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.

This is all so brilliant for me to read. You have all described my son!
He's just gone 2 and we got grommets in last week. He was always happy go lucky, so while he had persistent ear infections he took them well, he was worryingly independent and self sufficient and not too interested in anyone outside of us, taking passing interest in other kids but socially behind his peers. I also wondered about autism but I feel he just doesn't fit the full profile. He babbles away to himself but only a few clear recognisable words.

One week after op and seeing great changes but am glad to hear it will take a few months, guilty of expecting too much too soon! Biggest thing is his happiness...hasn't been pulling at his ears at all which is a huge change.. playing with noisy toys and showing increasingly more interest in people ... and taking me more and more by the hand to things...

I will be interested in following this thread to see how OP sons develops also. The worry has been awful , I'm so glad to be on the right track.

Anyone have any suggestions/ tips on how to bring on language and social skills ...

Hi oslogirl. Our son has just started taking our hand to things the past couple of weeks. It seems a little thing to most people but for us it's the first signs that he is involving us more and more in what he is doing. We tend to play dumb quite a bit to encourage him to use other methods of communication like pointing and actually asking us verbally for what he wants. It's 3 months since he had the grommets and his vocabulary has come on massively. A lot of it comes out in babble which can be quite funny to listen to. The thing that has come on the most is his understanding of what we want him to do. He now understands when it is time to have his nappy changed or when it is time to go upstairs for bath time. He now often cries when we leave him at bed time (which he rarely used to do) and there is lots of "no night mummy no night daddy juice juice juice". His eye contact can still be frustratingly inconsistent but it is way better than it was and improving all the time. He just needs to learn how to listen and how to communicate now he can hear again. He also needs to break a year of bad social habits so as well as learning he needs to be unlearning.

You'll have great days when he does brilliantly and you'll have bad days when he's tired and doesn't seem to do as well. My biggest advice to you is always focus on the positives. We always look at it as two steps forward for every one step back.

You may also find that positive progress at home doesn't immediately transfer to outside of the house. We find our son is now doing brilliantly in his bedroom and with family members he knows well but at nursery or if we go to the park he is not as good. I think this is normal because he is most comfortable at home and there are less distractions.

We have a SALT who has given us methods we can use at home to encourage him. We comment a lot on what he is doing with simple one or two word sentences. As I said above playing dumb is also quite a good one.

Other than that he just needs time! I think it'll be 9 months - a year before we can really start to relax but he'll get there in his own time.

Hi user1468575728
Thanks for update...
We are doing really well here too...he's also bring up by the hand to lots of different places in the house and for different reasons! Tonight he even brought my over a toy just to look at with him! He is occasionally repeating words we say. And like you I also see that he is starting to showing understanding of requests, especially the bath, as unlike other requests he has no visual clues of what I'm talking about yet he goes to stairs and straight to bathroom... it's so wonderful to see... yes good days and what I call "quiet days" rather than bad but all moving in the right direction.
Another big change is his awareness of us when we are out and about. He will stay with us when we go for walks and hold my hand and enjoy it...before- once he was out if buggy he was gone....never looking back, maybe that's just down to maturity but I like to think he enjoys being with us more.

Yes I also see most improvements at home and with those most familiar to him but circle has widened beyond the pair of us to grandparent and relatives. He know looks at everyone one in the room and responds to them..
We have also started receiving calls from the cot and it swells my heart with joy!!!

Thanks for all the advice and tips and keep me updated X

Our son used to just run off in random directions as well. He wouldn't look back and would usually stumble straight into a bush because his balance was so bad! Now he'll walk along with us and is better at holding hands.

It's amazing and so reassuring to see how similar our experiences have been. Thanks so very much for sharing...
I also forgot another huge change- it's the longest we've gone without a trip to doctor since January!!!!

Have you any tips for keeping ears dry in bath, our man loved swimming (which I'm sure compounded the issue so hasn't been since May) so in the bath he never used to tip his head back for hair washing as he doesn't mind it at all. Now that I'm trying to keep ears dry it's not so easy! I used cottonwool balls ...
Thanks

That's why I put this post up in the first place. There's so little help available for this kind of thing and the NHS have been practically useless for it so it is nice to share experiences with others who have been through or are going through the same thing.

He never suffered from ear infections. Our ENT consultant said that there was no need to worry about covering his ears because of this. What we have noticed though is that the day after he has his hair washed his hearing is usually a little worse. It then clears by the next day. He hates having his hair washed and won't let us put anything in or over his ears so one of us gets in the bath with him and holds his head back with our hands over his ears. It's a bit stressful for him but does the job! We took him swimming yesterday and washed his hair in the evening. Today apparently he's not great so I think we'll just have to leave swimming for now because his clarify of hearing is just too important.

