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.
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.
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
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.
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.
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 . 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
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
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.
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.
Morrison10 have you been diagnosed with Meniere's ? I had an ENT send me for testing and test came out as if I did have it, but they refused to give me the diagnosis because of the Dextrocardia and how maybe my heart was the issue (which is not, my heart is the only thing that works well in me)....
Hi, I was diagnosed with Menieres 40 years ago, and daily saline sinus washouts were prescribed. Did these year or so, but realised they were moving mucus to ears, so stopped. Knowledge of PCD not great then, and went for many years with limited medical care. Recent bout of Menieres taken over month to clear, 95% ok now. My heart has never been problem, but my lungs are bad. Never had NHS respiratory physio, despite it being part of NHS guidelines for PCD. Now pay for twice weekly respiratory physio, has made big difference. Physio said my lungs are worse she has worked on, but she leaves them clear after each session. One lung is partly collapsed into other. Good luck.
My now 11 year old had bilateral grommets (tubes) at 4. Her hearing (followed by speech) improved overnight. We did then have four years of constant discharge. However I still wouldn’t go back and change it. At the time we didn’t know she had PCD at that point and if we did then grommets wouldn’t have been recommended due to the discharge. However, she went to school able to hear and I cleaned her ears out most days.
Yes PCDers will always have build up and yes hearing improves somewhat as Eustachian tubes grow but actually PCDers are a medical mystery as to why their hearing overcomes so much build up. It is subject to research at Leicester currently. We had a very interesting conversation with an ENT prof there about this phenomenon last year. That being said my daughters hearing is still very variable at the mo.
That is very interesting. The difficult part in it all is, that everybody had such a different outcome having PCD. I will never know for sure if we are making the right dicision (right now we stay with the hearing aides). So I am very greatfull for any research about PCD. I will wait for the outcome from this one too. I only found one quite old research which was negative about grommits. Very glad they worked well for your daughter. I think I might consider it again in a couple of years, when I can have a conversation with my boy about it.
I am an adult with PCD. I had grommets as a child (10yrs old) to treat constant ear infections, ear pain and hearing loss caused by fluid in the ear tubes. I had a very positive experience with grommets, they gave me back my hearing within days and stopped all the ear pain and infections. I personally did not suffer from the constant drainage that Doctors nowadays cite as a reason to not use grommets to treat PCD ear issues. As an adult my ear issues returned at around 35yrs of age, but thanks to grommets I had years of painfree hearing.
That is very interesting. Thom luckely has no pain or ear infections only hearingloss due to the fluid in his ears. That makes me reluctant now to try grommits. But maybe when he gets older en we can deside together we might give it a try. I am sorry to hear you have ear problems again. Could you try grommits the second time or would that damage your eardrum too much?
I would absolutely try grommets again, but unfortunately the advice in the UK has changed over the years and they no longer offer grommets to patients with PCD because they claim there will be continuous discharge from the ear when grommets are fitted. I would certainly recommend grommets as they made a huge difference to my hearing for years. Good luck with your decision and I wish Thom the best of health
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. 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
) 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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