Nervous about grommets for ASD toddler

[2boysandadog9]

DS, 2.7 dx ASD, was referred for grommets in January. He had glue ear at his private hearing test last June when we first started investigating for ASD, he would not cooperate for the NHS test in November (long wait for that appointment!) and in January when they finally got him to cooperate he had glue ear again.

I am certain he can hear well enough but does go through long periods of not seeming to hear sounds he previously noticed consistently - like the front door opening or certain music he likes. He is forever bunged up, but has never appeared to be in pain or have an infection.

His surgery is scheduled for the end of May and I had a call from the nurse to discuss ways in which they could make it easier for DS on the day and what to expect (sensory room, sedatives if we want, ways to administer the anaesthetic). It was all a bit scary tbh and the idea of general anesthetic is freaking me out..

I am 100% sure the ASD dx is correct, and I know his severe receptive/expressive speech issues are due to this, so now I'm not sure if I should go ahead with the operation as I doubt it will make huge differences to his language development..... but then if I don't I will always wonder if it could have helped.

Did anyone's little ones with ASD have grommets? Did it make a difference?

[LongDivision]

I'm nervous about GA, too, so have avoided it for DS. Has he tried an Otovent? Also, I've been told that another alternative to surgery these days is a hearing aid. It's worth asking. I'd also read about cutting out dairy (not that I am a doctor!) as this may help..

[coffeemachine]

DD had it at 2.5.

she also had (and still has - she is 9 now) severely delayed/disordered speech.

we had grommets for 2 reasons - to improve hearing and hopefully help with the speech and language development - well, this did not work. glue ear was indeed a red herring for us.

But, DD also had constants ear infections which went hand in hand with high temperatures. lots of pain in her ears (rubbing ears all the time). and grommets made a massive difference to her in that respect.

whilst it did not improve the speech and language issues, DD was far healthier afterwards and a much happier child.

we did it as a day case and DD was back at nursery 2 days later.

[2boysandadog9]

longdivision - I did look into Otovent but I have serious doubts DS would be able to do it and hates things on his head - hats etc so I think a hearing aid would be a struggle.

Coffeemachine - the reason I am considering not doing it is because health wise he hasn't had many issues, he can be cranky sometimes and has had a temperature for what seems like no reason (could be ear related?) but it's always just a day here and there every few months...
I am not expecting any magical changes with his language development, but we are getting some vocal imitation now and perhaps if he can hear more clearly it will help with articulation.
I guess it is a fast and common procedure, and if it could help it's probably worth it....

[blaeberry]

My ds (ASD though we didn't know at the time) had grommets age two. The procedure was quite straight forward and ds coped well. He had been passing his hearing tests but not the tympanography (glue ear). This makes a difference to the quality of sound they hear which is important for speech. Ds had delayed/disordered speech. It certainly wasn't a miracle cure (still struggling five years later) but he did start vocalising a lot more immediately after the operation.

I also had them when I was five but only remember dreaming that tiny fat nurses were bouncing about on my bed, that when I woke up I wanted ice cream, and the ward was an old Victorian-style one with a part-height divider down the centre of the room which had men on one side, children on the other and a shared TV lounge .

[2boysandadog9]

Thanks for your post blaeberry, DS is the same in that the tympanography was flat. He didn't pass the hearing test exactly and only responded to sounds over a certain level but this could be due to his innattention as opposed to true hearing loss.
He does often respond to sound, especially if the motivation is there so I know he can hear, but I think it may be a bit muffled. Also the vocal sounds he does make are quite nasal, sort of how a hearing impaired person talks (sorry if that is awkwardly worded, no offence intended!)

I know it will not lead to him talking sentences overnight! But I do hope that it will be one less thing that adds to his difficulties. It's great to hear you felt there was some benefits, however small, with DS any little achievement or step of progress is welcomed!!

Your memory of the operation is hilarious!!!

[Buscake]

My boy has asd and is 2yrs2months. He is getting grommets put in next week. I'd like to think it will help with his hearing and speech (zero speech, not even babbling), but I'm not getting my hopes up. I guess I hope it will help him feel less isolated and just make one facet of his life slightly easier. I told the nurse at the pre-op assessment that he has asd, she said due to his age and asd he should be the first to get the op on the day, and also that they would make adjustments like letting me wait outside surgery to be with him when he wakes up. Basically try to minimise the additional stress he will have because of changes to the routine and being in a strange place etc. I'll let you know how it goes if you like

[dimples76]

My son (not diagnosed ASD but has global developmental delay and some sensory issues ..) is due to get grommets the week after next. He has had four previous operations under GA (testes).

I think being the first on the list is the best thing you can get it - the stress (yours and the child's) is so much worse when you're waiting around. Gas has always worked best for us as GA - it's not pleasant but over v quickly. When we were in for the last teste op the nurse said that children bounce back v quickly after grommets procedure.