If you can get your son to wear a headband then there are some available where you can put putty in the ears like ear plugs and then a headband over the top. I can't remember what it's called but pretty sure you can find it in google pretty quickly.

Oh yes littlegrommets.com... must get them thanks
So was it through hearing concerns that you got grommets?

Does anybody have any information on who would offer grommets for my son who is 2 years, 3 months. I have rang around so many private clinics and been told that they will not operate under the age of 3? Thanks in advance

Hi Chawley32. We were told the same. But most of the private consultants also work on the NHS. In our case we paid privately and saw the consultant at the private hospital but we were then put onto his NHS list and had the grommets fitted by the same consultant at our local NHS hospital. It actually worked out a lot cheaper as well because we didn't have to pay the private hospital costs, only the consultant and other staff. We went through the Nottingham BMI park hospital.

Hi Oslogirl, we got grommets to fix the problem which was hearing but the reason we pushed so hard in the end was because of how profoundly the hearing problem was effecting our son's speech, language and social development.

Really interesting reading everyone's experiences. My dd is 3.3 and has no speech, there are concerns she is on the spectrum due to the lack of communication, responding to name, no pointing etc. She has had 3 inconclusive hearing tests and has been referred to ENT to have an anaesthetic to to the brain stem response (I think), check her ears and possibly insert grommets if they find she has glue ear.

After reading the progress your dc have made I'm hoping it is her hearing that's causing her delays, really encouraging.

How is everyone's little ones with eye contact before and after grommets? Our son's eye contact was very poor when he had bad glue ear. Now it is improving and we have a mixture of great eye contact and very poor eye contact. It's the one thing left that really bothers us. In most other areas such as speech, understanding of what we are asking him, awareness of others he has been making very good progress.

I don't know where to start with the eye contact thing...

I started worrying about my son when he was a few weeks old as he was never interested in my face and from then on he never made eye contact when I was holding him or breast feeding. (the books say they should be gazing at you. never happened!) He would only look at me if he was on his playmat never when he was in my arms. I remember I was having a particularly worrying day when he was about 9 months and I took him shopping, he was in the trolley seat and the whole time in Tesco he only looked at me twice. So he's never been great at it and when he was younger he didn't look at me much, but I will say he's always used it correctly. Such as used eye contact when asking for something or getting my attention and showing me something. Like when we used to build towers together he didn't look at me while playing but when he knocked the tower over and laughed he would look at me to share the joke. So it was quality eye contact but he just didn't do it as much as other toddlers and he cant make close up eye contact.

I would say his eye contact is fine now, we're always interacting so loads of eye contact, but he STILL cant make close up eye contact. He can do it but it makes him uncomfortable and looks out to the side or covers his eyes. He laughs when he does it. I sometimes put him in my lap and pretend hes a baby and sing rockabye baby and then pretend to drop him at the end. But I cant look at him when singing or he'll cover his eyes or look away, he wouldn't be able to look up at me and hold my gaze for more than 2 seconds without feeling uncomfortable and look away again. I asked him the other day why he didn't like looking at mummy close up, was it cause I was blurry or you just don't like it. He said he just doesn't like it.

My opinion is his hearing loss from a baby did affect his overall social development, and how interested he was in interacting with people and that in turn decreased how much he looked at people and held eye contact with them. I think it probably did improve after the grommets settled in as its not even as issue now. I think as his speech increased then the more interaction so the more eye contact. The difference with my son is the whole close up eye contact thing isn't to do with the hearing, I think he's inherited from my side of the family. I don't like eye contact I know the feeling he gets when holding eye contact close up. My dad is terrible at it too, he doesn't even look at customers when speaking to them even though hes the boss. And we're sort of normal so I'm sure hell be fine

Hi sorry I thought I replied to this a few days ago but it must not of sent.

My little man was very good at eye contact at the baby stage but once he got mobile he was always more interested in getting away!
A big mistake we made , and regret, from this early stage was TV, he seemed to really enjoy baby TV and I often had it on, and therefore used to compete with it for his attention, seems so ridiculous to me now as I should have known better. Obviously for the last year it's been off ,lately only on for a few mins here and there.

Still and all in quiet times he would look at us when dressing changing nappies etc

Since op I see a huge improvement for him but he's still below his peers in this regard.

