Glue Ear - plus potential Autism - 16 month old son Advice

[Thetruth123]

Hi all

Long one so please bear with.

My son is currently 16 months old. Yesterday at an audiology appointment I was advised he has glue ear.

He had been developing amazingly up until 10/11 months he was walking crawling before 10 months.
then around 11 months he started to get a really bad cold and he literally for five months had the thickest green snot coming from his nose constantly coughing constantly whiny. I called the doctors several times and just had telephone conversations due to Covid they only prescribed antibiotics once and they didn’t work in the end I took him to A&E and they advised me he had a severe sinus infection within two days of those antibiotics from the hospital he was perfect but during that time we noticed the speech he had which was only mum dad and Nan he lost. He also used to put his arms over his head and we would say where’s such and such gone and he would put his hand over his head put them down and then would say there he is and he'd really laugh. But since disinfection he is like a different boy and he doesn’t communicate doesn’t point doesn’t gesture doesn’t mimick doesn’t speak. But he also didn’t do this before the infection it’s just the speech that has been affected. So we are now waiting for a referral for glue ear and a referral for potential autism because he doesn’t interact very well he doesn’t sleep very well he doesn’t communicate doesn’t talk he’s funny with foods , doesn’t play ..::.so my mind is all over the place with what is actually wrong with him. And what’s worrying me more is the fact the NHS waiting times are so long and with both issues early intervention especially regarding his speech is Key so we are going down the private route with regards to autism but as it was only yesterday I’ve learnt about the glue ear....it I’ve looked into private ENT doctors and their prices are such shocking up to £3000 just for the operation to have grommets fitted if that’s what would be needed. Do any of you ladies or gents just have any advice you can offer about where to go from here I have contacted my GP who has made the referral to the ENT doctors at the hospital and I have just now requested that my son be classed as an emergency appointment and I also have my health visitor advocating my case thank you ladies much appreciated for any help you can offer xx

 

[OhMyGaad]

Personally I would pay for a private ENT consultation before paying for autism assessment because if he does get a diagnosis the NHS waiting lists are still extensive for OT, SLT etc and it's possible his ear issues are contributing to his communication skills.

At the same time, we are 3 years in waiting for NHS autism assessment (child is 7, referred in nursery/pre-school). I hope you get some guidance. It's hateful how long our children have to wait to be seen. Early intervention seems to be non existent now.

 

[Tree_]

I couldn't say whether your child is autistic either way. But children do go back in their skills. My daughter did around that age. And coupled with being ill. I'd hold off for now. As they could be totally different in 6 months

 

[bubbadabut]

If he's had that bad a sinus infection I would imagine he is adenoidal as well as glue ear. All 3 of my boys have had glue ear and grommets, but the middle one also had to have his adenoids removed and he's had the grommets done twice. He was definitely the worst affected, it all started after a really bad cold, and when I look back at photos of him before his op, you can see how badly it affected him. Dopey looking eyes, mouth open all the time, just that congested look about him. Does your son mouth breathe? That's a clear sign of adenoidal problems. It also affects sleep.

I wouldn't get too wrapped up in the autism thing just yet. He is very young for a diagnosis and the communication problems are more likely being caused by the congestion in his ears. I would want to get that sorted first before considering anything else. Be aware that it's not an instant fix though, every time they get a cold they tend to regress a bit again. That was definitely the case with my son. He is still under ENT now, this is almost 6 years on from his initial glue ear diagnosis and has 6-monthly hearing tests. He has a follow up appointment next week and hopefully he may finally be discharged (though I say that before all his appointments ).

 

[Thetruth123]

Thank you , he does mouth breath ....and he is a terrible sleeper....it’s all starting to make so much sense now! X

If he's had that bad a sinus infection I would imagine he is adenoidal as well as glue ear. All 3 of my boys have had glue ear and grommets, but the middle one also had to have his adenoids removed and he's had the grommets done twice. He was definitely the worst affected, it all started after a really bad cold, and when I look back at photos of him before his op, you can see how badly it affected him. Dopey looking eyes, mouth open all the time, just that congested look about him. Does your son mouth breathe? That's a clear sign of adenoidal problems. It also affects sleep.

I wouldn't get too wrapped up in the autism thing just yet. He is very young for a diagnosis and the communication problems are more likely being caused by the congestion in his ears. I would want to get that sorted first before considering anything else. Be aware that it's not an instant fix though, every time they get a cold they tend to regress a bit again. That was definitely the case with my son. He is still under ENT now, this is almost 6 years on from his initial glue ear diagnosis and has 6-monthly hearing tests. He has a follow up appointment next week and hopefully he may finally be discharged (though I say that before all his appointments ).

 

[bubbadabut]

Thank you , he does mouth breath ....and he is a terrible sleeper....it’s all starting to make so much sense now! X

Definitely adenoidal then, bless him. That wouldn't necessarily be something the GP would've check, but the ENT doc will easily diagnose it by looking up your son's nose. It also causes problems with swallowing so that could explain your son's food issues, and he probably just feels rubbish all the time. If he needs both the adenoids and the grommets doing, it will make him more of a priority for treatment. They are both done in the same op, it's very quick.

 

[TinyDancer2602]

We have been in a similar situation. We paid for a private appointment with an ENT to assess and who then transferred us back over to NHS care for the op. It just meant we weren’t waiting an eternity to get to on to the list. Definitely couldn’t have afforded to pay privately for the op. My daughter had vents put in and adenoids removed. She was later diagnosed with autism. This was not a surprise to us, she was always a bit different. Could never put my finger on it though. Always just something unusual about her.

 

[Thetruth123]

We have been in a similar situation. We paid for a private appointment with an ENT to assess and who then transferred us back over to NHS care for the op. It just meant we weren’t waiting an eternity to get to on to the list. Definitely couldn’t have afforded to pay privately for the op. My daughter had vents put in and adenoids removed. She was later diagnosed with autism. This was not a surprise to us, she was always a bit different. Could never put my finger on it though. Always just something unusual about her.

Thank you for reply ....oh ok so if I do go private to ENT they can refer back to nhs for op then ? Was you waiting long for the op? Xx

 

[bubbadabut]

Thank you for reply ....oh ok so if I do go private to ENT they can refer back to nhs for op then ? Was you waiting long for the op? Xx

Yes, if you don't want to pay for the op, the private ENT will just put you on the NHS waiting list. You may find it's the same doc you see in both cases though, many of them do both private and NHS work.

We were NHS for both referral and op, probably took about 6-8 weeks from seeing the GP to having the op. This was pre-covid though, and having 2 issues (glue ear and adenoids) meant he got bumped up a bit than if he just had glue ear.

 

[TinyDancer2602]

Yeah that’s what we did! My daughter was 3 at the time and speech and language had assessed her as having a severe delay. The ENT said she needed the op and he would put her his list. We didn’t hear anything for a couple of months and I emailed him and basically pleaded with him to give us a date as she was becoming increasingly isolated from other children and it was affecting her development. He put her on the list for the next week. We were very lucky. We are in Northern Ireland for context.