Grommets for development delayed son

[Susiejo77]

My now 21month old son had grommets inserted and adenoids removed at 17months. A bit of history, my son suffered from severe reflux and then finally we realised he was allergic to cowsmilk, by this point sadly he was food refusing, as soon as the bottle was being made he would fret and refuse to feed, even though he was hungry. I’d stay in attempting to feedhim over 20x a day he’d only except 1oz approx at a time. Anyway, to cut a story short, I’m convinced this reflux and milk allergy caused the buildup of glue ear in his ears, and grade II swilled adenoids. I took my son to the doctors when he was 5/6months old as I thought he couldn’t hear me and the gp looked in his ears and said they looked fine and I put this to the back of my mind. Then again at 8months I remember worrying he was really pulling on his ears, I remember mentioning this to another nct Mum and she reassured me that all the babies are doing that and it’s teething, so again I thought nothing more, although the amount he pulled on his ears stick in my mind. My son then started nursery and was the first and only baby in the baby room to start with, it wasn’t until 11/12months of age when the nursery became busier I would go and pick him up and if he wasn’t in my eye-line and he hadn’t seen me he would not hear me and be in a world of his own. I realised thenthis wasn’t normal and he had a problem. Sadly I have had other delays on my mind with my son, he never seemed interested in gestures, and wasn’t responding to his name. He had grommets finally at 17months old and his adenoids removed, the ENT consultant said he removed thick glue from both ears. After the surgery my son was ill for at least two weeks and then seemed very distracted by everything, he would however come running when I called his name when I’d pick him up from nursery, but really frustratingly he’d still ignore his name ever other time at home and in the car, He might respond 10% of the time, but always when I picked him up from nurery without fail. Very frustrating!! So gradually my son started to do small points to choices of snacks, with prompting, he started to do nursery rhymes hand gestures, wind the bobbin up and clapping to if your happy and you know it, he doesn’t do these on demand though. He still will not wave hello or bye bye, he did however albeit slowly start responding to his name only around 3weeks age 80% of the time, so 3.5months after grommets approx. I’m wondering if this recovery time and whether this time until a name response is ok still? Or whether I should still be worrying about a underlining condition going on? So, just today, my son didn’t respond once to his name, afterbeing soooo responsive - it’s taken me back - he does have a really bad running noise and a cough and cold, he was up in the night until 4am last night. So, I guess I’m wondering if grommets can get blocked? I was thinking they released any fluid? If they are blocked where do I take my son and what should I request is done? Would really appreciate any advice, I miss him responding when I call him, even though I haven’t had it long.

My son is 7 was diagnosed with glue ear around 1 had 3 lots of grommets ( at 1,2,3 ) he still has glue ear and wears hearing aids since 4.5
His speech was seriously effected , he dyne daydreamed ,rarely communicated , friends would talk to him and he would look right through them , for me the turning point was his hearing aids before that his speech never picked up . He was delayed with making friends and reading, and also In turn other subject , he is still slightly behind , but has made so much progress quickly .

YeTalkShiteHen, what an amazing supportive nursery, sounds so good that they did extra training to help your DD, I guess it is more of a mystery with females, so brilliant they did that. I did start looking at child minders - so he had more one to one time, but we couldn’t afford the holidays they take and have no family near by to help us, so my husband said no. I think I will put my concerns in writing again. DS has just moved up class and is in the older baby room now and he seems much happier. He used to do a frustration shake in the old room as they made him sit and wait for the other babies to finish eating their food and he was a fussy eater, so would be stripe in a chair just waiting. The room leader of the new room is much more relaxed and that seems to suit him much better, no frustration shakes for 3weeks. I will keep as much as an eye on what is going on. Thanks for the advice!

We have been massively lucky with this nursery, I shall be very sorry to say goodbye when DS2 leaves in June. They’ve been incredible since day one!

Oh god that sounds awful, your poor boy definitely put it in writing, that legally requires some kind of response from them! If he is diagnosed, then he’s covered under the Equalities Act 2010 and “reasonable adjustments” must be made.

Paranoiamumma thank you for your response!! Poor you having to go through so many grommet surgeries. Presuming your son has hearing aids after the grommets surgeries? I did ask about hearing aids before we had our grommet surgery and I was told it’s hard to do it for babies as it’s hard to know what the accurate frequencies of each hearing aid needed to be. Perhaps I will request hearing aid if he needs further surgeries. Can I ask if you son was talking at all at 1? Did he start talking more after the grommets? And did you see a quick improvement? My DS improvements have been slow, he does still daydream and seems to look through you from time to time, still after the grommets.

