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.

Just a bit of late night thinking/worrying!

Does any of your children engage any sensory type things? I might have said before but my little boy used to tap things (completely stopped once grommets were inserted) he used to look at his hands a lot, now he still does , but significantly less now- it's very very easy to stop him doing it- I don't mean that i would try to stop him but if I interrupted him it's no big deal- so I feel it's nothing compulsive, if he has something in his hand he doesn't do, if he's looking at a book, if he's relaxing etc.... and it's lessening in frequency as language and social skills increase. Sometimes he seems to be looking at light and shadow a bit intently. Not all the time but it's something I've noticed also.
I know some of these things can be features of ASD but I also know they don't necessarily indicate it- one cuckoo doesn't make a summer and all that!!!
But I'm just wondering if any of you see anything like this with your children- and any difference before or after grommets...

Thanks in advance!

Our son does loads of sensory things that come and go with his hearing. When his hearing is bad, or even just a bit off he runs around a lot more, he cocks his head to one side sometimes and has a noise he makes. We spoke to a hearing expert who says he will be making the noise because it gives him pleasure to hear it when everything else doesn't sound right. We always know a couple of days before he is getting a cold because these behaviours start to occur more frequently.

All of these behaviours greatly diminished when he had his grommets in and was cold free. He would go from running around making this noise to sitting nicely playing with his toys and generally being more social. At this point eye contact, verbal etc would all be much much better.

As always I look at the timelines. If something comes and goes with his hearing then it is logical to assume that it is caused by his hearing. If it is constant and hearing seems to make no difference then it is logical to assume that it is not caused by hearing.

I hope that helps a bit. I would say that as long as these things are fading away as he continues to develop then you should try not to worry. Even if they're not I don't think they sound like something to worry about. Like you said yourself one cuckoo doesn't make a summer and most perfectly normal kids do all sorts of weird things when they are young!

Hi all,
How is everyone getting on?
We'd our first visit to audiologist today.
She checked grommets and said one is out of place but ear was ok- (just finished antibiotic for infection in same ear) .. checked inner ear (same test as newborn screening) and he passed... but behavioural hearing test was inconclusive - he certainly didn't respond to lower frequencies at all but she didn't get to finish as he lost interest and she said she couldn't take his lack of response as hearing issues or loss of concentration - she recommends we come back in a month or two. Would have loved the full picture but happy with how thorough it all seems

My DD (5) had severe glue ear since birth. Aged 2, she finally got grommets. The results were immediate, in that she suddenly reacted to the kettle boiling, cars passing etc. She'd been so deaf, she couldn't even locate a mobile phone ringing on the sofa next to her. BUT it took a long time for language to catch up. I'd say it only just has now. She didn't have access to SALT because I moved with work every 6 months, so I did the therapy with her instead. She never babbled, went straight into talking, but it was slow. And she certainly still doesn't understand outsiders as well as she understands me. She's being assessed for Auditory Processing Disorder on Monday, as she's struggling following instructions in class. She's fine if there's a visual back-up - ie lip reading, pictures, hand gestures etc - but not so good if she has to rely solely on the voice. Apparently because her brain had no access to speech for 2 crucial years, there's a good possibility that it hasn't wired up to process language as fast as other children. She definitely needs time to process each sentence and can quickly get lost in rapid conversation. But it was definitely the right thing to do.

Hi everyone, we're having a tough time at the moment. I mentioned in January that one of the grommets had fallen out. The results of this is that we have moved backward over the last two months and a lot of the sensory issues such as hyperactivity, tilting of the head and spinning have all gradually come back. When he tilts his head it is towards the ear where there is no grommet. Balance is also terrible again so he's falling around all over the place.

Thankfully we have an appointment at the hospital in a week to put a new grommet in the ear without one. That should deal with the odd sensations and then hopefully the sensory issues will go away again. We only had 6 months with both grommets in but were very happy with how he was doing before one fell out.

We've also been given a baha softband for him. It's a conductive hearing aid on a headband so gets around the fact that he won't play ball in the hearing tests. It means that if his hearing fluctuates with colds even when he has grommets then we can use the baha band to give him consistency of hearing. The only problem at the moment is getting him to wear it because you can image how hard this is with a toddler.

