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.

Grommets do fall out unless they are the permanent type (t tube), they may have fallen out or it could just be his cold affecting him. Is he due to have a hearing test soon? You should also contact ENT and see what the consultant says.

DS2 had CMPA, reflux and glue ear! A heavy cold does affect his grommets, he loses the hearing he does have if it’s a particularly heavy cold.

So I took a look and they both look in place, he had them inserted in May and hadn’t really had a cold since. I will email the ENT consultant then. Yetalkshitehen what did you do when your sons hearing went bad again witha cold? Just wait for it to clear or did you have to get drops from the doctors? Also, I wondered what age your son had grommets? And whether you are of the same opinion as me that the CMPA caused the glue ear? Thanks for responding, I’m feeling s bit hopeless, this has held him back so much I’m thinking he’s autistic 😓

I just waited it out, it comes back after he’s cleared up. I do think the CMPA caused or at least contributed to the glue ear and speech delay. DS2 was diagnosed with autism earlier this year.

He was 3.5 when he got the grommets.

So your DS2 has CMPA, reflux, grommets and then diagnosed with autism? I’m being to think that’s the way we are heading! What age did your son receive his diagnosis? How old is he now? And how is he doing?

What symptoms did you son have of ASD? My son has some joint attention, taking turns looking at our faces when we are being silly, but rarely points to anything, response to name was awful before 3wks ago. That’s why I’d wish this cold would shift but now we are coming into winter months doubt it’s gonna be good as he will get frequent colds

Did they take into account he had glue ear when diagnosing?

I was told that glue ear can mimic some of the symptoms of ASD.

For my ds he had severe glue ear, and some signs of ASD in various ways, but he has, for the most part, grown out of both.

Witchend, what symptoms did your son show? Also, did he have grommets inserted? My sons progress has been slow since the grommets. Also what age did your son grow out of the symptoms? I guess I’m wondering if I seek a autism diagnosis sooner or later, see if he grows out of these symptoms? He’s a dreamer, seems in his own world alot

Ds had grommets put in at 20 months, 3.6 years and 6.6years. It's touch and go whether he'll need some more this year (11yo), two years ago they said it looked like he was going to be one of the rare children that never grew out of glue ear, but last year things looked more hopeful.

Symptoms, it's hard to remember looking back. I raised it 3-4 times with both the GP and ENT over reception and year 1. Living in his own world, lack of attention especially in group situation, sensory issues especially round noise, struggling with groups of children.

In year 2 he was clearly improving, and when I went to his first parents' evening in juniors I asked if he was showing any behavioural issues and she looked at me all and said "no" as though I was asking a stupid question.
He's just gone into year 7 and almost all have gone. He still has a few sensory (especially sand) and his concentration isn't brilliant if he doesn't love the subject, but it's not something I worry about any more.

Witchend what a wonderful story!! I really hope my little boys turns out like yours, obviously repeated glue ear isn’t great though off course, the surgery must have been tough (so many times). Do you remember whether at 20months he’s speach just came on? I think I was expecting it to a light switch turning on, but the improvement in concerntration have been there albeit slow and he making more sounds, but still no words, apart from quack and brum brum, and he copies “neigh” for a horse and “moo” for a cow - his words sound off too, maybe that’s from hearing them wrong for so long. I’ve started a private speech therapist, she specialises in hearing impairments but she hasn’t seen anyone as young as him and we struggle getting and keeping his concerntration. I guess that’s where my concern comes back again about a spectrum disorder. Do you remember if your son would point? Wave at 20months etc....

The first thing on the ASC assessment pathway is a hearing test, OP. So it will get sorted out. He has shown you whatever the outcome he will point and respond to you.

Heavy cold aside, he is developing at his own pace and that is good.

Susiejo77 sorry I just saw your reply.

Aye he sure did, he was diagnosed in June when he’d just turned 4 although nursery/ed psych/SALT/ELCAT (our pre 5 learning support) were in agreement for about 18 months before that. My elder two (and me) are autistic too, so that’s possibly why we had earlier involvement.

