Ear tube woes- anyone have any advice?

[Logan Sapphire]

My son will be 2 on Wed and was diagnosed with an ear infection this morning by the pediatrician. I am taking him to his pediatric ENT later on this afternoon for a 2nd opinion. I feel very frustrated because DS got tubes in when he was 10 months old. They lasted about a year and became dislodged from the eardrums on their own, though they had to be removed from his ear canals by the ENT. The tubes left holes in his eardrums, which to date haven't closed up on their own. The ENT won't do surgery to patch the holes until DS is at least 3, but in the meantime, said we could expect some hearing loss and speech difficulties. Fortunately DS talks up a storm so hopefully we won't have much regression in that area. Supposedly the holes also will act in the same manner as the tubes- will drain and provide ventilation.

Long story, short- we noticed him acting funny and he was saying his ears hurt and that he had water in his ear, so an audiologist friend took a look and noticed red eardrums. Ped confirms and gives prescription for oral antibiotics. I want the ENT to confirm and explain, since the tubes were removed only 3 weeks ago.

I feel at a loss b/c he keeps getting repeated infections and while I know tubes are no guarantee the infections will stop (in fact, he did get 2 during the year he had the tubes, which is much less than before), we've never once seen his ears drain the way they are supposed to with tubes and/or holes in the ear.

What will it take to get this kid healthy? Has anyone had similar issues where tubes didn't quite fix the issues?

 

[NovemberBride]

LS,

I had a similar experience with my DD. She got tubes right at 1 year, one had fallen out by our 6 month follow-up and the other is now working it's way out (She's 2 1/2). Although not perfect, for us the tubes were totally worth it. I think our DD had 8 ear infections between 3 months and a year, and only 1 or 2 since she got them and the ones since she got the tubes resulted in much milder symptoms. It sounds like the tubes did their job since you DS got fewer infections, our doctor did tell us that kids still get ear infections with tubes, the frequency and severity should be much less. I am not sure what you want the ENT to confirm and explain, did he/she not tell you ear infections were still a possibility?

 

[Skippy123]

I am sorry that your little one keeps getting ear infections. My cousin has kids a little older than my twins and her youngest son kept getting ear infections so they finally got tube and they have no more infections. My cousin is so glad this got the tube. I hope your little one has no more ear infections.

 

[galeteia]

Some of my earliest childhood memories are screaming myself into exhaustion at night because of ear infections. My mother took me to a naturopathic doctor who determined I had a sensitivity to dairy that was causing extreme congestion. It was NOT an 'allergy' or 'lactose intolerance' and thus MDs had not caught it. They only recommended putting tubes in my ears to fix it. My mother wanted to treat the cause, not the symptom.

On the ND's advice, my mother took me off dairy, and within two weeks everything had cleared up completely. (!!) I still have issues from the scarring, especially if I am in an airplane, or I get pain if I consume too much dairy in my diet.

 

[JGator]

LS, you might not want to hear from me on this topic. I had tubes in my ears every 2 years growing up from about 3 to 13 or so. I felt cured at that point, but as an adult my issue resurfaced in my 20s. I had to have tubes put in, then a skin graft from the back of my ear to cover the hole in my ear drum. I have serious scar tissue from having so many surgeries and it has left my ear drums very thin. Believe it or not my hearing is still pretty good though.

I would suggest looking into reducing dairy. And, also, one of my ear doctors suggested using a Saline Nasal Spray (in a metal can) daily in the shower to help reduce the likelihood of colds/allergies which can lead to ear infections. This has helped me tremendously. I also was on a daily Allergy plus Sudafed (Claritin-D, Allegra-D, Zyrtec-D) regimen for years which also helped, but I think the saline spray is just as effective.

 

[Logan Sapphire]

LS,

I had a similar experience with my DD. She got tubes right at 1 year, one had fallen out by our 6 month follow-up and the other is now working it's way out (She's 2 1/2). Although not perfect, for us the tubes were totally worth it. I think our DD had 8 ear infections between 3 months and a year, and only 1 or 2 since she got them and the ones since she got the tubes resulted in much milder symptoms. It sounds like the tubes did their job since you DS got fewer infections, our doctor did tell us that kids still get ear infections with tubes, the frequency and severity should be much less. I am not sure what you want the ENT to confirm and explain, did he/she not tell you ear infections were still a possibility?