I do often think about how the brain wires itself up in early years and how hearing loss affects that. We'll have to keep an eye on that.

We're also going to start looking at food intolerances to try and cut out the glue at the source.

Hi all,

Mynd, thanks for sharing - hope assessment went well?

user1468575728- that's a lot to be going on, it's very frustrating when you see hearing go down and everything else halts .., I hope you got the appointment and grommets are back in. The headband sounds really interesting - a great reassurance..if he'll wear it!

I know it's such an important time for their brains and development and all that but take solice in the fact that we've found the issue and are addressing it- and while frustratingly we might have to readdress and feel like we r taking one step forward and 3 back at times we just have to keep on moving ...

Actually the baha band has been fantastic. Within 2-3 days of wearing it everything we lost when the grommet fell out came back. We had the grommet replaced yesterday so we will carry on as we were and use the baha band if we think he is suffering and that his hearing has taken a dip. This should deal with the problems of inconsistency and we hope that we can now look forward to some fun months ahead. The one downside..... terrible twos have now arrived a year early!

We are riding out the first ear infection since grommets.
She woke up last week with discharge from one ear and GP gave antibiotics.

She seems ok so far, language developing nicely but still miles behind where her sister was at the same age. But we had the 2y review and health visitor said she was on target

Hi hope you are all well...

user1468575728 hope things are going well since you got grommets back in??

Was one grommet out enough to cause your little man big problems? We have one out of place and while he's fine... the level of progress isn't huge.. certainly not as much happening as did first few months and weeks where there was some new significant progress noted every week (except when he had infections)
I feel audiologist left us a bit in limbo- left grommet is out of place but that day there was no build up of fluid- but he'd just finished a anti biotic for same so she said that could be why... left us with an inconclusive result and to make an appointment to come back in a few months.... but in the meantime??!

I think I will try it source another audiologist...

Plus I didn't get anything from SALT to be working on as she referred us on to team..

Do you have things to be working on from the SALT?

Should I go back to ENT and see what he thinks about the grommet that's out of place?

What would you do?

Thanks in advance

Hi,

Yes having one grommet out caused him a lot of problems. We are very happy now he has two in again and are seeing some great progress again. With just one he went backwards. I think it depends if you have a problem with the glue returning. With our son, he has a problem with constant congestion which we think might be linked to a food intolerance or allergy. As soon as the grommet fell out, all the glue was sucked back into his ear. In theory if you don't have a problem with glue then having one in one out may not matter but if you have glue then it will definitely cause problems.

We had the tests done at audiology and they were pretty non-committal on whether there was glue. Apparently it was "within normal limits". But after the surgery the consultant told us there was a lot of fluid and it will definitely have been causing problems.

If you are confident that he is not doing as well with only one then my advice is to call audiology and get another appointment booked ASAP. Waiting months (again) will not help. Their hearing is so important and they need consistency.

If you are getting nowhere on the NHS then you could try going private. You tend to get a more honest non-biased opinion that way. The NHS is very driven by watchful waiting.

You know your child best. If you think something isn't quite right then you are probably right.

Hi Oslogirl, did you get the grommet replaced?

I remember in an earlier post you said your health visitor wanted to get an autism assessment. Are they still pressing this? We've got the same thing now. I'm convinced he's not autistic but because problems from autism and glue ear are so similar I find I am constantly having to explain this to health professionals. He's continued to make really good progress with the grommets but he has so far to come and has also turned into quite a complicated little man. As well as the hearing loss and associated delays we now also have attention seeking (both positive and negative) and selective hearing when he doesn't want to do something. All of his red flags are social and communication based. Nothing to do with routine, rigid thought, no lining things up, no over the top tantrums etc etc. Everything can be tied back to the hearing loss. There seems to be very little understanding on the NHS as to how complicated hearing loss can effect development.

Hi user..

Went for 2nd audiologist app and one grommet is out of place but they were satisfied there was no build up of fluid, said unless we have a couple more infections they didn't currently see the need for a replacement.

Still waiting to be called for assessment for ASD... but as time goes on I am convinced any issues he does present with are linked to hearing and resulting speech delay-

Like you I don't see ANY rigidity in thought and he shows zero resistance to change / changes in routine big or small (and I've tested him!!!)
All he does do is look at his hands, some days a lot, some days hardly at all, and if you interfere he doesn't mind (actually he is hardly ever upset)
He does like things that spin and he can be slow to respond to being called...