Do you remember whether at 20months he’s speech just came on? I think I was expecting it to a light switch turning on

It wasn't light switch by any means. The main thing I noticed was no longer getting ear infections every 2 weeks, so he wasn't ill. He was clearly better after grommets looking back, but it was so gradual at the time, I didn't really notice it.

There were little things I remember after grommets that made me realise how bad he was.

After his 2nd lot he announced in autumn "the leaves didn't crunch last year" and I realised that he couldn't hear it the previous year.

What did come out of it, was when he was tiny he liked to be carried, and if he was talking to me, he'd pat my cheek to turn my head to him. I thought it was just because he was #3 and wanted to make sure he had attention. he stopped doing it and I assumed he'd grown out of it. But then he started again. He did it in ENT just before his 2nd grommet operation and they pointed out he was turning my head so he could lip read. Looking back I realised he stopped doing it just after the 1st grommet op.

He has had speech therapy. It's varied how helpful, as he really didn't like sitting down and doing it. He's still got a couple of sounds not quite right, but mostly fine.
He came home one day in reception very excited to tell me that did I know that "ch" and "sh" were different sounds-he'd always heard them the same. That was one of the reasons he got his 3rd set of grommets

Just seen your last post:
We requested hearing aids instead of his 3rd set of grommets (he had a friend with them and thought it a good idea) but they said he needed grommets as his ear drum was bulging with the pressure (he had a lot of infections and burst ear drums) so would help that too.

Hearing aid after the last surgery , no , babbling ,occasionally grunted , he didn't start talking till 2 and then it was only simple thing like dada but he pronounced it baba and for a long time he was having problems with his phonic sounds , his speech never really improved with the grommets only after the hearing aids and it's taken a long time , he was 7 in July and has just finished having his lesson at school for phonics. He still struggles with speech though just not as noticeable.
My little girls also been diagnosed with glue ear but only one ear so they are not treating it , she also had speech each issues.

susie he had a tiny number of words before he got his grommets, but he was actually quite good at communicating his needs through gesture. DS1 and I always knew exactly what he wanted, because we were with him all the time, so while he struggled massively to communicate with others, he was 'heard' and understood at home, which really helped his confidence.

After he had his grommets fitted we saw a marked improvement, but the main issue then was the difficulty with listening. He still needs to be reminded to listen and often I still feel he's a bit 'away with the fairies', but in terms of his language and vocab he has an age-appropriate level by the time he started school at 4.4 years. The fact that he's a May birthday also didn't help.

Just be a lioness and advocate for him and try and get the diagnostic tests you need, the SALT and then just talk and play games with him. My DS liked the Sookie and Finn www.sookieandfinn.co.uk/ videos too, which were developed to help DC with language acquisition.

Juneau thank you for the link, I will check that out! My son does seem to let DH and I know what he wants needs by going to a cupboard or kitchen work top where something is kept, by reaching up and then making reaching noises and looking over at me, he rarely points. Do you remember your son pointing? I mentioned to our Private ST that I didn’t understand why his gestures where delayed, he’s only just started doing nursery rhymes movements, clapping not on demand and picking to snack choices, although he most still just grabs it, she said the lack of hearing affects gestures too, but I don’t fully understand that, think I read somewhere that that is the difference between indicating ASD and hearing issues. Witchend, I do remember my son pulling my face toward him two when he was sitting on my hip he used to do that, not anymore. I’m incredibly worried about his understanding, DH and I took him for his first football lesson today and he couldn’t even follow basic instructions 😬

YeTalkShiteHen, I’m sorry your DS1 is upset about the social isolation he feels 😓 it’s tough growing up - I hope he finds his feet more socially and I’m feeling like that rookie right now. My husband buried his head, so I’m the one doing everything, I feel like I’m dealing with the weight of the world and I only have 1 baby x

Thank you everyone that has contributed to this feed! It’s wonderful to read all of your experiences! It’s a great support network 🙌

My DS didn't point either OP. He would reach, take us by the hand and lead us, and yes, make that noise that pre-verbal DC make to let you know they want something! It was very effective TBH, so he communicated quite successfully without words. He wasn't good at the nursery rhyme hand movements either. DS1 was like a performing seal in that regard - he'd clap, wave, etc to order - but DS2 absolutely didn't. His lack of hearing for 10 months really delayed his entire development to a degree that, at times, I found terrifying and depressing, and no one seemed able to unpick what was glue-ear-related delay vs. other possible underlying problems. We were literally told to wait and see how he developed and it's only now that he's 7 years old and has completed three years of school that we've been able to get some further testing arranged. He did have a paediatric assessment at 3-years-old though, at which we were told there were no signs of ASD. If you are concerned about possible ASD, you can request, via your GP, to have him assessed at your local children's centre, by an NHS paediatrician.