I just got back from the ENT and it is another infection.

I didn't do a good job of explaining why I wanted the ENT to double check...we have a long history of pediatricians vs. ENTs with DS. About 3 months after the tubes were put in, the pediatricians started saying that the tubes were coming out and that they didn't look placed in there correctly. The ENT would disagree each and every time. He told us that should we suspect an infection, to have him look at it, not the pediatrician, b/c they didn't know enough to properly diagnose and that unless he saw the infection himself, it was very hard for him to rely on what we said the ped said. He also suspected that DS didn't actually have any infections despite what other drs. were saying. We knew he could still get infections with tubes- in fact, the ENT said he would pretty much guarantee it with DS' history.

Once the tubes were removed, it took only 3 weeks to get this infection. That's why I'm frustrated...

 

[LtlFirecracker]

LS,

It sounds like your son is one of those kids that is having complications with ear tubes. I have only have about 3-4 patients go though something like this, so I know how challenging it can be. None of the patient's I have worked with were as young as your child, so I do not know if what worked for them will work for your child. I would like to say, I am NOT an expert in PE tubes and know very little about it. So please take this advice from someone who has seen this and done trial and error.

Is your ENT doc a general ENT doctor, or a pediatric ENT provider? The difference is that a pediatric ENT doc has done a residency in ENT plus additional speciality training in pediatric ENT issues. I once had a patient in a similar situation to yours (a little different, but lots of parallels) and the ENT provider (a general one) told him nothing could be done. His speech was very behind, and it was clear he was loosing his hearing. I sent him to a pediatric ENT provider. While it took a very long time to fix the problem, that doctor at least got the patient on the right path. I am not sure a pediatric ENT provider can fix the hole in the tympanic membrane, but at this point if he is still getting infections, that is not the priority. I think a general ENT provider is fine for a routine case (kid gets tube, kid stops getting ear infections, tubes fall out, ear drums reseal). But if someone is telling my patient options are getting low, and they are not the expert in the field, I will try to get them to see the expert for a second option. If the expert agrees, I usually go with their opinion.

Just my 2 cents. As I said, I know how frustrating this is for a parent to go through.

 

[Munchkin]

I'm honestly confused.

When the tubes were removed a few weeks ago they must have been removed from the canal, not the drum. That alone should not have had an impact on any infections.

What I don't understand is how a drum is red and bulging if the surgical site is open. If the site is open, then the canal should have drainage and while the drum might look red, it shouldn't be able to bulge. If the drum is red and bulging then the site likely healed, thus eliminating any future need for myringoplasty.

Did the ENT explain what they saw and why/how it happened with a redundant myringotomy?

It sounds like you keep getting bounced around while you and your poor son worry and suffer.

Personal note: when we did DS's tubes at 12 mos he had an adenoidectomy at the same time. At the end of the day, for some children, creating an opening in the drum is a band aid rather than a solution. For some children, removing the adenoid tissue enables proper eustachian tube function and reduces general congestion which leads to more infections. Many of my patients have done far better with tubes and adenoids than just tubes, so we agreed with the advice of our ENT and did it under one round of anesthesia.

 

[Logan Sapphire]

LS,

It sounds like your son is one of those kids that is having complications with ear tubes. I have only have about 3-4 patients go though something like this, so I know how challenging it can be. None of the patient's I have worked with were as young as your child, so I do not know if what worked for them will work for your child. I would like to say, I am NOT an expert in PE tubes and know very little about it. So please take this advice from someone who has seen this and done trial and error.