Actually since I wrote that last post we have seen some big improvements. It's gradual but we are noticing that he is giving more and more eye contact. If we sing to him or play games we'll often get brilliant sustained eye contact so we know he isn't avoiding it or uncomfortable with it.

Great _ yes songs and rhymes are a big hit too..especially if I give long pauses _he'll look to me to finish

Also we found playing with things around our faces helped.. putting a box on as a hat... on him and on us, sunglasses etc all objects drawing him face to face as a game... he loves it and as a knock on effect he def looks at us more

How is everyone getting on since? My lil man is 9 wks post op. No ear infections, longest stint since before last Christmas! He nearly has a word for everything although we don't understand them all! Lots of non verbal communication, bringing us by hand etc and lots more eye contact and way more sociable, staying and playing in room/area where people are etc which I realised wouldn't have been the case. Taking more interest in other children, showing me he understands more and more verbal requests, occasionally brings me toys or something to look at, often brings me by the hand to what he is playing with, I think for company as this is different to when he brings me to fix or do something. So all in all everything is going great.. However he is still not putting words with any 'by the hand' stuff. He'll take u somewhere and if you can't read his mind he just whinges. If u prompt with a word he doesn't say yes or no or nod or shake head or anything like that... SALT has said he just needs action words and when he gets verbs hell use them.. ( she's not seeing him til Dec so this was just over phone) So I'll say "WANT weetabix" or whatever I think he's looking for and just hope it kicks in... Was this the case for anyone else or have you any advice?

Just found this thread. DS now aged 6 is on his second lot of grommets. We went privately at 2 years as the delay with the NHS was unacceptable. Prior to the grommets he had been referred to speech and language therapy and his nursery had raised concerns with us about his interaction with adults and other children. I did one of those online early autism assessments and he scored really highly.
Grommets were revolutionary. It took about 6 months but he caught up on speech really quickly. Learning to play took a little longer- although we had to remember that he's the child of 2 introverts so he was always going to be a slow starter!
Now in year 1 at his last parents evening he was described as "hugely popular" and "a very confident speaker"
He had to have a new set at age 4 just before he started school as the glue ear came back, but touch wood he's ok from now. I can't recommend it highly enough. I'm so horrified at the NHS attitude- they even suggested massive hearing aids instead of the op while his ears "sorted themselves out" despite admitting that the impact and effect was often minimal.
We were lucky to have health insurance as I think it was quite expensive though.

Hi,

Our son is now around 4 months since the grommets were inserted and is making really good progress. Sounds similar to you Oslogirl1 in that he does a lot of hand leading, much better eye contact (still patchy but improving), lots more words although we need to be on hand to translate! Socially we are only just at the "noticing other people and children" phase so he has quite a way to go in that respect but considering the fact that before grommets he would act as if nobody else existed that still signifies great progress.

I've read on a couple of posts now that 6 months was a bit of a mile stone and I think that will be about right for us. We imagine that his development was paused when the glue ear got really bad so although he is coming up on his 3rd birthday we imagine that he is more like a 2 year old.

He has some annoying/odd habits which are a legacy from his bad hearing days. For example often he makes what I can only describe as a deaf boy sounds when he is running around or sometimes when he is frustrated. I read that can be a sensory thing. I'm expecting that will slowly die away as his speech and language improves.

Like with whinetasting he ticked a lot of the autism boxes before his grommets were inserted. Now he ticks a lot less. In fact the other day I went to pick him up from nursery and at first I couldn't find him. Then a little boy in an apron who was in with all the other children wandered over and I realised it was him. I had become so used to him sticking out like a sore thumb (playing in the corner by himself, running around making noises, lying under a table) that I hadn't noticed him because he looked so...normal!

The more and more I think about the service we received on the NHS the more and more annoyed I get. Frankly it was disgraceful. They were so dismissive and only ever looked at the data on the day. There was very little consideration of the bigger picture. There are so many questions they should have asked such as "how has his balance been" , "how is the hearing effecting his development" , "how often is he touching his ears". There is no way the "wait and see" approach should have been followed because of the profound impact the glue ear was having on his development. Three months at that age is such a long period of time and it's a really important time in their development. From our first appointment with the NHS to when we finally gave up with them and had the operation privately was around six months. Had we stayed on the NHS I suspect we would still be waiting now. Somewhere there will be an educated professional who will have clear reasons why this is the case and maybe they will prove me wrong. But I feel the service really let my son down. Anyway rant over.

Glad to hear your children are all doing well. I think so long as they are making constant progress then they are doing great.