He’s ok with CMP now (apparently 4 in 5 children outgrow it - maybe less) from about 2.5 he could tolerate small amounts. He still doesn’t have a lot though, he doesn’t like it so I use supplements.

He’s 4.5 now and although his speech came on really well after his grommets, it was only in late August that he really started to fly with his joined up sentences, totally out of the blue.

Still needs SALT because his pronunciation is sometimes hard to understand, especially if you don’t know him well, but he’s on course to join DD at her mainstream school with additional support like she has. DS1 wasn’t able to go to mainstream school, so this is all new to me!

Whenever DS2 has a cold or just feels a bit run down and sniffly I notice a profound difference in his hearing. I almost took him back and asked if his grommets had failed once!

Oh and none of mine waved, lifted arms to be lifted, or pointed at things they wanted.

It hadn’t even occurred to me until I was asked at DS1s assessment so I didn’t know it wasn’t usual.

Glue ear can lead to developmental delays - my DS2 had all kinds of knock-on effects as a result of it. When it was first diagnosed, when he was 18 months old, his speech and development were 10 months behind, but with intensive SALT, grommets and just the passage of time he has, to a large extent, caught up (he's now 7 and just started Year 3). It's a long old road though OP and full of worries. My DS still has problems with focus, concentration, listening, etc, and we're still trying to get to the bottom of it all.

What I would say is be persistent, listen to your instincts, follow up on all NHS referrals, do private SALT if the NHS waiting time is long and you can afford it (we had to wait 8 months from referral to actually starting the NHS SALT sessions, which is an eternity in developmental terms), and read the book 'It Takes Two to Talk', which helps you to find ways to communicate with a DC who has/had hearing problems. With my DS we got to the point where it wasn't that he couldn't hear, it was that he'd never really learned to listen - understanding that and getting his attention before speaking (and getting his teachers to do the same), was a big breakthrough for us.

Sorry - just seen that you are doing private SALT - that's good!

Many thanks for the responses here!

YeTalkShiteHen can I ask what supplements you give you DS2?

That’s good that your DS3 is going to a mainstream school with your DD. How is your DD doing in a mainstream school? Is DS1 is a special needs school? I’m wondering how they determine if mainstream school is suitable for DC.

Juneau, thank you! Your situation sounds very similar to ours! My sons communication is so far dehind also, thinking he’s like a young baby communicatively (just mainly babbling with a couple of words, pronounced funnily) and he has to body of a toddler so it’s really hard to get him to sit still and get him to listen, he gets distracted so easily and it’s so hard to get him to concerntrate and listen. Nursery have seen an improvement though, as before grommets he never sat during circle time and was always off doing his own thing and he does sit down or watch them now, only just now starting to do some of the hand signs to the songs. As you say, I feel like it will be a long road and I’ve never worried so much about anything like this. I will buy that book now, thank you for the recommendation! Can I ask if you remember if your son was talking at all before grommets and whether he started talking quickly after grommets? I’m presuming from your msg it was slow development for you too. Many thanks for this

That’s good that your DS3 is going to a mainstream school with your DD. How is your DD doing in a mainstream school? Is DS1 is a special needs school? I’m wondering how they determine if mainstream school is suitable for DC

She’s doing ok so far (we’re only a few weeks in) and the school we chose (we moved last year for other reasons but chose where based on schools) has a really hot record for ASN and we haven’t been disappointed! She goes to the “nurture room” which is their learning support room, for a part of each day, and is thriving. They’re really supportive and are already liasing with DS2s nursery about an enhanced transition for him next August!

Sadly with DS1 he had a shit nursery, and I was a rookie when it came to knowing what to ask for, so he transitioned to a fantastic support unit attached to mainstream which was wonderful until the council amalgamated 3 schools to create a super campus and it became awful!! He’s now progressed to a fab ASN high school, who are fantastic, but I feel if he’d had the right support previously he wouldn’t be as socially isolated as he is now and that upsets me, because it upsets him.