Is your ENT doc a general ENT doctor, or a pediatric ENT provider? The difference is that a pediatric ENT doc has done a residency in ENT plus additional speciality training in pediatric ENT issues. I once had a patient in a similar situation to yours (a little different, but lots of parallels) and the ENT provider (a general one) told him nothing could be done. His speech was very behind, and it was clear he was loosing his hearing. I sent him to a pediatric ENT provider. While it took a very long time to fix the problem, that doctor at least got the patient on the right path. I am not sure a pediatric ENT provider can fix the hole in the tympanic membrane, but at this point if he is still getting infections, that is not the priority. I think a general ENT provider is fine for a routine case (kid gets tube, kid stops getting ear infections, tubes fall out, ear drums reseal). But if someone is telling my patient options are getting low, and they are not the expert in the field, I will try to get them to see the expert for a second option. If the expert agrees, I usually go with their opinion.

Just my 2 cents. As I said, I know how frustrating this is for a parent to go through.

Hi- thanks for responding. I think the dr. is a general ENT dr- from his bio: "interests include adult and pediatric general otolaryngology," which I assume means that b/c he also sees adults, he's not specifically a pediatric ENT. Am I correct?

Fortunately, DS' speech is really good, but we were warned by the ENT and my audiologist friend that his perforated eardrums meant that his speech/hearing will most likely be impacted. The ENT said that the holes left by the tubes are bigger than the holes the tubes themselves provided. He seemed surprised that both ears would still have holes, but from what I've seen and read since then, this isn't really an unusual situation. We're going to get DS looked at by a pediatric ENT.

 

[Logan Sapphire]

I'm honestly confused.

When the tubes were removed a few weeks ago they must have been removed from the canal, not the drum. That alone should not have had an impact on any infections.

What I don't understand is how a drum is red and bulging if the surgical site is open. If the site is open, then the canal should have drainage and while the drum might look red, it shouldn't be able to bulge. If the drum is red and bulging then the site likely healed, thus eliminating any future need for myringoplasty.

Did the ENT explain what they saw and why/how it happened with a redundant myringotomy?

It sounds like you keep getting bounced around while you and your poor son worry and suffer.

Personal note: when we did DS's tubes at 12 mos he had an adenoidectomy at the same time. At the end of the day, for some children, creating an opening in the drum is a band aid rather than a solution. For some children, removing the adenoid tissue enables proper eustachian tube function and reduces general congestion which leads to more infections. Many of my patients have done far better with tubes and adenoids than just tubes, so we agreed with the advice of our ENT and did it under one round of anesthesia.

I'm so confused too Yes, you're right, when the tubes were removed, they were out of the drum and in the canal, apparently buried under ear wax and dead skin The ENT said that there really wasn't any timeframe he could give us for when the holes might close up, but that aside from the hearing/speech impact, the holes would act in a similar manner to the tubes in that they would provide the same ventilation that tubes would.

The pediatrician saw that the drum was red, but I don't know if they said it was bulging (my parents took him to the appt) and said that it was an ear infection and prescribed oral antibiotics. There is no drainage. The ENT looked and said that the drum is indeed red (didn't know to ask about the bulging) and that it's early ear infection and prescribed drops (Ciprodex). We prefer to use drops over oral antibiotics at this point. He also said there was no fluid or drainage yet. My audiologist friend, the pediatrician, and the ENT all confirmed he still has the perforated drums.

What confuses me is that we've been told that with tubes (and now with the perforated eardrums), each time there's an infection, his ears should drain. Unless DH and I are totally clueless (and that could be possible), we've never seen any drainage from him with the 3 or 4 infections he's had while tubes or holes are there. People have said that's impossible, but I swear we've never seen any from his ear or in his crib. The ENT's physician's assistant told me that the only way a tubed ear might not drain is if the tube is somehow blocked (see next paragraph).

Various peds plus a pulmonologist all had looked at his ears in various stages of wellness and infection and all 4 of them had said the tubes weren't placed in there correctly, that they appear to be blocked, etc. The ENT always would reply that those drs weren't ENTs and that while they were all seeing the same thing when they looked in DS' ears, they didn't understand the tubes and their placement the way he did. The ENT will not do surgery to close up the holes until DS is at least 3, as he said that if DS needs another set (and most likely would due to the severity of the problem and his young age when he got the tubes), it would be counter-productive to close up the "natural" holes left behind now. Rationally I can understand that, but I worry about the hearing and speech issues.

