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Grommets for development delayed son

59 replies

Susiejo77 · 11/09/2018 22:12

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.

OP posts:
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juneau · 28/09/2018 11:38

This is a wobbly cushion. For some reason it stops them fidgeting and sliding off their chair, because it wobbles them around and they have to focus on staying still!

www.amazon.co.uk/PhysioRoom-Junior-Stability-Wobble-Cushion/dp/B0057EQILE/ref=pd_lpo_vtph_364_bs_lp_tr_img_1?psc=1&_encoding=UTF8&tag=mumsnetforum-21&refRID=R6ZZ2CVXE4PASH1M38ZT

Susiejo77 · 28/09/2018 16:31

Juneau can I ask how often your DS2 had private speech therapy? Also did you keep going with the private ST once the nhs kicked in?

OP posts:
juneau · 28/09/2018 18:38

I think it was every week (or maybe every two weeks?) and yes, we continued with the private, because IIRC we only had about eight sessions on the NHS. It was such a shame, because a) he really like the NHS therapist and b) he made real progress with her. But, as with all things NHS, provision is rationed and we were only given a few sessions.

Susiejo77 · 06/10/2018 07:39

We have out 2yr developmental check coming up with the health visitor soon. Obviously my son will fail this, apparently questions like, “where is the light? Or where is teddy?” My DS has limited understanding so far, he is only just picking out his own shoes now when I pick him up from nursery, but I’m thinking this is more routine led understanding rather than him actually understanding. Apparently another question is with a toy tea set “ can you make a cup of tea” - we’ll firstly we don’t have a tea set, the only imaginary play DS does is drive cars along anything, but it does seem like he is driving them along a road. Just wondering what the outcome of this 2year check is likely to be when the child has had persistent glue ear young and has development delays possible due to that? I read, that if the don’t pass the chat test, it is carried out a month later, we’ll i doubt his understanding and listening will have improved that much in a month, it is coming up for 5months since the grommets and as I’ve said whilst we have seen improvements they have been slow.

OP posts:
Susiejo77 · 06/10/2018 07:44

Just thought I’d add, DS has only just now started to do near pointing inside books, he seems to enjoy it when he points to the animal in the book and I say the word, he is yet to point to the correct animal though when I say”where is the cat?” I think he did get lucky a couple of times. Hopefully these small steps will all start helping his understanding, listening skills, and then he will start to develop language!! 🤞🤞

OP posts:
MarDon · 10/01/2020 06:56

Dear Susiejo77, I am really hoping to hear from you. I am in exactly the same boat with my son of 22 months. Had grommets surgery three weeks ago and the sudden switch that everyone reports never happenned. He only responds to his name like 10%, I feel like it even got worse after surgery. Only a handful of words, very bad eye contact, doesnt involve us in play etc. My heart sank again and I am now again stressed about autism.. Could you let me know how your son is doing? Did he catch up and was he ever diagnosed with autism?? All the doctors dont want to do anything as they put it to glue ear, but we cant get any help without a diagnosis.

Thanks so much, I am really keen for your reply

ThePithyStork · 06/05/2024 06:40

Hi mardon, any update?
my son is due for grommets so haven’t had them yet but displays some autistic signs aswell but not sure if will improve after the grommets

Witchend · 06/05/2024 12:33

I thought I'd update from my comments in 2018 to say ds was diagnosed with ADHD and ASD in 2021.

He had grown out of many of the symptoms, but he was going to a school thing at 5am, and the teacher talked to 19 children who stood still and listened... and ds who hopped round the group the entire time.

I took him to the GP in March 2020 and asked for referral for ADHD.
Long story short: The initial assessment said not ADHD but look at ASD. He had the ASD assessment and they told me he was right on the border line and they had to decide whether he was "NT with ASD traits" or "diagnosed with ASD". They decided he was just over the threshold and diagnosed him - and immediately wanted to recheck if he had ADHD. They made the same comments (different assessors) about him being right on the boundary, but again they diagnosed him.

Now firstly I want to reassure people. He's still my quirky little chap. At 16yo he wouldn't appreciate that comment. 🤣 He even gave me a hug yesterday and his eye contact is good.
He has a lovely group of friends, he got reasonable GCSEs and is doing A-levels. He does various things outside school and is doing well.

The diagnosis helped him in several ways: it helped his self-esteem. He said he now knew he wasn't the "naughty boy" but his brain worked differently. It also meant that this opened access to other things. For example, he now uses a laptop including for exams. If things are not right at school, I can involve the SENCO, and she's great at fighting corners.
It's also given him "permission" to say when things are hard for him. he still doesn't touch sand, but will tell people comfortable that he has sensory issues with it. If he's going out and feeling vulnerable (like meeting new people) he'll wear a hoodie and pull the hood right up. He can look like a bit of a thug, but that's his barrier against the world; once he's comfortable, then it comes down. These things he would have just masked through (well the sand was always an issue!) with others.

What I would say looking back, is that in some ways I wished I'd pushed right back in year R. But I'm not sure he would have got a diagnosis then. And I don't think I'd have gone back and asked again. I think it's a hard one, because I think certainly top end of juniors might have been a bit better for him, but actually he's not done too badly. He probably would have been achieving a little better because it was a little late, but he's happy, so that's the main thing.

My advice for @ThePithyStork would be get the grommets. Don't expect an amazing change-you may get one, but a lot it's small things. Note down now any behaviours, frequency etc that worry you. After he's had the grommets in a month, then do another diary and see if things have changed. Don't let him know you've done that though.
For ds he also had the issue that he was a summer boy. "He's a summer boy, he'll grow out of it" I think I heard until he was 8 or 9. To my mind that's one of the reasons summer boys do worse - they're excused so they don't have the expectation nor intervention needed.

And remember, whether he has ASD or not, he's still your little boy. ASD is a label to help you (and others) understand him, not something that once is attached causes the behaviour. I hope that makes sense.

But keep monitoring. I'd stopped thinking ds had ASD/ADHD from about age 8, and it was only when I saw him with his peers I realised it wasn't right. And don't be afraid to go back to school or your GP (I was quite lucky in timing, lockdown actually made it easier rather than harder) and push for assessment if you feel at any point, including into the distance.

ThePithyStork · 06/05/2024 14:14

Thank you so much for your reply, he sounds like a good kid❤️

I find I have so much trouble with my son he was completely fine until I started noticing around 18 months - losing some words and development kind of slowed but at the same time he got diagnosed with epilepsy and type one diabetes soon after his first birthday so he virtually spent the whole year in hospital in the end as he kept getting so sick and having seizures every couple of days. In his mri back in June it noted fluid on the ears but I didn’t think much of it till we started speech this Feb and when going for the hearing test he still had the fluid which links up to when he stopped developing as many words and responding to his name as much.

I find it so hard to tell whether it’s asd, the fluid, the seizures (now controlled) or even his meds 😔I feel the main things are his speech and lack of joint attention doesn’t point (he claps, waves and blows kisses) he says a few words like ta, bye bye etc maybe around 50 but not mum or dad. He doesn’t seem to be interested in his peers not sure if it’s an age thing though and doesn’t really do pretend play, he likes to stack blocks, shape sorter, ring stacker etc the same sort of toys. I feel he seems more like an 18months old but again they said he would be delayed from the year he had last year. I’m struggling so much with the unknown I guess and I feel I’m grieving what he was like not knowing what the future hold

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