We’re making progress with clubs and groups, but I do so wish I could go back knowing what I know now and do better by him.

That’s not a reflection on ASN schools at all. They’re wonderful, I just feel that DS1 kind of slipped through the cracks a bit in early years and that’s why he’s never been able to manage mainstream. He was on a path to it right up until the schools changed and a new head came in.

I use these along with the chewy multivitamins

Thanks for the link, I will get those. I’m a rookie too, I feel that because my DS walked early, and being that he’s had the glue ear would play by himself, still does, but he was just left at nursery playing by himself, I have recently been into the nursery with my concerns, but it’s hard when you can’t see or know fully what goes on there, I’d love to be a fly on the wall. Can I ask you what you didn’t differently regarding the nursery with your other two children? Would be good to have some insight so I can do all I can to help DS. I’m presuming external help doesn’t kick until they are older 3ish?

Aye I’d love to be a fly on the wall too!

DD and DS2s nursery is a different one to DS1 (I had to fight for that too!) because there wasn’t a cat in hell’s chance I was putting my other kids through what DS1 and I went through.

The old nursery didn’t listen, were not interested at all in any concerns and told me he was “just bad” and there was “nothing wrong” with him. I did take his DX in when I got it and told them “you’re right. There’s nothing wrong with him, but he is autistic and not bad!”

Aye the external help didn’t kick in until they moved to the 3-5 room (although the toddler room were using coping strategies for autistic children to help them before they moved), we have a meeting bi annually (with all involved) to plan ahead and make sure its all ticking along.

Where are you? I only know procedure for my own area, which seems to differ from many others. If there’s an autism support group locally it might be worth asking some parents there what’s worked best for their children? And be able to tell you the names of the plans and professionals you want to be involved.

Have your nursery been good so far? Do they listen to concerns?

You’re wrong not you’re right!

I’ve been concern since he was 13months old and I realised he wasn’t responding to his name, not gesturing really, then we realised he had glue ear, but in the back of my mind, I still thought ASD might be relevant too still. I have always been clear on my thought with nursery, and they like your nursery have said, we aren’t concerned about him, all child develop at different times, given the glue ear too - they say just give him time. They think I’m mad I think! I’m in South East London. There is special needs nurseries is there? I’ll see if I can find a austitic group to advise me. Think I mainly get a crazy woman look, from nursery and gp’s because of DS age, it’s hard to know how much delay is down to the glue ear - that’s the main problem at the moment. Thanks for the advice. In your DD and DS2 nursery did they know autism was in the family and they taught/communicated with your DD and DS2 in a way that was sympathetic to that? I’m just curious if I need to be doing more and getting external help to go in, vet the nursery would hate that.

Unfortunately brushing off parental concerns seems very much to be the default. It’s a common theme with all the parents I’ve spoken to as well.

There are ASN nurseries, 2 in our area that I know of (although our nursery isn’t, they’re just shit hot).

In your DD and DS2 nursery did they know autism was in the family and they taught/communicated with your DD and DS2 in a way that was sympathetic to that?

They knew DS1 was diagnosed and didn’t dismiss me when I first raised concerns with DS2 because of that I think. DD and I were picked up later, and they expressed surprise but were also really keen to learn about how it presents in females and do extra training, which was brilliant! They’re totally receptive to learning and also working with parents which has been a real boost. They did an enhanced transition for DD to school which was of enormous benefit to her. They were also really open to hearing about strategies we’d put in place at home to calm, or help them cope and did that at nursery too (and we did at home when they found strategies that worked in nursery).

I’m just curious if I need to be doing more and getting external help to go in, vet the nursery would hate that

That’s really worrying, if they wouldn’t be receptive to outside agencies or listening to you. Is moving nursery possible for you?