Parent of a deaf 4 year old

Posted by nellyb @nellyb, May 4 3:49pm

Hello everyone- I just discovered this group and have read a few of the discussions already. Thank you for sharing your experiences with hearing loss. I can’t imagine the frustrations that many of you have lived with, but I am grateful for your vulnerability and willingness to share.

My daughter was born with good hearing but lost it shortly after her 2nd birthday. We didn’t identify it for 15 months though. She was able to still “converse” with us- we noticed she would watch our mouths when we spoke but we didn’t think anything of it at the time. We thought her odd behaviors were just part of her age- she would frequently ignore us or just really focus on toys she was playing with (and seemed to tune out everything around her- so we thought). I knew something was off, but everyone around me told me that she was a perfectly healthy 2/3 year old, and was probably just having a hard time adjusting to her new baby sibling. It was an extremely challenging 15 months to say the least. I questioned my parenting on a daily basis. What was I missing? What was I doing wrong? Why was she so difficult? “Maybe she’s sensitive to sugar…” “Maybe she has ADHD..” “Maybe she’s autistic…” “There’s nothing wrong with her, she’s perfectly normal…” These are all things that I would hear from the people closest to me. You can imagine the frustrations that arose in both me and in her when there was a daily breakdown of communication and we weren’t even aware of how or why. When she was finally diagnosed with sensorineural hearing loss (moderate – severe) in March of 2019 at the age of 3, it was honestly a big relief to me. Yes, we grieved her hearing loss (because it IS a loss that is worth grieving).. but we finally had answers.

Later that month we attempted hearing aids. Her response to them was so severe and awful that they didn’t send us home with the aids, and instead ordered a sedated ABR for April. The ABR revealed her hearing wasn’t as bad as we initially thought from the booth testing, so we went back in May to try the newly programmed aids. They were uncomfortable for her at first, but slowly and surely, she grew more comfortable with them.

She started preschool in the fall and her teachers attempted a Roger System. Her response to this was equally awful to her first attempt with the HA’s- severe crying, screaming and even threw the aids across the room. Her audiologists have tried a few different things but believe there’s probably a recruitment issue. We decided to put the Roger System on the back-burner and try again at a later time. For now, our goal is to get her to love school and enjoy attending. COVID has thrown a wrench in school attendance, however she does look forward to going back in the fall.

Fast forward to two weeks ago- she was playing with a soft ball and it hit her left ear. She said it broke her hearing aid. We checked the battery and cleaned it but didn’t find anything wrong. That whole evening she was asking if it was on and said that it needed a new battery. I should add that her left ear is her good ear: her right hearing aid hasn’t helped her at all (speech recognition of 10%), and we’re actually awaiting to get her right ear implanted sometime this month. When her left hearing aid all of a sudden stopped helping her, we started to get concerned. That was her only way of hearing us. The next day we drove the hour to the University Hospital to have her hearing aids checked and discovered they were working fine. They mentioned something called EVA- which can cause someone’s hearing to fluctuate with any impact to the head (hard or soft). The following week (last week) we learned from a booth test that her left ear’s speech recognition dropped from 72% in March to currently 30%.. a pretty drastic drop over the course of 2 months. So basically: her hearing didn’t decline, but her brain’s ability to process speech did. They were able to make minor adjustments to her hearing aids so she’s thankfully wearing them again. She didn’t wear them for a full week (from when the ball hit her ear to last week’s hearing test), and during that time we dove head first into learning sign language. It can only help us moving forward if there’s ever another incident with her left ear.

She will be getting a cochlear implant in her right ear this month (just waiting on insurance approval before scheduling a date). Does anyone have any experience with a 4 year old getting a C.I… specifically, one who is already sensitive to sound? The surgery itself doesn’t make me nervous, but the activation of the CI does.
Also, does anyone have any experience with EVA? I only recently learned about this 2 weeks ago so don’t know much about it aside from a few internet searches.