That's what SALT referred him for and none of those things are pervasive, I think the looking hands stuff is ususual alright but it isn't like stimming - it has lessened over time and he doesn't do it all the time, in every situation- I don't see it as serving a function for him- like I don't think it's something he HAS to do iykwim

As confident as I am he doesn't have ASD I am also certain that some professionals will think that he does, and I'm certain, like you, I will have it explain myself at every junction and provide them with the information regarding glue ear and the impact it can have on a child's social interaction

I am awaiting a private assessment with a SALT who is qualified in sensory integration as he may have an undersenstive auditory processing system -and Ive also asked we be seen by a private OT who I know is good on subtleties/ complexities of different things....

In my field of work I do feel there is an over diagnosis of ASD which is very harmful because as soon as parents are given diagnosis they can parent differently and it can become a self fulfilling prophecy ---( of course if a child has autism everyone must adapt to this and respond to it to best meet the needs of the child) but ASD supports are not needed and counter productive to a developing child without it ..

Some cases of ASD are clear cut and straightforward but otherwise I am very sceptical of anyone throwing out labels to young children ESPECIALLY when there are clearly other factors (hearing) at play.

I sound very confident now don't I?!!! 😅

I really do feel if our sons had ASD we would have other big pervasive issues impeding on us all living normal lives as a family ... and if I am wrong and someone shows me that is he indeed on the spectrum then I think that's fine too as he seems to functioning very well and it's not severely impacting on him???

Otherwise his speech and language is slowly coming on, he will occasionally repeat and copy, I see big improvements in his receptive language. He is showing me that he understands more of what I say. He is making lots of eye contact with us all (extended family also) and I can play with him with ease. He loves cuddles and affection. I catch him watching his little sister a lot and smiling.
I'd love to see a bit more language coming but I'm very hopeful that it will..and I look forward to our appointments and see if anyone can shed more light on him... in the meantime I am actively working on trying not to worry and enjoy these precious times with these lovely small people!!!!

Hi user1468575728 and everyone else!!

Off topic but can I ask you about toilet training , not sure exactly of your sons age but is it something you have attempted? I can't get my head around how best to approach it with limited language ? Maybe we shouldn't yet? Any thoughts

Not there yet! We've discussed it with his health visitor and nursery who agree that trying to train now would do more harm than good. I think the plan is to wait until he starts showing awareness that he has done something, or that he is about to do something, then start then. But right now he just doesn't have the level of communication skills or maturity. Nursery are sitting him on the potty after his nappy has been taken off which is helping him get used to the potty, and yesterday he randomly took some tissue off the table and pretended to wipe his backside (must have watched the other kids at nursery doing this) so I think that is quite a good idea. We should really be doing it at home as well but are rushed off our feet chasing after his sister at the same time.

Hi,

3 months since last post. How is everyone doing?

We're making good progress. Still a long way to go but noticing subtle improvements all the time. His pretend play, his interactions with us and how interested he is in the world around him is the biggest development recently. He is also talking loads, but we have problems because we can't understand much of what he says. We haven't yet gotten to the bottom of why this is.... so lots of terrible two tantrums and frustration.

One grommet is out again! But it is not causing him as much problems as before, I think because we have cut dairy and also sugar from his diet. Fingers crossed for the winter as we have no plans yet to replace it before the other one comes out.

The battle against ASD and health visitors continues although we are starting to move away from that. I feel that if we can get to the bottom of why his speech is so hard to understand then we will solve a lot of problems.

Has anybody else had problems with very unclear speech in a child who has had problems with glue ear? I don't just mean words that don't sound right, I mean whole sentences where we might just about be able to pick out one word and take a guess at what he means.

I was told with ds that glue ear behaviour can mimic ASD so they wouldn't be prepared to look at that until he was clearish of glue ear. And for ds it proved, he's pretty much "grown out" of the behaviours that were worrying.
His speech was never too bad though. Certain sounds, yes, but he was by far the least clear at school.