[2boysandadog9]

Buscake - if you can let me know how it's goes that would be fantastic! We had the same conversation with the nurse and they said he should be first... hopefully.
dimples76 - I know in my head that it is a simple procedure and kids have GA all the time from very young, it's just the unknown! They did suggest gas as when he had his blood taken it was so hard and he has superhuman strength! I can't imagine him letting them leave a cannula in his hand even if they managed to get it in!

I'm feeling much less nervous about it now, thanks to all your lovely posts

[coffeemachine]

DD was taken out with gas too. No way she would have had a cannula. It wasn't​ too bad.

[Buscake]

Hi 2boysandadog9 my boy had his op this morning and here's how it went:

He was down as first until the child's father in the bed next to us kicked up a fuss about knowing an admin person and demanded to be first so he didn't go down till about 0930 (we got there at 0700). I expected the waiting to be really hard but they had DVD players, toys etc and so he was very good for that. Had a meltdown about being weighed, so they decided to sedate him before the anaesthetic.

Sedation clearly didn't do the trick because as soon as he was put in his gown he had the most almighty meltdown it really was terrible. It took me and two doctors to hold him down while he was gassed, not very nice at all.

After about an hour i was allowed into recovery as he was waking up. Meltdown continued for about 45 mins until he finally shovelled a plateful of biscuits into his mouth and resumed watching Peppa pig.

Staff were excellent, very understanding and really did everything they possibly could have to reduce the stress for him. It was just one of those things that he knew something was afoot and he didn't want it to be done!

He is asleep in his bed at home now and seemed remarkably happy considering his morning. I need a stiff drink but will wait till after the school run at least

[dimples76]

Well done Buscake and son - you made it!

[2boysandadog9]

Thank you so much for getting back!
Sounds like it was quite stressful for certain periods, but all over now!
I have requested to be first and they said he should be - fingers crossed. Can't believe the other patients dad kicking up a fuss !!
I can imagine having to hold down DS as he is so suspicious and has had plenty of hopsital appointments so knows they will be wanting to poke and prod him... did the gas kick in quite fast??? also how long after he come round did you have to wait to leave, is it once they have eaten or something?

Thanks so much for sharing your experience x

[littletwofeet]

I have no idea about whether the operation is a good idea or not but if you do decide to go ahead....

Be prepared to insist on the day no canula/no 'magic cream' just incase-this can be quite distressing for DC with sensory issues. One of my DC has had a few operations and even though it's agreed in advance no canula, I've still usually had to argue this on the day. Just stand your ground, remember he's your DS and you know what's the best thing for him.

Is there a play specialist at your hospital? They can meet you before hand, let DS play with the equipment so he's familiar with the gas, etc and it's all less frightening for him. You can discuss DS needs in detail with the play specialist and then he/she can advocate for DS on the day of surgery. Can help with him not having to wait, etc.

Does he like watching your phone/tablet? If you can get him engrossed watching something and then hold the gas near to his face, you might be able to get him to go off without it being distressing for him.

If you can hold the gas rather than the anethnatist, DS may be calmer if it's not a stranger coming near him.

[Buscake]

The gas was fast, took seconds for him to go under. The doctors were great - really understood how doubly traumatic it was for him After he came round, we went back to the ward after about 20mins in recovery. Then about another 45-50mins we went home. He really did have the most terrible meltdowns, so I think they were pretty keen for us to leave..! Really hope all goes well for your DS

[MrsBobDylan]

I would go for it - my asd ds has had two sets of grommets, one at 2.5 the other at 3.5. it was pretty hard and he had to be put under with gas and air held over his mouth (whereas my NT son who was 2.5 could have a cannula in his hand), he tried to rip out the cannula after the op and wouldnt let the nurse touch him to do observations afterwards and insisted in sitting in his pram rather than lying on the hospital bed. I know I've made it sound horrible (it was) but don't under estimate how much sound quality children loose to glue ear and grommets are the only way to restore their hearing back to normal.

The GA is very, very light for grommets because there is no pain involved, so they come round quick and are good to go pretty soon after.

Also, otex won't work because the glue is behind the ear drum - they make a small incision into the drum, suck out the gunk then put the tiniest of tiny tubes into allow gunk to come out afterwards too.

[2boysandadog9]

Thanks for the tips littletwofeet especially playing with the equipment beforehand - DS is very inquisitive so this might be very helpful!

Although DS doesn't generally have meltdowns, I am prepared that he will be confused and will probably freak out - I imagine he will try and pull out the cannula when he comes round.

buscake - knowing the timeframes is so helpful. I can manage an hour or so after he comes round even if it is terrible!! Thank you so much.

[littletwofeet]

If you're worried about him pulling the canula, you could ask them to put a bandage round it before he wakes up. Most hospitals don't allow you to be in recovery while they bring him round (they call you straight in after) but he may be more upset that an NT child waking up without you so you could see if they can be persuaded to allow you to be there.

Some children with sensory processing difficulties also find being thirsty and hungry a lot more difficult so if he's struggling before hand, that could be why. Nothing you can do about it but sometimes helps to understand.

I would phone the hospital and see if you can do a visit before hand with a play therapist, that way you can talk everything through and DS can see the equipment. Sometimes they give you things to take home to practice/play with.
Good luck.