I apologize for the long novel but wanted to share about our family’s experiences with people who can relate. Thank you in advance for any feedback/advice you can provide.

nellyb, thank you for sharing this story. It helps all of us understand the different types of hearing loss. I am curious if the doctors ruled out Cytomegalovirus (CMV)? In Michigan, we've been advocating to get the newborn screenings to include a test for CMV. Have you looked into the Hands & Voices or AG Bell organizations? They are both a parents support network for children with hearing loss.
Tony in Michigan

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Recruitment can be dreadful…and I KNOW what's happening. I have Meniere's, had it for decades in my right ear (no useful hearing or balance function left there), eventually started wearing an aid in my "good" left ear due to age-related deafness. Then, a year ago, Meniere's went bilateral, attacked my "good" ear. I'd always been told that the level of recruitment in my right ear would make an aid impossible there, so I wasn't surprised to learn that on bad days (Meniere's fluctuates from hour to hour, confusing me and everyone around me) I simply cannot stand to wear the aid. If someone simply moves a piece of paper (no, not crinkling or crushing, just moving) it sounds like an explosion and is physically painful. No one can imagine how awful recruitment can be…unless you're one of the "fortunate" few to "enjoy" it! I understand your daughter ripping out her aids and throwing them–it's precisely what I'd like to do!

I'll get retested once this virus crisis passes as I was only 5% above qualifying for a CI in my right ear almost a year ago. However, I haven't yet found anyone who can assure me that a CI won't have the same recruitment and distortion problems that I have now with aids. A CI is not reversible, so I want to KNOW that there won't be problems with recruitment or distortion if I elect to go that route. The CI clinic has virtually no experience with Menierians, so their assurances that life would be swell with a CI didn't convince me. Yup, a real doubting Thomas, or in my case, Joyce!

Your daughter might also have distortion, which is royally frustrating: I can hear that someone is speaking, but it's just whispery or raspy noise without any discernible words. Hearing tests don't seem to do a good job, at least from the ones I've had over the years, to understanding how much if any distortion there is. Hearing beeps or very simply words is a long way from being able to understand real speech.

Also, understand that not all audiologists are created equal, regardless of how many pretty framed papers they own! I've learned that the woman at Costco, who has no fancy papers, knows more about my disease, hearing problems, and what's newly available than either of the audis or the CI doc at the hearing clinic. The Costco woman was able to adjust my single aid so that I can listen to music and hear something approaching what it should sound like for the first time in well over 30 years. At the time I first lost hearing over 30 years ago, I played in an orchestra and several ensembles but was forced to quit. Not only could I not stand the horrible sounds around me (!!!!!), but I couldn't hear clearly enough to know if I was contributing to the groups…or ruining them.

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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.

Liked by tonyinmi

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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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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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@nellyb on first reading your message I saw so many similarities to my own daughter. At age 3 she was always saying “WHAT?” to me while looking at me intently and obviously concentrating. Her pediatrician said she was very intelligent, and her mind was operating on a different level, not really listening to me, (I knew she was trying hard to hear me) and at that point, they could not definitively test for a hearing loss until around age 4, unless the hearing loss was severe. She was tested at age 4 and has been wearing hearing aids ever since. She is in her mid-30s now and except for a period in her teens when she became very self-conscious she has never had a problem.
I remember too getting additional opinions, both from Dartmouth Hitchcock which is a couple of hours away north of us in southern NH, and from one of the hospitals in Boston. They all concurred, it was a Sensorineural hearing loss, and yes we did grieve also. You want your children to be perfect and then to find out that one has a disability is heartbreaking. I do have to say though, it has not been a disability that has caused a lot of problems for her, thankfully.
The cause of my daughter's hearing loss was never determined, which they said is true in a very high percentage of hearing losses. I was not sick at all during my pregnancy, and she never had a high fever while she was an infant or toddler. It's interesting that you mention ear infections though. She did have one at two weeks old and another after that, both were asymptomatic and discovered during routine exams.

