Anyone experience with ear tubes / gr... - PCD Family Suppor...

PCD Family Support Group (UK)

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Anyone experience with ear tubes / grommets?

LesleyAmsterdam
LesleyAmsterdam

Hi you all.

My boy Thom (now almost 3 yrs old) was diagnosed with PCD when he was 6 months (he was born with a lung infection and was admitted to the NICU).

His hearing has always been bad due to mucous behind his eardrums. Because of that he has behind-the- ear hearing aides.

He is doing fairly well with them and only had an ear infection for one time, but sometimes I still wonder if we should try ear tubes / grommets.

So has anyone experiences with ear tubes?

And has somebody had hearing loss as a child that got better when growing older? (due to a bigger Eustachian tube)

Thank you in advance for your help :)

PS: we live in Amsterdam and have a very good PCD team, but I am just very curious about your experiences.

Oh and we use Physiomer nasal spray twice a day (it is like Neil Med, but you can use this one for babies)

Thank you!

12 Replies

Hello, our daughter (now 13) had the same issue’s at birth and has been in and out of hospitals and clinics many times. But we have a fantastic team here at the IWK in Nova Scotia.She had her first set of tubes at 11 months but suffered terribly with drainage from the ears. The clinic suggested hearing aids but because of Chronic suppurative otitis media, they would get blocked.

She eventually had a Mastoidectomy in one ear to relieve the inflammation and has suffered permanent mild hearing loss due to her many cases infections.

Our Dr said that, over time the ears will improve due to the Eustachian tubes becoming more downward as the child grows older. Her chest is doing good too and is in generally good health.

I hope this helps!

Thank you for your reply :) So if I understand correctly she had tubes, but they did not work because of the ear infections? And hearing aides could not work because of that too? I am sad to hear that. Is the mild hearing loss bothering her a lot? I do hope it will get better when she gets older!

Luckely Thom did just have 1 ear infection for a few days, but I am afraid tubes will encourage infections. But I also want to try if he can hear better with tubes...

Maybe we will wait untill he can explain better to us if he is hearing okay or not.

Without his hearing aides he asks us what we are saying a LOT.

Hi, my daughter is 9 and was diagnosed with PCD at age 5 (no diagnostics here in Ireland) and suffered with ear infections, wax build up and poor hearing for a number of years. Her consultant advised that grommets are not recommended for children with PCD as they will suffer from continuous drainage.

Her hearing has improved considerably in the last 2 years since we started using the neilmed sinus rinse twice a day. The only time it gets bad again is if she gets sinusitis. Her chest improved once she reached the age where she could cough up mucus after using her nebuliser. It does get easier as they get older.

Hope this helps, take care.

Thank you! And Thom has also so much wax! Did not know it was because of the PCD. We already use a nasal rinse that is similar to Neil med (physiomer). I think that because of that he has had almost no ear infections, only hearing loss due to fluid/mucus behind his ear drums.

That made me think we should try tubes, but I think we will wait until he grows older, or maybe not try it at all.

He also has a lot of mucus in his chest but this he can cough up quite well. He is always jumping and running and it is not bothering him at all :)

TerryBun
TerryBunAdministrator

Hello Lesley

This is from our PCD Support UK website

Problems with the ears and nose often lead to a diagnosis of PCD. Otitis Media with Effusion (OME) or Glue Ear is almost universal in PCD. This is due to mucus collecting in the Eustachian tube and not cleared as the cilia there are not working properly.

This means air does not get to the middle ear from the nose, fluid taking its place. This causes hearing loss as the sound has to travel through the liquid. In younger children there may be ear infections. Technically, the problem is just lack of air.

The normal management of a child with hearing loss due to glue ear is insertion of grommets (ventilation tubes). When grommets are put in the ear is no longer waterproof, so care must be taken when hair washing and swimming.

The tube can get infected and ear discharge may result. PCD patients with grommets tend to have persistent ear discharge.

The discharge mitigates any benefits from the grommets and makes wearing hearing aids not possible. For this reason normally grommets are not inserted in children with PCD except in special situations such as if the ear drum looks in danger of collapsing.

You can find more information on our website at

pcdsupport.org.uk/what-is-p...

Thank you, good info. I will just hope his Eustachian tubes will grow so big that the lack of working cilia does not matter so much and his middle ears will clear. And for now I am just happy he is ok with his hearing aides and has no ear infections.

LD28
LD28Administrator in reply to LesleyAmsterdam

Hi Lesley,

Just to add to Terry's brilliant points - grommets (ear tubes) aren't really recommended in the UK and can lead to more infections, which definitely isn't ideal. I had hearing aids in both ears from age 4-11 and relied a lot on lip reading. My hearing definitely improved with time and although my hearing is still not great and I may end up using hearing aids again in the future, I definitely don't need them yet (age 29) and one bonus is I am really good at lip reading! A few other people with PCD here who I've discussed this with say the same :D . Luckily hearing aids nowadays are much more discreet than they were many years ago and so hopefully if he needs hearing aids he won't find them too embarassing as a young child. My mum covered mine in stickers when I was young - which might be a 'cool' distraction if he doesn't like them! Good luck, Lucy x

LesleyAmsterdam
LesleyAmsterdam in reply to LD28

Haha being able to read lips is brilliant :) Very interesting to know you needed hearing aides from 4-11. I did not know hearing could improve until that age. I just talked to his ENT and he says that some children, although their hearing has improved, still want to wear their hearing aides because they are so used to it. I kinda like that idea. Right know he has absolutely no problem with his hearing aides, but I am making fake ones for his cuddly toy (monkey). (is cuddly toy the right word for it? it sounds not quite right. In dutch we call it simply "hug" if you translate it.)

Oh and I also found great colourfull hearing aides safety cords with animals/cartoons on them :)

TerryBun
TerryBunAdministrator

I would say that my hearing loss did improve as I got into adulthood, it never really bothered me too much, even though my left ear was quite a bit worse than my right. Maybe I was just used to it and learned how to compensate and listen harder, etc. As I am now a lot older my hearing loss has declined somewhat, but that is also the case for a couple of my friends, who don’t have PCD, seems it is an age thing as well as PCD for me.

I hope Thom continues to make good progress.

Yes I think Thom compensates already. He knows better what I am saying when he is looking at me. I think we will keep is hearing aides and when he is big enough to make a desicion himself he can always try grommits.

Hi, I wasn’t diagnosed with PCD until 33, had ongoing ear problems, and at age 60 had experimental grommet into one ear. Within few hours it was blocked and painful, but had to wait 7 months to have it removed, and when it was nerve was killed, so can’t hear in that ear, which could before grommet fitted. So I suggest being careful with grommets, and if they are fitted get written agreement that will be removed immediately any problem occurs. Blocked ears cause problems such as vertigo, Meniere’s Syndrome. I’ve had it this week, hence I haven’t been able to reply to your queries until now. So glad you have consultants who are interested in PCD, good luck.

Wait 7 months?! That is horrible! And so is meniere's. Although I do not have PCD myself (just carry the gene :( ) I did have Meniere a couple years back. Could absolutely do nothing. Thank you for your warning. We do have a great ENT team, so IF we decide to try grommets (which I do not expect by now) I will def ask them how soon they can be removed if problems occur.

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