Hi Witchend. I definitely agree with the growing out of behaviours. That's what we are seeing at the moment. We just need to get over this hurdle of speech because when we tune into him he lights up, but too often no body can understand him so he gives up trying to a certain extent. He's 4 in a couple of months so has a year before school. It's a year since his first grommets so actually he hasn't had that long to learn to talk properly. It may be he just needs time.

Hello everyone!
So both grommets are out but hearing/ fluid levels seem good ( also off dairy here and definitely helps I think- he tested as dairy intolerant over the summer)
He started Montessori this month and we've noticed a huge leap in his interactiveness and response to being called.
He's watching what's going on a lot more between us and his little sister (whose language is off the charts btw - she's benefited from all the work we do with him!)
He has many word distortions- and I'm only finding out more and more eg boosh is fish , atar for guitar and boot-tush is toothbrush etc - it makes me wonder if he's been saying more but because we didn't respond he lost motivation??
He is quite laid back and will always choose the non verbal 'way out' rather than talking so we have to work hard to create opportunities for him to speak - put toys out of reach - don't offer snacks-- and wait wait wait for him to initiate

Still on waiting list for assessment but a trusted friend who is a SALT saw him over the summer and said there are traits that some will call ASD, and the visual supports will help him learn but she too notes that he's no resistance to change, no issue with routine etc, no unusual order to his play... so that leaves communication issues and a few visual sensory quirks- which may or may not be enough to meet criteria--- either way I'm not too bothered as , for us, once his speech comes on there are no other problems .. but we will see how things are when we are eventually seen (I don't mind the delay as I think time is helping him) there is progress all the time.. small steps!

Thinking about attempting toilet training in next little while..

We had our first clear ear test last week as well. One grommet in, one out but on the side where it is out the ear is nice and healthy. We think he has some congestion there because we can notice subtle changes in his behaviour, but nothing anywhere near as bad as it was. We think that even with grommets, before we changed his diet he still had some problems with his ears. Since we changed his diet he has really come on.

He is now interested in everything going on around him. It's like he didn't realise there was a world outside of his glue ear bubble. We took him to a children's theme park at the weekend and I'm pretty sure it was the best day of his life! He has now also finally decided to start pointing which is great although we often have no idea what it is he is pointing at as it is accompanied by gibberish!

He is still very bad at socialising with other children. I think that's the main thing that bothers us at the moment. He sees them as more of an annoyance than anything else and is very unhappy if they try and play with toys around him. He thinks that all toys in view are his and nobody elses.... Taking turns on slides etc brings out major tantrums. Hopefully as his speech and language improves he will learn that other children can be as much fun as adults. Also waiting for things... he won't do it! He wants everything straight away which was a problem when queuing at the theme park and is a major annoyance at breakfast time.

Basically from what I have been reading he shows a lot of the behaviour problems common in terrible twos. But he's the size of a 4 year old. So it's hard work but much better from the bad glue ear days where he wouldn't even notice if we walked into his bedroom and jumped around the room.

His little sister is a brilliant talker too. She has benefited from the free and constant speech therapy!

Hi Everyone,

It’s been great reading through your posts as I’m going through the same thing now with my son who is 2.5.

My son was born with a submucous cleft palate and has had glue ear since birth. Unfortunately the consultants choose the wait and watch approach which has caused significant development delays in speech and communication. My son has very few words, does not follow instruction, does not always answer to his name and does no pretend play (but will help load the washing mashine and dryer and will brush the floor and feed me and baby sibling) He communicates with me by pulling me towards what he wants, occasionally pointing if he can’t reach what he wants and bringing me object like his juice bottle if he was thirsty. He loves cars and enjoys driving them around the house and will line them up and push them along in a line. He loves playing with balls and will engage in a game of catch with me. However his favourite thing is nursery rhymes and will do all the actions and will want us to join in.

Because of his cleft pallet he has always seen a speech therapist once every 6-8 months to determine if the cleft is making his speech nasal sounding, but as he does not speak she cannot assess. At 2 years old she finally agreed to refer me to a pead after saying he had a 12 month delay (moderate) in speech and language. It took a while for the appointment to come through and like some of you the pead is suggesting ASD although she thinks it’s too early to diagnose. Her main concern is he doesn’t answer to his name and has little eye contact. She is going to review him again in 6 months time.