I had never heard of EVA before so I googled it – Enlarged Vestibular Aqueduct. There were not many sources that attributed it to anything other than being from a birth defect, but I did find one that hypothesized that – https://www.hindawi.com/journals/criot/2017/6195317/. This source is located in the United Kingdom and they often do have some very informative and knowledgeable data from what my non-medical, uneducated person can ascertain. There may be other articles about this too if you delve deeper than I did.
Regardless of how you label the recent hearing loss, losing speech comprehension is a very difficult thing, one I am having a problem with myself now. I started wearing HAs in the early 2000s and now things have deteriorated in my comprehension also. HAs can correct loss of sound but are not nearly as good at helping with comprehension. Getting a CI in the other ear should help to compensate for the loss of word recognition in your daughter’s left ear. I am reaching the point where I will need to consider a CI myself.
The important thing to remember is that there are so many worse things than this that she could be dealing with. My daughter is a happy person, married and with a huge “tribe” of friends, and successful in her career. That’s what we really want for our children, and the hearing loss has not inhibited that. Although as I mentioned, in her teens she went through a brief time of self-consciousness (teens can be cruel if they see an easy victim, and my daughter was extremely shy, so an easy target) by the time she was in college that was completely over of course.

If there is anything I can do for you please just say so, although not having experienced either her type of loss or Cis, I suspect there is not, unless it is with simply dealing with her loss.
JK

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@joyces

Recruitment can be dreadful…and I KNOW what's happening. I have Meniere's, had it for decades in my right ear (no useful hearing or balance function left there), eventually started wearing an aid in my "good" left ear due to age-related deafness. Then, a year ago, Meniere's went bilateral, attacked my "good" ear. I'd always been told that the level of recruitment in my right ear would make an aid impossible there, so I wasn't surprised to learn that on bad days (Meniere's fluctuates from hour to hour, confusing me and everyone around me) I simply cannot stand to wear the aid. If someone simply moves a piece of paper (no, not crinkling or crushing, just moving) it sounds like an explosion and is physically painful. No one can imagine how awful recruitment can be…unless you're one of the "fortunate" few to "enjoy" it! I understand your daughter ripping out her aids and throwing them–it's precisely what I'd like to do!

I'll get retested once this virus crisis passes as I was only 5% above qualifying for a CI in my right ear almost a year ago. However, I haven't yet found anyone who can assure me that a CI won't have the same recruitment and distortion problems that I have now with aids. A CI is not reversible, so I want to KNOW that there won't be problems with recruitment or distortion if I elect to go that route. The CI clinic has virtually no experience with Menierians, so their assurances that life would be swell with a CI didn't convince me. Yup, a real doubting Thomas, or in my case, Joyce!

Your daughter might also have distortion, which is royally frustrating: I can hear that someone is speaking, but it's just whispery or raspy noise without any discernible words. Hearing tests don't seem to do a good job, at least from the ones I've had over the years, to understanding how much if any distortion there is. Hearing beeps or very simply words is a long way from being able to understand real speech.

Also, understand that not all audiologists are created equal, regardless of how many pretty framed papers they own! I've learned that the woman at Costco, who has no fancy papers, knows more about my disease, hearing problems, and what's newly available than either of the audis or the CI doc at the hearing clinic. The Costco woman was able to adjust my single aid so that I can listen to music and hear something approaching what it should sound like for the first time in well over 30 years. At the time I first lost hearing over 30 years ago, I played in an orchestra and several ensembles but was forced to quit. Not only could I not stand the horrible sounds around me (!!!!!), but I couldn't hear clearly enough to know if I was contributing to the groups…or ruining them.

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Hi Joyce’s. I always hear about recruitment but do not understand what that term is. Thanks for your help!

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@scottk

Hi Joyce’s. I always hear about recruitment but do not understand what that term is. Thanks for your help!

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You're fortunate to not know about recruitment first hand! I don't really know how much it adds to the distortion, but much of the time I can hear that people are speaking with zero understanding of what they're saying…lots of whispery, raspy noise punctuated by explosions of sibilant sounds.