Lovely to hear about all this progress ... Sounds like he is flying it! I'm in Ireland so while our health service don't officially take the "wait and see" approach, there is a long wait time on the public system. We went private and both gp and ENT both agreed it time was so important at this critical stage for language and communication. I am just so amazed at how similar a child with glue ear and a child with ASD can present at this age, and while we ,as a society, are all more and more aware what to watch for with ASD there is so little out there about what glue ear can look like. ... And the sheer impact it can have on a child's development. We also remind ourselves that he is about 6 months behind with development - it's very evident when I see him with his little cousins and how interactive they are , he's just not there yet. .. But coming along ... I do feel there should be more awareness ... I had to push through to get ears checked... It all moved fast once I got referred from gp but it was all at my suggestion ...

I think the hardest thing about all this is that you have to keep positive. There is no way to know for sure that your child is going to catch up and be OK in a couple of years and the NHS don't seem to have much if any knowledge that can help. Since grommets our DS is making plenty of progress but he is still way behind in many areas. Whereas before he would barely ever respond to anything he now often responds. But I'm still there regularly doing the whole "yogurt or banana...., yogurt.. or.. banana,.... YOGURT OR BANANA" thing! Sometimes he will say what he wants, sometimes he might point or sometimes he will just stare blankly. If somebody with experience said "oh yes don't worry this is normal with a child who has had very bad glue ear" and "he'll be fine in 12 months" then we would relax more. It's that uncertainty that can be hard and can get you down if he is having a day where he is tired and not as good as on other days.

We're still optimistic and I fully believe he will get there in his own time. The things we want him to do now will happen one week, one month, six months down the line. We have to celebrate everything new that he is doing and not worry too much about what he is not yet doing.

It is heartening though to read the experiences of people who have already been through this all and have had similar experiences. That makes a big difference as well.

Hello! I fully agree with your last point and if it's any consolation I feel every bit of it and could have written it exactly myself. Somedays I see lots of improvement and other times I'm standing there with the yogurt and banana too!!!!

Thought things had taken a real step backwards last week, saw all old habits creep back and then discovered goo coming out one ear... Brought to gp and he had an ear infection so was back on antibiotics and I've to wait a week and go back then to see if grommet is still there as ear was too blocked up to see. Presumably it's there and that's how fluid was seeping out but I don't know... I Didn't really think you could get ear infections with grommets in?? It was mad to see the deterioration in his communication once his hearing was down... But it wasn't as bad as originally as there was more eye contact and more attempts to communicate even though he couldn't hear right... And have seen it all improve again since.

I find it hard not to compare him to others of similar age and although I know why he's delayed and I do believe he'll catch up it worry creeps in again....

But it is so lovely to have this thread here to see its not only us!

Our son never had ear infections thankfully. I have read a lot about children with grommets having goo in the ears when they get ear infections so I think it's to be expected.

We had a really good week last week. An explosion of words, a re-emergence of pointing and a big improvement in his general understanding of what we are asking him to do.

He is still very independent. He likes to do his own thing around the house and play with his toys by himself. When it suits him though he will come over to be picked up or for cuddles. Sometimes he will bring something over to show us which is an improvement on never.

I think the independence thing is part personality. I like peace and quiet myself. I think it also has a lot to do with living in his bubble for over a year and learning to do his own thing. I expect that as his language develops and he understands more that he will start to involve us a lot more in what he is doing.

What are other peoples' experiences of this? I would have thought most children with bad glue ear will become quite independent because in a way they are cut off from the outside world by the fluctuating hearing.

How did you find out if your child had an ear glue? Is it visible?Came to this thread by accident was just about to post about DS2 who might be autistic/dealyed/goodness knows what as we are waiting for the appointment.
He's had 2 ear infections and his hearing seems to be ok if I call "biscuit".I'm clutching at straws here but so many of you described your children's symptoms that refer to him-no speech at all,just some gobbligok,no social interaction.I'm at loss what to do except fecking waiting.
Could GP have a look at his ears to determine if they are ok or is it only the specialist? Any help very appreciated.Thank you

Hello!
My gp was able to see that ears were blocked etc and diagnosed ear infections.. When these became frequent she referred him to an ENT who put in grommets as a day case. GP can also refer you to audiologist to measure hearing but this is considered quite unreliable as this age (my son is just 27 months and all this would have been coming to light around 19 months) ... I'm in Ireland so could have waited for public appointment but because he was having so many infections and We felt it was a crucial time for social interaction and language we went private and he was called in about 2 months and grommets inserted a month later. There rest of the frequent posters on this thread are in uk so system is a little different.. From your "fecking" description I think you might be Irish! 😂