic. It just doesn't add up for me. But that doesn't mean I'm right. I think you have to trust your instincts. It's such a complicated situation and glue ear is described as complex hearing loss so really only time will tell.

Another way to think of it is if he was autistic would you treat him any differently? I wouldn't.

So long as he is making progress then I am happy that he will get there in the end. I only get a bit funny about it if people try to label him because I think it's too early for that and we have to give him the chance to catch up in his own time.

I do recommend the OT to assess his sensory needs. We thought our son had sensory needs and the OT has said she thinks he is just delayed in some areas, and bored in others. And this facebook group is good if you want to chat with other people about it (you'll probably get a bit more feedback than this group now)

www.facebook.com/groups/762033967226532/?fref=nf

Thank you!
I feel much better today- especially since he’d a mighty evening. Calling me, using words with requests, he said his numbers , alphabet and colours... not for the first time but I was delighted with him - I needed his reassurance!!

And yes I wouldn’t be treating him any different - and I do feel he needs the wait and see approach for sure- but I guess I worry that if it turns out to be ASD then are we overlooking early intervention options- but as my wise husband reminded me last night- there isn’t any service he needs at the moment that we aren’t pursuing ourselves...

Thanks for this, for starting this thread ( with the right title) and for being a constant support and place to air my innermost worries! I’m sure my husband and family would thank you too, I get to dial the crazy down a bit!

Hi, was just wondering if anyone has any updates on this. I am currently in a similar position to you all. My son had grommets 9 weeks ago we have noticed a lot of differences in him but he doesn’t respond consistently. He had two inconclusive hearing tests after the grommets. When we are talking to him it’s like he can’t hear us and we just don’t know if this is normal and if it just takes time for the hearing to return fully. We are really worried and find there is just not a lot of information on glue ear.