WWYD re: Ear Tubes, Audiology, ENT — The Bump
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WWYD re: Ear Tubes, Audiology, ENT

Hi everyone, I haven't posted in a while. I can't remember what all my siggy has on my 11 month old son's diagnoses (though I think it has a link to his facebook update page) but the short version is he has a rare, but small genetic duplication, and several issues with neuro, neuromuscular, and developmental stuff. It's a bit much to type out right now...

Anyway, one of the big things we've been dealing with is audiology. He passed his newborn screen, but there were concerns around 5 months that he wasn't really responding to anything sound-wise. This was around the same time that he started having seizure-like shaking episodes (seizures have since been ruled out and his neurologist feels that he may have a movement disorder). When he was evaluated by EI he demonstrating the receptive language skills of a newborn (at 6 and a half months) and expressive of a 3 month old. He also had significant delays in adaptive behavior and more mild delays in all but gross motor (he was ahead of usual motor milestones by months, but completing them in abnormal ways - which was attributed to some issues he has with his muscle tone and reflexes)

He failed OAEs twice in early summer and was scheduled for a sedated ABR in October. We use speech and ASL in our family (my husband has very mild hearing loss and I have some auditory processing issues) and he has been picking up signs well. He has also started responding to sounds (not always but sometimes) and his babbling is picking up too. We are up to 4 consonant sounds, and more grunting and squeals. We got to the ABR appointment and they couldn't do it because he had fluid in his ears. The repeated the OAEs and this time, he passed them. They did soundfield testing but the results were inconclusive and they want to see him back in December for repeated soundfield and OAEs to determine whether an ABR is necessary.

They also sent us to ENT for evaluation. ENT is recommending tubes. We asked for a month to determine if the fluid would go away on its own. The month is up tomorrow. Noah is teething and sick (nose, cough, diarrhea), his sister has an ear infection, but so far his ears aren't infected (but got confirmation at his neuro appointment yesterday that there's definitley fluid in there). I fully expect to be pressured to schedule him for tube surgery tomorrow...


I have only heard about this surgery in kids with recurrent ear infections. He's only ever had one. It's not causing him pain, he's -fine-.
The doctors and nurses are advising that if the ENT recommends tubes, we should do it because language development is crucial in this period. However, I feel that the progress he's making is great and it's just an excuse. Whether he hears well or not, he has access to language, and as I said before, he's beginning to babble more. I don't really feel that "language development" is enough of an excuse to put him through surgery and anesthesia, the pain from the tubes, and complicating bathtime and swimming, when his actual "language development" is coming along. And there is NO guarantee that fluid is impacting his language anyway. So it's a surgery that -may- benefit his auditory and verbal skills but I don't know if that justifies the "cons" of putting my infant through the whole surgical mess since it doesn't seem necessary.

Sorry if I'm rambling, I haven't been able to figure all this out on my own, and I don't think my views are necessarily coming out entirely in a way that can be comprehended. What do you think? I don't know how to explain my view to the doctors and I'm not sure if there are any things I'm not thinking about re: the surgery.
Isabelle born via emergency c-section after her heart stopped 04.29.10
asthma, astigmatism, amblyopia, allergies, tongue and maxillary ties

Noah born via RCS 12.09.13
14q11.2 duplication, receptive language and adaptive behavior delays
multiple health concerns under evaluation
follow him here: www.facebook.com/lovefornoah

Re: WWYD re: Ear Tubes, Audiology, ENT

  • My kiddo had ear tubes placed from recurrent ear fluid without infections. We saw a huge bump in language right after. While there's a minuscule risk from anesthesia there is no pain or recovery period from tubes. There is no restrictions for bath time/swimming outside the first week post-op. I personally wouldn't wait until there was a more serious problem when it seems like this has been an ongoing issue to do such a minor procedure but different strokes for different folks. Good luck.
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    [Deleted User][Deleted User]katrina111111
  • I will tell you our tube experience, just regarding the surgery part.  DS #1 got them at 4 yrs old.  He was in the OR for under 10 minutes.  The worst part was letting the anesthesia wear off, which took a couple of hours, and he was cranky.  He took some tylenol that night, and was good to got the next day.  We did tubes for recurring infections, so our situation was different, but I just wanted to reassure you that the procedure is not a big deal.

    Good luck in whatever you decide. 
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    Carson Henry, born 39w, 2d, via emergency c/s due to no fetal movement and fetal distress.  Seizures, IVH grade 2, brain injury, kidney and liver damage.  Complete blood clot in the artery in his right arm.  27 days in the NICU.  Now discharged from all specialists, excepts his kidney doctor, who will monitor him indefinitely.  My tough little cookie.