In the last few weeks he started pre school and the teacher there said he is very social and affectionate but has tried to bite on a number of occasions where she said he got frustrated so is currently receiving 1:1 support.

After pleading with the audiologist after another failed hearing test and persistent glue on both ears since birth she finally referred me to ENT. The consultant was great and agreed grommets should have been done a long time ago as hearing levels can fluctuate day by day with glue ear so even hearing tests every 3 months won’t pick up the severity of it (my son did not have tests every 3 months either as there was always a huge waiting list)

He had his grommets in both ears 4 days ago and seems happier and is babbling more. I’m eager to find out if any of your little ones had very limited speech before grommets and are now talking, even if it’s a little. Also those who were having ASD assessments how did they turn out and do they take the hearing into consideration?

I feel like I should have acted sooner and demanded grommets a lot earlier. I’m praying that they will make a difference and I know I need to be patient as he still needs to ‘learn’ how to talk so I’m taking each day as it comes but I can’t help but lay awake at night at worry.

Hi,
Our son was saying a few words before his glue ear got really bad. After that he babbled but didn't say much. He had grommets at 2.5 and will be 4 next month. He talks constantly now although we can't understand a lot of it, probably because he learnt to say a lot when his hearing was really bad. From what I've read on here every child is different. Some learn to talk quickly, others like our son take longer. I think it depends on the severity of the glue ear and where they are in their development when it hits. In our case it hit at the worst time when he was supposed to be learning key social and language skills.

Regarding ASD, it seems silly of the paediatrician to suggest an assessment because he won't respond to his name. If he has a problem with glue ear his listening abilities and skill will be very poor. Our son wouldn't respond to his name but now he is much better. He still ignores us a lot of the time but that is normal. Our son's eye contact was terrible when his hearing was bad. It has taken time to bring it back and although it is still not great it it much better and continues to improve.

Ahhh biting. Yes we know all about that! An indication of frustration I'm afraid and something that should go away in time.

Can't comment on ASD assessments. We're staying well away from anything like that at the moment. Glue ear and ASD can present in very similar ways so we want plenty of time for our son to benefit from clear hearing. We'll have another look when he is 5 but I don't think it will be necessary so long as his ears stay clear.

Hope this helps a bit. I know how stressful it can be. The main thing to remember is that once they have grommets they still need time to learn. It's not necessarily an overnight fix and can be more about continuous small steps than a small number of big leaps. I'd also recommend cutting out dairy if you haven't already as should reduce the glue.

I totally agree with OP above. We too had glue ear through key learning period- persistent silent ear infections from about 9 months until 2- when we got grommets. He is just 3 now and both grommets out now but hearing is good -he is literally only consistently responding to name now- like literally in last month- he needed and still needs to re learn every sound and social skill again.

I'm also holding off on ASD assessments as the longer he goes the less likely I consider it- his language and communication are his only issues so once they continue to progress we are happy to hold off ...I reckon if he was assessed a year ago an ASD diagnosis would have been highly likely -and now it seems less likely to me- although I may still have a battle on my hands- I'm ok with him receiving diagnosis if he needs it and it's warranted but I fear the overlap in how glue ear and ASD presents at this age is too big and there is much too much over diagnosis of ASD for my liking... time will tell

Thank you both for replying, it’s reassuring to know your little ones are making improvements and that I’m not the only one who is going through this.

It has been 1 week now since the operation and my son seems a lot happier in himself and has started to babble more. He has started to respond to his name when I call him, not every time but more than before.

I had not heard about cutting out diary to help glue ear but it defiantly something I’m going to try.

We instantly noticed how happy he was after op, and he immediately stopped pulling at his ears, which then made me see how often he had been doing that... he has had 2-3 ear infections in the year since but we had been having1-2 a month so it was a welcome decrease--- whether it coincidence or not he's had none since we cut dairy... they say it will take about 6 weeks to notice any difference in cutting dairy...

Just wanted to provide an update.,.

It’s coming up to two weeks post grommets and my sons pre school have said he is making great progress. His responding to his name almost all of the time and has good eye contact. Yay!

I have another question, did glue ear seem to affect any of your little ones receptive language? My son understands some commands but not all. The pre school have not brought this up and the pead didn’t comment on it but it is one of my biggest worries.