Oh my goodness, I can completely sympathise Juneau, it’s a terrible feeling isn’t it, I have gone on anti depressants and I’ve been finding the whole worrying, anaylosing everything he does so worrying. Your DS2 sound so similar to my little boy. I know you still have your concerns about your son, it’s s long long time to have concerns on your mind 😓 I really hope your son is ok! What tests will they do now at 7? I read about untreated glue ear causing permanent damage with auditory processing disorder - which of course would effect concerntration, but that can only be diagnosed from 7 🤷🏼‍♀️ Good luck, let us know how you get on! Are his tests soon? I feel like a wreck, I’m consumed by it, my husband is sick of me and weput having another baby on hold, I think the ongoingworry of not knowing really what’s going on for sometime means another baby won’t happen as I’m an older mum. Motherhood, it’s not what I imagined x

Oh re:test, I presume I can’t ask until he is 3? Thanks for the tip! I will def get that test done as soon as humanly possible

If you are really worried now about ASD then I'm sure you could request that your DS sees a paediatrician now, but I want to reassure you that the delays that glue ear causes can make a DC display ASD-like behavioural tics and they can go away over time.

As for my DS, we're concerned about APD and that was suggested to us when he was three, by his SALT, but as you know they won't/can't test for it until at least 7-years-old, so we've been waiting all this time.

Please don't despair! God knows I know it's hard, but if you want to have another DC don't let this put you off. Having had a DC with glue ear you will be hyper-vigilant for it next time around and so will your doctor, so it would be picked up much more quickly. My DS1 had no problems with his ears/hearing at all, which is why I dropped the ball with DS2. I thought he was just a laid-back second DC and wasn't in a hurry to speak, which makes me feel like such an idiot now. But don't let this put you off trying for another baby, if you want one. I'm so sorry to hear you've gone on anti-depressants for this. It honestly could be worse, so much worse, so take a deep breath and don't let this spoil motherhood for you

Thank you Juneau,

Can I ask you if it was just a behavioural Paediatrican your DS saw? It wasn’t the whole ASD diagnosis pathway was it? As I think people wait years on that, did the paediatrician tell you there and then what they thought re: your DS. As soon as he’s 2 I think I can ask to see a behavioural paedatrician so I will def do that.

I have just made a appointment at the GP to see if his grommets have become blocked up since he has this cold, because of the lack of response to his name again.

Juneau, you mentioned ASD- like behavioural tics, do you mean shaking? I never heard that before, my DS has been doing what the GP says is shudder attacks which was brought on from frustration to not being able to hear. He stopped doing these shakes after grommets were fitted for a whole month and then he gradually started doing it again, it is much less frequent then it was though.

I’m sorry you are now concerned about APD, I read they don’t know the cause, but glue ear has been suggested is the cause. It’s terrible if it has caused permanent damage but I did also read that children with it can do fine at school with simple revisions, sitting at the front near the teacher. Has your DS2 school taken this into consideration and are they helping him accordingly? Is there more they can do to help if he does indeed have APD? I’m pleased you are nearly there now your son is 7, what a long time to wait you must have been constantly thinking about it all this time x

I was like you in my thinking about DS, I just thought he was laid back like DH, and he was very active, so just thought he was a bit behind but would get there, then the panick started to set in and now I panic everyday. You are very right though, it could be sooooo much worse, he’s physically healthy and so I need to be more positive and hope for the best outcome for him.

I am scared of a misdiagnosis too I guess deep down. I’ve had so many people say there is no way he is autistic, but I know it is a spectrum and there are so many annoying misconceptions. I’ve even over heard my Motherinlaw tell my DH “don’t let her get him diagnosed autistic” - deep breathe and bite my tongue.

We just saw a normal paediatrician at our local children's centre and she said she couldn't see any signs of anything that concerned her. She also said that if our DS was later diagnosed with something it would, in her opinion, be mild, so that was reassuring.

As for behavioural tics, not shaking, no. Our DS can be quite destructive and can hit, pinch and shove us and break stuff around the house. He also gets words or phrases into his head, some of them total nonsense, which he repeats again and again. This has improved a lot over the past couple of years, but it was particularly bad between the ages of about 3-5 years and nearly drove me to distraction at times.

He also has little understanding of the concept of personal space or appropriate physical contact. He sometimes goes up to other parents in the playground, coaches at rugby or people he barely knows, and touches/shoves/hits them playfully. Getting him to understand that this is inappropriate is hard, even now.

