Recurring Ear Infections with Ear Tubes - PCD Family Suppor...

PCD Family Support Group (UK)

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Recurring Ear Infections with Ear Tubes

Paisley55
Paisley55

Hello Everyone,

This is my first post and I actually live in the United States not the UK. I am posting here because there seems to be more support and knowledge about this condition in the UK. I am a mom to a 16 month old that has been officially diagnosed with PCD (By genetic testing) and also has situs inversus. She has had many ear infections since birth, so we had ear tubes put in when she was 13 months old. She still gets ear infections even with tubes put in. We will finish up a round of antibiotic ear drops (10 days) and within 5 days she will start to get very irritable and thick drainage will start to come out of her ears again. She seems happy and her ears seem clear when she is on the ear drops. What have you done to manage ear infections in your kids at this age? I am also concerned about her hearing when she has drainage. I know that she can hear very well when her ears are clear, but most of the time they are not clear unfortunately.

Thank You!

12 Replies

Hi my son was diagnosed at 6. One of the main give always that he had PCD was his ears. He too had recurring ear infections with ear tubes. It was a nightmare .

He had 2 sets each set got blocked and infected.

I think the general consensus in the uk is that children with PCD is that the tubesmake it worse and should have them removed. At least that's what we were told.

My son now has hearing aids and no tubes and has had no infections since.

Maybe it's worth discussing this with your doctors . Hope this helps .

I had this same problem as a infant and had chronic sinus infections too. My hearing loss only affected my spelling in the long term of things.

I use a saline rinse everyday to keep secretions from building up and it is such a God sent relief for me as it helped keep my sinus as clear as possible and decreased my ear infection a lot. I wish I had this product as a child. (sinus rinse by neil med squeeze bottle formate)

Ask a doctor if a sinus rinse help as there are pediatric formats available too. Good luck and God bless

corie10
corie10 in reply to fcfilice

Hi there, I am also dealing with chronic ear infections with tubes for my 2 year old. Can you please tell me which sinus rinse you use? Is it just the saline spray?

fcfilice
fcfilice in reply to corie10

I use distilled water and a product call sinus rinse made by Neil-Med

We are also in the US and my daughter is also 16 months :) As mentioned below we do a sinus rinse twice a day. Not a normal sinus rinse though, since she is so small. We squirt saline in and use our suction machine. Kinda like the suction the have at the hospital. This was prescribed to us. I feel like this is what what keeps us from getting ear & sinus infections. She has only had 1 ear infection. Also, her dr. Does not believe tubes are a good thing. So she will not be getting them. They can cause excessive drainage and cause more issues. He said he practices more like his European counterparts. So she is getting cochlear hearing aids. They sit behind her ears and go directly to her hearing apparatus (if you look these up don't freak out when you see these are transplanted into the head. We are getting the kind that is on a headband and they do not want us to get the transplant type since she will hopefully grow out of this and it's not a permanent hearing loss). This bypasses the fluid in her ears so she can hear clear all the time. This will help with her speech development. I'm not sure where you are located but we are in the Denver area and love our Dr's. Let me know if you have any questions :)

Paisley55
Paisley55 in reply to Veronica_B

Hi Veronica, Could I get the name of your daugther's ENT doctor in Denver? Thanks so much for your reply!

Veronica_B
Veronica_B in reply to Paisley55

She sees Dr. Jeremy Prager at Children's Hospital Colorado in Aurora.

Paisley55
Paisley55 in reply to Veronica_B

Thank You!

Thanks for the replies everyone. We live in Montana and since we are a more rural state, it has been very difficult to find any doctors that have treated or even seen this condition. It is standard procedure here to place tubes after 6 or more ear infections, so we thought we should at least give it a try. We have noticed that her hearing is much more consistent with the tubes, but she has to be on almost constant antibiotic ear drops to keep them clear. I am worried about the bacteria becoming resistant. We recently took her over to Seattle to see several specialists. The Ear Nose & Throat doctor that we met with suggested that we get her ears suctioned out frequently if need be, but that seems like it could possibly cause damage over time. I am very interested in finding out about the hearing aid option and removing the tubes.

Veronica - Could you please give me the contact info for your daughter's doctor in Denver?

TerryBun
TerryBunAdministrator

I was told the same thing as Emma above, that grommets cause more problems than they solve in the majority of people with PCD, they either fall out or cause persistent ear discharge. For that reason they tend not to be used in the UK in someone who is known to have PCD.

I can only tell you what what I know from our experience - My daughter was diagnosed with PCD and situs inversus only after 2 and a half years of _constant_ ear infections. It sounds similar to your experience - she had a few ear infections so the doctors decided to try grommets. Once the grommets were in, we had non-stop infections and discharge of blood and mucus, ear drops, then a few days reprieve before the next infection would start. She is now almost 6 and have _finally_ mangaged to go a couple of months without an infection. There's 3 things we're thinking might have helped 1. she's older so her ear canals have widened and straightened a bit 2. the perforations from the grommets have _finally_ managed to heal 3. we now use the pediatric Neil Med Sinus rinse that others have mentioned, and we use it religiously twice a day with a nasal spray at school during lunch.

It's hard. If I knew then what I know now, I would have asked for prophylactic antibiotics. to get us through those tough years.

I can say that she has had no permanent damage, thank goodness, and we have just last month had the first NORMAL hearing test result!!! Wooohoooo!!!

Good luck. xx

Hi - my daughter had the same thing for 4 years with bilateral grommets. The constant discharge with grommets/tubes is a textbook symptom of pcd and is what led to my daughters diagnosis. However, although it looks like an infection the thick nasty discharge isn’t necessarily chronic infection just symptomatic of pcd when grommets are put in. I for one wouldn’t change what happened with us as tubes allowed her to hear perfectly from the moment they were put in and by the time they were removed her Eustachian tubes had grown to be better able to cope with the additional mucous and secretions and with her physio and daily sinus rinses we now have no tubes and generally perfect hearing. The ear discharge looks worse than it is and will continue as long as the tubes are in place irrespective of oral or aural antibiotics. Make sure they do swabs to check there actually is an infection before starting yet another course of antib’s (for us she had an actual infection about 20% of the time but discharged permanently) and keep the area clean day to day with earbuds with a drop of tea tree on

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