Sorry if this is a novel. DH and i are just confused and frustrated. He does have upper respiratory issues, which is why he sees a pediatric pulmonologist, and he has food allergies as well (not sure if that's connected in some nefarious manner). We feel like we can't get a straight answer, but maybe there isn't one.

 

[LtlFirecracker]

Hi- thanks for responding. I think the dr. is a general ENT dr- from his bio: "interests include adult and pediatric general otolaryngology," which I assume means that b/c he also sees adults, he's not specifically a pediatric ENT. Am I correct?

Fortunately, DS' speech is really good, but we were warned by the ENT and my audiologist friend that his perforated eardrums meant that his speech/hearing will most likely be impacted. The ENT said that the holes left by the tubes are bigger than the holes the tubes themselves provided. He seemed surprised that both ears would still have holes, but from what I've seen and read since then, this isn't really an unusual situation. We're going to get DS looked at by a pediatric ENT.

Yes you are correct. I also agree that "red ears" are not always a sign of infection. Kids who have fever, are crying through the exam, or have a viral illness can have "red ears." With perforated ear drums, I would also expect drainage. I think you have a lot of options to consider, some of them are being mentioned above, I did not want to mention them because I don't know the whole story. It sounds like your son has been evaluated for food allergies, he is young for seasonal allergies, but it is not impossible. Any condition that causes chronic congestion can lead to ear infections. The list of problems that can cause chronic congestion is VERY long. Has the plumonologist checked him for any other chronic underlying medical conditions or discussed any tests with you?

 

[Munchkin]

It sounds like you keep getting bounced around. You poor thing.

I do find it interesting that multiple medical professionals corroborated (without knowing) that the tubes did not seem properly placed. I'm only in general peds, but trust me, I can tell if a tube is patent or not! I do not specialize in ENT but I in my 7 years of practice I have looked at literally tens of thousands of ear drums. I can tell if a tube is patent and can tell if a tube is occluded by wax or dried drainage.

I'm mostly concerned that it seems as though your ENT isn't respecting your knowledge and concern for your own son's well-being, and appears to expect you to assume his authority. Have you ever considered a second opinion? We switched all of my son's specialists to the "other" childrens' hospital in our state after GI dropped the ball. The head of the department called my boss saying that he didn't realize I was (my practice's) APRN. My boss said "Forget her medical knowledge, you should have listened to her as a parent who knows her kid." At the end of the day, that's my mantra. I will NEVER know my patients as well as their parents do.

Food allergies can ABSOLUTELY be related. Simply put: a child with food allergies is (usually) guaranteed to have other environmental allergies. Environmental allergies contribute to chronic congestion. Chronic congestion leads to boggy, swollen nasal passages and chronic ear fluid. Chronic ear fluid easily develops into acute otitis media. Asthma and eczema are part of the the hyper reactivity, too.

 

[GlamMosher]

I am relying on memory here as my son is now 15, but he had very bad ears as a baby. His ears would build up within hours to the point where the ear drum would burst and horrible thick brown gunk would run down his neck. The first time it happened we were assured the hole would heal on it's own and not to worry.

He then got asthma and was hospitalised under a respiratory paediatrician who said it was his adenoids causing the whole set of problems. He thought he could fix it all by going on long term antibiotics. Unfortunately he continued to have burst ear drums on the antibiotics! This all happened within a few months.

Finally he had grommets, adenoids done and they wanted to do tonsils also but I decided against that as they really were not a problem.

Just before he had the op, his speech was going (he was about 15 months then) and was not walking. Within weeks of the op, he was talking properly again (for a baby) and was walking. The grommets stayed in for ages and fell out on their own.

I also tried the soy milk thing but it didn't have any affect for him.

I wonder why we were told that my son's ear drums would heal on their own, yet you have been told they will need to operate later?