  • Like PP, I noticed a difference in my son's language immediately after the surgery.  Knowing what I know, I would have scheduled the surgery as soon as they offered.  I've never met anyone who regrets this procedure.  We all wished we had done it sooner.  My son never had an ear infection either.  He had his adenoids removed at the same time because they were blocking fluid, which was affecting his hearing.  With both procedures, he was fully recovered after a few hours...like nothing ever happened.  

    As lots of questions, but I would definitely go into the appointment looking at tubes as an opportunity to really help your DS.  Did they do a hearing test?  I saw the audiology report with my own eyes that saw how little movement their was within my DS' ears.
  • I decided to go with tubes for DS a couple of months ago and he never really had too many ear infections that we knew about. His pedi and therapists wanted him to have an ABR, but I was hesitant about it and ended up taking about three months to decide to see an ENT who pointed out the fluid build up in both ears and recommended tubes. I hated the idea that he might be having trouble hearing.

    The procedure was really quick. The doctors kept us updated the whole time. He was grumpy from the anesthesia for the rest of the day after the surgery and had a sore throat, but then the next day he was fine. Other than two days of ear drops, there was no post-surgery care. He still isn't talking now, but he's a lot more vocal with his babbling. He didn't babble much at all before. And I do think he's a bit more responsive now.
    DS 10/2012
    image
  • Ds is 5 and has had two sets of tubes.  When he turned one, he started having chronic ear infections, and even when he didn't have an ear infection, we started noticing the fluid in his ears was impacting his speech.   Honestly, I never thought the procedure was that big of a deal.  Ds had his adenoids removed while he had the second tubes put in, and even with that, after a day ds was running around and playing.  We left for Myrtle Beach about 10 days after having tubes put in, and even though we had to be a little extra careful with making sure he didn't water in his ears, it wasn't like it was a big deal.

    Ds's ENT told me that the only reason they even sedate small children for the procedure is because they have to stay incredibly still.  When he's had to do it to an older child  or an adult, he just numbs the ear and does right in his office. 

     

    Good luck!

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  • My son has only had one ear infection and he is 8 yrs of. He has had ear tubes off and on since birth due to being born with a cleft lip and palate. Unfortunately we learned the hard way that if fluid is present and no tubes in place retraction of the eardrums can happen as well.

    Honestly I fought it. He had them placed in at 3 mos, replaced at 11 mos due to another surgery... They fell out around age 2 so in between age 2 - 6 we used a prescription nasal spray until we found out about language delays in kindergarten as well as damage to the ear drums. He has had another set since 6. It has been magical for him ; ) for us it was a quick and easy surgery, but it was hard choosing to sedate him when it was not around another surgery.
    Boy 1 2/06 - Boy 2 12/07 - Boy 3 9/09
  • My brother, my older son, and I all had ear tubes growing up due to infections. It was a hassle 30 years ago, but is not at all anymore. My little boy has Down syndrome, and failed his hearing tests due to fluid. Like your child, he didn't have infections. The doctor felt it was imperative for his speech and language development for him to have the tubes. The window for S & L is very small, and not something that can easily be corrected down the road. We also sign with my son, but I want him to be able to hear and speak legibly. That will make life much easier for him as he grows and learns. I noticed an an immediate difference. It was definitely worth the minimal time, discomfort, and risk. The surgery takes 10 minutes. There are no bathing or swimming restrictions. He is on his second set. If doctors recommend it, I highly recommend getting the ear tubes for your child as soon as you are able. There's nothing to fear. I don't know if your son was circumcised, but if so, know that that is a much worse procedure---arguably for mostly cosmetic purposes.
  • Assembly_ReqdAssembly_Reqd member
    Seventh Anniversary 2500 Comments 250 Answers 500 Love Its
    edited November 2014
    Late to the party, but....You got some great responses. Here is my brief 2 cents.

    1. My son has ear tubes(2 sets) and hearing loss due to genetic deletions. Ear tubes gave him an added 10 decibels on his audiogram.

    2. He was not symptomatic and had no infections or pain to my knowledge. The fluid was found on an MRI/CT scan we had done for other reasons "accidentally". It had started to compromise the mastoid cells in his skull bone. Once the skull deteriorates due to being submerged in fluid that infection can move to the brain and cause meningitis.

    3. You have a DIRECT history of hearing loss in your child's genetic makeup. The fluid is confusing the issue of being able to provide him full access to ALL sounds that make up spoken language. He deserves all the interventions you can provide him.

    4. Do it. It is a simple 5 minute procedure. They poke the ear drum and put a plastic piece of tube in. An ABR is sedated as well, why not get the tubes put in and have the audiologist do the ABR in the recovery room before he is woken up? I find it hard to believe this dual procedure couldn't be arranged. Two birds and all that jazz....

    Please let us know what you decided.

    WAY 2 Cool 4 School


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