So frustrated re: hearing issues — The Bump
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So frustrated re: hearing issues

We just got back from the ENT specialist, whom I did not like.  He gave me outdated info, which really makes me question his competancy in this area.  We got a hearing test on DDs left ear which was fine.  They did not test her right ear because there is no external ear canal.  The doctor said that because the hearing in her other ear is fine, it is not worth sedating her for an ABR.  We have to go back every 6 months to have her left ear retested.  He also said something about a program in Maryland that would be able to do the hearing tests but we are in Pennsylvania and he didn't give me the correct name of the program so I can't find the equivalent for our state.  Maybe EI?  Do they do stuff like that?  He said it was a government program that would be free because that's what our tax dollars are for.  Also, anyone have an ENT doctor in MD that they love?
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Re: So frustrated re: hearing issues

  • That is so annoying and frustrating.  I am in CT, and also have an ENT that I don't love, but he comes recommended by 2 professionals I trust.  Anyway, now that we have tubes, and my little man's hearing is still not 100% we are being referred back to EI for audiology services.  Maybe MD is the same?

    Hope that helps. Good luck!

  • Is he saying EI as in "early intervention". Some districts give audiology services. Our local program does not. 

    If you're in PA, can you go to any of the major children's hospitals near you? I've personally been working with Nemours in DE and they've been amazing for our family. There's also CHOP, though, which I've heard good things about in terms of their Cochlear Implant program. 

    Also, does LO have an aid in the ear that has no external ear canal? I was actually speaking with the audiologist at one of local children's hospitals about this last week. DD has incredibly small ear canals and after eight months of non-stop really hard pushing we're finally get aids. The audiologist mentioned they'd done this method (they have to shape it differently) for two other who had no ear/ear canal. So apparently it is possible! 

    Wishing the best for you and your LO! 

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  • If you are in PA, go to CHOP - Children's hospital of Philadelphia audiology.

    Or you can go to St. Christopher's but I'd recommend CHOP

  • We are in PA but we have Maryland insurance so we need someplace in Maryland.
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  • I'm really sorry.  To me it sounds like your instincts about this ENT are good.  Can you pursue an audiologist instead?  They would have more specific, current, detailed strategies for hearing issues specifically, since ENTs cover a lot more territory.
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  • Can I ask what the outdated info is that he told you? (just curious)

    We have not been to the ENT here (in Baltimore) yet, but we have an appointment with a Dr. Stacy Ishman at Johns Hopkins coming up. 410-955-1686. We were referred to her via our Developmental Pediatrician in the CP/ Brain Injury Clinic. The good thing about going to a large facility like Johns Hopkins is that everyone is looking at the same medical chart. This is great if you are seeing multiple specialties (probably the same sit. at CHOP too for all you CHOP fans)

    Nate also gets audiology services through Maryland School for the Deaf (in Columbia) which are free to us. Is there a school for the deaf in PA you could access? I emailed the Audiologist there and asked her if they did services for non-residents. She is really busy right now though because she is covering both campuses until their new audiologist starts. (Frederick and Columbia)

    We also still have the audiologist that first diagnosed Nate's hearing loss and provides his hearing aid contract. We really like her. Dr. Jennifer Bentley at the Hearing Assessment Center 410-583-7021. They have four offices and the one we go to is on York Road right off of 695. Good Luck!

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  • Answered back :)
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  • My DS was just diagnosed as hearing impaired.  He is 2.  For my own sanity, I was quickly scrolling through posts that I felt were related to my DS' diagnosis when I came upon yours.  

     I am in Central Jersey.  I have taken my DS to CHOP for hearing tests.  They are fine, but not great.  I had a better experience at RWJ - Children's Hospital.  I am not sure about the MD area.

     What I wanted to write though, was to push for an ABR.  I didn't push hard enough and when I finally put my foot down, 2 years after DS' birth, I demanded an ABR and it was then that I found out DS had permeant hearing loss.  Prior, I was always told to wait for fluid to clear or re test in a couple of months.  I would suggest you tell them you want an ABR and not stop until you get one.   

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