A few more things - we were mucked around by doctor's trying to one up the other too. The respiratory paed did NOT want to operate, yet the surgeon said that was all that would fix him. In the end, we were supposed to be going on holiday and the resp paed said there was no way the child could fly. So then we had to have a rush job getting his op done, in the same week all doctors were on some sort of ENT conference...

Also, I agree that the adenoids are a big factor. I had mine done 3 times as a child and my older son also had his done ( altho not grommets). If you are an allergic type person, these swell up and block the end of the tube, causing fluid to stay in there and hence an infection.

If your child continues to get infections, probably a good idea to investigate this.

From my limited knowledge on how it works, if there is a hole on the drum, then the fluid is probably draining in small amounts and you wouldn't notice. In cases where the drum bursts, that is because the amount of fluid was so great it caused enough pressure to burst the drum, and that is when you see it running out. With grommets or another hole, the infection probably won't get as bad as it is able to drain rather than build up trapped.

Sorry this is a bit rambly! Things kept coming back to me as I typed.

 

[amc80]

I'm honestly confused.

When the tubes were removed a few weeks ago they must have been removed from the canal, not the drum. That alone should not have had an impact on any infections.

What I don't understand is how a drum is red and bulging if the surgical site is open. If the site is open, then the canal should have drainage and while the drum might look red, it shouldn't be able to bulge. If the drum is red and bulging then the site likely healed, thus eliminating any future need for myringoplasty.

Did the ENT explain what they saw and why/how it happened with a redundant myringotomy?

It sounds like you keep getting bounced around while you and your poor son worry and suffer.

Personal note: when we did DS's tubes at 12 mos he had an adenoidectomy at the same time. At the end of the day, for some children, creating an opening in the drum is a band aid rather than a solution. For some children, removing the adenoid tissue enables proper eustachian tube function and reduces general congestion which leads to more infections. Many of my patients have done far better with tubes and adenoids than just tubes, so we agreed with the advice of our ENT and did it under one round of anesthesia.

I dont mean to hijack this thread, but I have a question related to what you said. Can you explain more about the relationship between the adenoids and the e-tubes? A few years back I had an issue with my ears. Basically, every single day my ears would plug and most of what I could hear was my own echo. I went to an ENT who said it was allergies. After several months of allergy meds and no relief, I saw a higher level ENT. He said the problem was quite the opposite- that my e-tubes werent functioning properly and were staying open all the time, so the echo I was hearing was a function of hearing my voice both internally and through my ears. He also said there was no real cure. Actually he did say pregnancy would help, something about hormones. Well, I moved from sea level to about 5k feet and the problem went away. I had forgotten about it until I went down to the valley (close to sea level) and the ears acted right up again. So much for the pregnancy theory, since I'm pregnant right now! Anyway, I doubt I will live at high elevation for ever and really dread the thought of this happening again. Any insight you have would be appreciated!

And sorry again for the thread jack...I really hope you can get answers soon! Ear infections are no fun!

 

[Logan Sapphire]

Yes you are correct. I also agree that "red ears" are not always a sign of infection. Kids who have fever, are crying through the exam, or have a viral illness can have "red ears." With perforated ear drums, I would also expect drainage. I think you have a lot of options to consider, some of them are being mentioned above, I did not want to mention them because I don't know the whole story. It sounds like your son has been evaluated for food allergies, he is young for seasonal allergies, but it is not impossible. Any condition that causes chronic congestion can lead to ear infections. The list of problems that can cause chronic congestion is VERY long. Has the plumonologist checked him for any other chronic underlying medical conditions or discussed any tests with you?

We initially went to the pulmonologist for a second opinion b/c the ped diagnosed him with asthma when he was about 18 months old and wanted him on albuterol and Flovent for maintenance. The pulm did confirm that he should be on albuterol and flovent, and also put him on Nasonex and Zantac for suspected reflux. Fortunately he said at the worst, he thinks DS might've had infantile asthma but has outgrown it. We can stop the meds (except the Zantac) this summer! When DS would get colds this past winter, we would use the albuterol to keep respiratory issues under control and that seemed to work and not lead to more ear infections.

