Twins with glue ear, enlarged tonsils, adenoids - one twin with behaviour issues

[deadwitchproject]

Hello, first post here, sorry it's long.

I've read through some of the previous threads on glue ear, adenoids etc and they've been helpful. I have 14 month old twin DS both of whom have been diagnosed with glue ear, enlarged tonsils and possibly enlarged adenoids. They're to undergo a sleep study soon as the ENT suspects sleep apoena in DS2 and maybe in DS1. DS2 has had 3 ear infections that we know of since he was 3 months old. They're both CMPI and I am hoping to do a dairy challenge soon.

DS2's behaviour is terrible. He has pretty much no speech, limited babble, just lots of squawks, growls and very, very loud screams. He also walks on tip toe, flaps his arms and body rocks at night sometimes for up to 2 hours straight. He'll sleep and then get up and body rock again. Occassionally he will body rock for about 20 mins then sleep straight through. He used to body rock during the day but has now stopped. He snores all night and has done so since he was very small. His eye contact is ok and seems to be improving but he doesn't wave. He will clap if pushed to do so. He occassionally laughs out loud for no apparant reason and sometimes does this at night which scared me at first.

I went to the GP as I was/am convinced he may be autistic and I wanted to help him as soon as possible. The GP spoke to the community paediatrician who rightly said it's too early for a diagnoses and that the HV would contact me.

I suppose I'm after some advice or reassurance that, in my situation, there is light at the end of the tunnel (god I hope so I'm absolutely worn out). I'm hoping that when his physical problems are resolved then his behavioural issues will resolve too. Amy I deluding myself?

Thanks for reading.

[DeWe]

My ds has glue ear too. He's now 6yo and on his third set of grommets.

At 3yo, I was concerned about his behaviour. The consultants did say that for some children with glue ear they display behavioural issues similar to those on the autism spectrum.
Now having glue ear does not preclude having autism as well, but after they'd said that, I began to notice that ds' behaviour deteriorated with increase in not being able to hear.
He's now year 2 and mostly fine. He's still a little quirky but a lot of the issues have gone.

[BotBotticelli]

Can't help on the medical/ENT issues but wanted to reassure you that my 16mo DS didn't start waving or clapping until 15mo.

He is now 16mo and still only has one word, mama.

So I would say that in my experience those things can be 'normal' (I don't have any worries about my boy's development).

[sunnyfriday]

tbh, I would push for a referral to the paed (not just GP having a chat with him).

Waiting lists can be very long (we waited several months). If your DS does need help then the sooner get into 'the system' the better.

I have a child with Asd and won't bore you with the absolutly useless service I had from both the GP and the HV.

does your DS understand well or does he also have difficulties understanding? How is his nonverbal communication (pointing etc)? His play? Etc.

might be worth getting a SALT referral sorted (you can self refer - don't bother with GP and HV).

[sunnyfriday]

Oh, and my child had glue ear and initially a lot of issues were blamed on the glue ear. We got grommets - nothing changed. Dx of autism 2 years later.

Glue ear can be a red herring.

As I said, I would insist on a paed referral.

[deadwitchproject]

thanks everyone for the replies.

DeWe - I'm hoping my boy will end up a just little quirky too. The ENT consultant said similar to me about it not being autism but that's not really his field. He said the sleep apnoea is probably responsible for the behavioural issues but I just can't get autism out of my mind.

sunnyfriday - thanks for letting me know about your son and glue ear being a red herring. My DS2 doesn't point but neither does his twin who has no behavioural issues at the moment. When he has done a poo he will come over to me, look at me and lay his head on my lap to let me know. I don't know if that is a sign of anything. I'm driving myself mad looking for signs!

[sunnyfriday]

I would insist on apaed referral. If only to give you reassurance.

have you done the MChat? This is an autism screening tool (nothing to diagnose). It is for toddlers from 16 -30 months. Your boys are not far off - just wait another 2 months and if it flags up anything, then print it out, go back to your GP and insist on referral.

I went to the GP and HV for the first time with concerns when DC was 15 months. We were fobbeb off times abd times again and only referred after the 3rd birthday. At 3.10 he got a dx of autism - and he us on the more severe end, not a high functiining quierky child.

not saying your DC has asd but you have this gut feeling. Follow it up. Do not take no as an answer. GP and HVs know (imo) nothing about asd (Ent consultants from my experience neither).
Good luck

[Jaffacakesareyummy]

We went for hearing aids over grommets - made a big difference, glue cleared around age 6

[deadwitchproject]

Thanks Jaffacakes, I didn't even think of hearing aids as an option. I'll mention it to the doctor.