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@joyces I really hope you are able to find some relief soon and speak with an expert who can truly help you. Truly- my best wishes and prayers are with you.

@contentandwell Thank you so much for sharing your daughter's story and success with hearing aids. I will say that although I initially grieved the diagnosis, her hearing loss is not something that saddens me. I just view her hearing loss and hearing aids as part of her now, and I celebrate all of her. I believe she can and will be a confident and happy child and adult. It sounds like you believed the same for your daughter. Thank you again for sharing your family's story. And for the link on EVA- will definitely check it out.

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Do you believe in miracles?
My husband and his family were being evacuated from a war torn country to freedom. The drunken driver overturned the truck. My husband’s mother and father frantically searched for their younger son. He was under the truck. (Concussion 🤕)

My mother-in-law and her injured son were taken back to a hospital where my mother in law posed as one of the nurses while her son recuperated. His father and brother came back later not knowing if this son survived. He did!😇😍

There were always low expectations for my husband.
Someone said that he would “probably sweep the streets”.

When they came to our wonderful USA, a science teacher took an interest in my quiet husband, saw that he loved animals and asked him to help care for the classroom pets. This teacher also taught mathematics and saw my husband’s potential and encouraged him.
My husband graduated at the top of his high school class.

He went from a boy who would “sweep the streets” to graduate from RPI, MIT, and earn a PhD from
Carnegie Mellon.

I DO ask him to SWEEP the leaves.
He bought a leaf blower!

Deo gratias.

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@helenfrances

Do you believe in miracles?
My husband and his family were being evacuated from a war torn country to freedom. The drunken driver overturned the truck. My husband’s mother and father frantically searched for their younger son. He was under the truck. (Concussion 🤕)

My mother-in-law and her injured son were taken back to a hospital where my mother in law posed as one of the nurses while her son recuperated. His father and brother came back later not knowing if this son survived. He did!😇😍

There were always low expectations for my husband.
Someone said that he would “probably sweep the streets”.

When they came to our wonderful USA, a science teacher took an interest in my quiet husband, saw that he loved animals and asked him to help care for the classroom pets. This teacher also taught mathematics and saw my husband’s potential and encouraged him.
My husband graduated at the top of his high school class.

He went from a boy who would “sweep the streets” to graduate from RPI, MIT, and earn a PhD from
Carnegie Mellon.

I DO ask him to SWEEP the leaves.
He bought a leaf blower!

Deo gratias.

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I forgot !! To tell you that my husband had a burst ear drum!.from the accident.. hearing loss!
His ear was repaired many years later when it became infected.
A piece of his skin was used to cover the hole in his ear drum!
His hearing is MUCH improved but not 100%

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@helenfrances

Do you believe in miracles?
My husband and his family were being evacuated from a war torn country to freedom. The drunken driver overturned the truck. My husband’s mother and father frantically searched for their younger son. He was under the truck. (Concussion 🤕)

My mother-in-law and her injured son were taken back to a hospital where my mother in law posed as one of the nurses while her son recuperated. His father and brother came back later not knowing if this son survived. He did!😇😍

There were always low expectations for my husband.
Someone said that he would “probably sweep the streets”.

When they came to our wonderful USA, a science teacher took an interest in my quiet husband, saw that he loved animals and asked him to help care for the classroom pets. This teacher also taught mathematics and saw my husband’s potential and encouraged him.
My husband graduated at the top of his high school class.

He went from a boy who would “sweep the streets” to graduate from RPI, MIT, and earn a PhD from
Carnegie Mellon.

I DO ask him to SWEEP the leaves.
He bought a leaf blower!

Deo gratias.

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@helenfrances Your son, like my daughter, was overlooked and thought to be less intelligent than they were, due to their hearing. There were a few things that she should have been part of but she was overlooked because her hearing loss tended to make her quieter in class so that quietness was mistaken for not being as intelligent as she is.
I kick myself for not advocating better for her when she was in middle school and HS, but it is what it is and she has done well.
JK

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