Your fear of misdiagnosis is understandable, but this is what drives the wait-and-see approach, which can be so frustrating. But so many things I was really worried about have improved or resolved on their own over the past four years. So now, at 7, we're left with certain things that could add up to a diagnosis (or not - I have no idea at this point!), but most small DC do annoying or inappropriate things, and many of them have little tics when they are babies/toddlers/pre-schoolers that they lose as they grow up - and that is why there is this reluctance to put a label on any small DC, apart from those who display very obvious behaviours that indicate certain named conditions.

As for my DS's school - they have been great - I'm delighted to say. When he entered Reception we filled out a very detailed form telling them all about his medical history and lack language acquisition, so they were fully informed from the start. There is a query over possible dyslexia, which his Y1 teacher picked up, so she immediately had extra reading/writing support put in place for him - even before she spoke to us at the parents' meeting. For the tests he's having in the next few months I needed his Y2 teacher to fill out some documents for the children's centre and she did so straight away. We've always viewed the school as collaborators with us in helping/educating our DS, and they have been really good about sharing info with us and responding to our concerns.

Thank you so much for the extra info, you have really gone out of your way to advise me. I really hope your sons additional tests go well.

Juneau, Paranoiamumma, witchend and YeTalkShiteHen can I ask you when your potty trained. I’m presuming due to having the glue ear young this delayed understanding of instructions. I’ve been taking DS Jude to private therapist and I think she a bit stuck on what to do with him as his concerntration is so bad and understanding is so limiting. I don’t sopose you remember when your sons understanding started to improve. My son, will understand things like “no” “be careful” “mind your head” he will dunk his head and “come on let’s go”, “ Jude’s turn”, get the ball, fairly simply instructions, if I said to him “ where is daddy” he hasn’t got a clue andwouldnt ever turn and point at daddy. I’m hoping he will finically get recognition for pointing to us, but I’m presuming potty training will be a very long way off.

Any tips you may have on that?

Potty training is hard to judge. DS1 (who is very bright, completely NT), refused to even contemplate potty training, 'big boy pants' or anything else until he was 3.5 years old and DS2 was a newborn. Little sod! But he trained in a week - dry both night and day.

DS2 wanted to start at around 2.5 years old, because nursery friends were doing so and the nursery was encouraging it. It took six months to get him basically dry in the day, but he had wee accidents quite regularly for ages and he's still not dry at night .... aged 7.

Juneau, thank you for all your response’s, I’m hopeful now as my son sounds very similar to you DS2. Can I ask you if your son did eventually start to point to request things or share joint attention. My son still isn’t doing this really, he does point for a choice of snacks or toy at times but not to show me things of interest to him really. I dropped him off st nursery this morning and he never waves good bye to me.

Our current private speech therapist isn’t really working, it’s in a clinic room in her house and he gets distracted by the new surroundings, 4 sessions so far and we have made no progress as it’s hard to get his attention for long enough. Just wondering Juneau, did you do private ST? You mentioned intensive ST, did you do this at your home? Thinking I need to find an alternative solution, it’s costing a fortune and no results, I don’t know if I’m being unrealistic, but will ask the ST how she thinks it’s going at the beginning of next session - as I’m feeling so worried at lack of progress currently

We had similar issues with our private SALT. She did sessions at her house and DS2's behaviour every week was mortifying. She struggled (and I could see her frustration), to get him to engage with any of the activities she had planned in a meaningful way. DS2 became very over-excited, silly and I just wanted to cry most weeks, because seeing him like that (and thus through her eyes), I could see why she was so concerned. Having said that, when I tried the games and exercises with him afterwards at home, where he was much calmer, I found they were really helpful. And the tips she gave me for getting him to sit still (the wobbly cushion, for instance), were good. Funnily enough, we didn't notice the same bad behaviour when we started NHS SALT sessions, which were held in a sort of 'doctor's office' setting in a municipal building. For some reason, those sessions always went MUCH better. That therapist had a lovely, calm manner about her too (where the private woman was more high energy), so I think that was a factor too.

DS2 did eventually start to point - yes - he was delayed by about 10 months initially so we had to wait an extra 10 months for him to acquire the skills - but he did get there in the end. And actually, once we were doing SALT and I was using the techniques in 'It Takes Two to Talk' I found that his development accelerated, until by the time he started school he wasn't really distinguishable from the other summer-born DC in his class. Comparing him to his cousin, who was born in Oct, but is in the same school year, would be very depressing, but DS2 was born in May, so for comparison I look at other May-born boys from that year and in most respects now he's caught up.

Oh thank you, I’m so relieved I’m not the only one that has gone through this, I feel desperate to help him, but he’s so full of energy and distracted by everything. Today she manage to get his attention for 2minutes, like you say he seems to concerntrate better at home. Can I ask what a wobble cushion is? Sitting still is definitely a problem for DS and I have to hold him, which obviously I can’t really do by myself at home. Thx for all the info, I’ve ordered that book!