He did do blood work to rule out any immuno-suppression issues and all the results came back fine, thank goodness.

 

[Logan Sapphire]

It sounds like you keep getting bounced around. You poor thing.

I do find it interesting that multiple medical professionals corroborated (without knowing) that the tubes did not seem properly placed. I'm only in general peds, but trust me, I can tell if a tube is patent or not! I do not specialize in ENT but I in my 7 years of practice I have looked at literally tens of thousands of ear drums. I can tell if a tube is patent and can tell if a tube is occluded by wax or dried drainage.

I'm mostly concerned that it seems as though your ENT isn't respecting your knowledge and concern for your own son's well-being, and appears to expect you to assume his authority. Have you ever considered a second opinion? We switched all of my son's specialists to the "other" childrens' hospital in our state after GI dropped the ball. The head of the department called my boss saying that he didn't realize I was (my practice's) APRN. My boss said "Forget her medical knowledge, you should have listened to her as a parent who knows her kid." At the end of the day, that's my mantra. I will NEVER know my patients as well as their parents do.

Food allergies can ABSOLUTELY be related. Simply put: a child with food allergies is (usually) guaranteed to have other environmental allergies. Environmental allergies contribute to chronic congestion. Chronic congestion leads to boggy, swollen nasal passages and chronic ear fluid. Chronic ear fluid easily develops into acute otitis media. Asthma and eczema are part of the the hyper reactivity, too.

I do feel bounced around!

We too thought it was telling that various other drs all said the same thing about the tubes' placement. And each time we'd mention that to the ENT, he got defensive (naturally) and said that none of those drs were ENTs, etc. We thought the same as you- while a pediatrician might not be an ENT, surely they've seen enough tubes in their lifetime that they can tell when one is not right. The one thing that gave us pause, late in the game, was when the pulm, one of the pediatricians, and the ENT's PA all said that the tubes were completely gone- not even hanging out in the canal but completely out of the ear, but the ENT said nope, they're buried, and after some digging around, he retrieved both of them, which are now hanging out in my jewelry box. So we thought, hmm...maybe the other drs did miss something b/c they thought the tubes were gone but they weren't. Another thing that made us uncomfortable was that unless we pushed for ear drops, the non-ENTs all prescibed oral antibiotics for DS' infections, which (to us) was part of the reason he got tubes- so that he wouldn't have to be on antibiotics repeatedly as he was prior to the tubes.

Anyway, you are right- even if this ENT does have the expertise, I think he has a bedside manner that doesn't work well with our neurotic need-to-know-damnit! style of parenting for this poor little fella. Some people have given us recommendations for pediatric ENTs that we'll investigate.

Re: the food allergies- DS has had peanut and pecan allergies confirmed through a skin test and two reactions to eating and touching peanuts. The testing revealed a pecan allergy as well, so he avoids all nuts just to be safe. We have started to suspect seasonal allergies as well, though the pollen levels here in DC have been really high so it's quite possible he's reacting to the extremely high levels even if he normally would not have a reaction to typical spring pollen levels. Per his allergist's advice, he takes 1/2 tsp of Benadryl nightly year-round. As we went to the allergist for the peanut reactions, she only tested for nuts/peanuts and no other allergens. I've often wondered if there are other undetected allergies as well. Neither DH nor I have any allergies ourselves- seasonal or food, but I wonder if we should have him tested for the other Top 8 or environmental allergies? Before the tubes, his issue indeed was that he had chronic ear fluid that just kept getting infected/re-infected.

Thanks for listening, all. It's been therapeutic talking about it, instead of feeling dismissed!

 

[Logan Sapphire]

GlamMosher- the ENT said if the holes don't close on their own, we should consider having it done. So there's the possibility that they'll cloes all on their own. Unfortunately, he couldn't give us any estimation of when we might expect it to happen naturally, so that's why he said the earliest he would do it would be 3. It could happen tomorrow or in a year or maybe never???