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nellyb (@nellyb)

Parent of a deaf 4 year old

Hearing Loss | Last Active: May 13, 2020 | Replies (11)

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@nellyb

Wow, thank you both for the reply.

@tonyinmi Her doctors mentioned CMV as a possibility, but also said there's no way to go back and check if that was the cause of her hearing loss. From what I understand, it's a pretty prevalent virus that most people encounter every day, so it's almost impossible to trace point of infection or even if it is the cause of a hearing loss. I can understand you wanting to advocate for CMV newborn screenings though.. maybe if a newborn tested positive, it would motivate parents to get hearing checks throughout the first year of life and help aid in earlier detection.

As far as my daughter's case, we are 99% sure we can pinpoint her hearing loss to an infection she had shortly after her 2nd birthday. She had a double ear infection and was diagnosed with the Roseola virus. Along with this came a very high fever (upwards of 103.9). We were around my two nieces at the time and they contracted the virus too, but their two doctors diagnosed it as Hand-foot-mouth disease (a sister virus to Roseola). This is an odd and gross fact about the virus… but I do remember some of my daughter's fingernails falling off a month after the infection. A quick Google search revealed that one certain strand of HFM disease can cause this to happen to finger nails- it's completely harmless to the child, but gross and bizzare. I don't think the virus itself caused the hearing loss though, since neither of my two nieces lost their hearing after contracting the virus from my daughter. I'm guessing it was a combination of the virus, plus double ear infection, plus very high fever that contributed to her hearing loss. I'll never really know for sure, and honestly at this point it doesn't really matter. Just worthy of mentioning in case others have experienced this, too.
Thank you too for sharing the parent-support networks. We are very familiar with Hands & Voices but have not looked into the AG Bell Organization yet, but I definitely will. Thank you!

@joyces Thank you so much for all of your feedback. I've never actually spoken with anyone else who has suffered from Recruitment issues, so it's very helpful to hear how it truly feels, since I think this information will only help me to better advocate for my kid. I'm so sorry that you've had such a hard time with it, and suffer from Meniere's as well. It sounds awful and I truly hope you can find some relief with your next hearing tests.

I agree with you too when you say that not all audiologists are created equal. We live in a decent sized city with plenty of ENT's, however we choose to make the hour drive to the University of Iowa for all of her hearing tests. The team there is pretty incredible, and we feel very confident with the thorough care she receives there. I have some encouraging news for you too: at our appointment last week I was told pretty confidently by the Cochlear Implant Audiologist (the one who does all of the activations) that my daughter would no longer have any issues with recruitment with a C.I. I asked her twice just to confirm, and she confidently said she wouldn't have any issues with recruitment after the implant. I can try to get more answers for you if you're interested. I'm sure you've exhausted all opportunities, but have you tried visiting a University Hospital? Our experience has been a positive one, but I can understand if you're frustrated with all of it, after 30 years of dealing with this. Thank you so much again though for sharing your experience- I really do appreciate it.

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Replies to "Wow, thank you both for the reply. @tonyinmi Her doctors mentioned CMV as a possibility, but..."

NellyB, I'm more than two hours away from the largest city in Oregon (Portland). Although it's not a large city, it has become a sort of hub for vestibular disorders, like Meniere's. During the early and mid years of NASA's space program, Dr. F. Owen Black of Portland's Vestib Center tested all astronauts before and after each flight. He had THE state of the art diagnostic lab for vestibular disorders. The Vestib Disorders Assn. (international) is headquartered in Portland, now a part of the Legacy Good Samaritan complex. (Dr. Black died a few years ago.) Another Portland doctor invented the Epley maneuver (named after himself) to "fix" BPPV, a fairly common vestib problem for older adults. Each place you go requires a referral; the testing and visits to the CI Center required seeing two other docs to work my way up the referral chain!

Although I've lived for more than 30 years with only one hearing ear, I've found it far more difficult to learn to live with virtually no useful hearing many days, since the damned disease went bilateral. For the first six months, it was primarily hearing that was a problem, but then the old nausea and vomit fests began. I'm now searching for someone willing to prescribe adequate hormones for me to achieve a remission, at which point I'd be able to taper off. I'm now so disoriented much of the time, with almost no warning of when the next crisis will start, that I'm afraid to drive anywhere, so I have an appt. tomorrow morning with the clinic here that may be my last hope for a new prescription so that I can lock the damned Meniere's monster back into the closet for another long remission. I'm nearly 78, and the last remission lasted for nearly 30 years, so I believe that taking enough hormones temporarily will result in a remission for the rest of my life. I have a long history of remissions after increasing or resuming hormones, since my early 20s. My Meniere's problem is definitely sensitive to low hormone levels.

Great to hear that someone confirmed that recruitment wouldn't be a problem following a CI…but I hope to find someone who has actually experience that! The doc at the CI center presented the procedure as though it's a snap, a great miracle, ignoring my nagging concerns–but he has almost no experience with Meniere's and knows very little about it. This forum is a world of info! Lizzy had CI surgery in, I believe January and has posted a diary of her experiences. It would be invaluable if your daughter is to have a CI. I know two older folks who've had CIs, both after they hadn't been able to hear for years, and in both cases they were functional almost from the first day they were turned on. I know that it's important that your daughter join the hearing world ASAP, as it will not only help her learn but teach her to relate to everyone around her. It is soooo easy to just tune things out when you can't understand speech!

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