Help me make good decisions about my child's hearing aid...
May 18, 2013 1:43 AM Subscribe
I need to learn all I can about pediatric hearing aids. Help me please.
My 6 year old son has a moderate, conductive hearing loss in his right ear and will be getting a BTE aid in a few weeks. What do I need to know? This is all very overwhelming (especially because its my child) and confusing so I look to you guys to help me sort things out. I like his audiologist, she is part of the ENT practice we see. She is suggesting the Phonak bellaro. I'm not concerned with the cost... I know they are way overpriced but the cost isn't an issue, feeling like I'm informed and can make the best choice for him is what I need right now.
What are some good resources to learn about children and hearing aids? Any tips and tricks to make this transition easier? We have been talking up his new "robot ear" and he's pretty excited, for now.... What will the reality be a month from now? What accessories do we really need? What can I do to help his teacher in the fall with the inevitable battery changing, helping him, etc. that will happen? Pretend I know nothing (which is true) and share your experiences, especially if you've been close to a child who has needed an aid. Thank you.
My 6 year old son has a moderate, conductive hearing loss in his right ear and will be getting a BTE aid in a few weeks. What do I need to know? This is all very overwhelming (especially because its my child) and confusing so I look to you guys to help me sort things out. I like his audiologist, she is part of the ENT practice we see. She is suggesting the Phonak bellaro. I'm not concerned with the cost... I know they are way overpriced but the cost isn't an issue, feeling like I'm informed and can make the best choice for him is what I need right now.
What are some good resources to learn about children and hearing aids? Any tips and tricks to make this transition easier? We have been talking up his new "robot ear" and he's pretty excited, for now.... What will the reality be a month from now? What accessories do we really need? What can I do to help his teacher in the fall with the inevitable battery changing, helping him, etc. that will happen? Pretend I know nothing (which is true) and share your experiences, especially if you've been close to a child who has needed an aid. Thank you.
The school district I work for (in California) has a contract with an audiologist who comes in periodically to assist the kids who have hearing aids and to make sure that any accommodations they need in the classrooms are met. Sometimes that means showing teachers how to change batteries, sometimes it means supplying a microphone for the teacher and a small speaker that the student can put on their desk to better hear what's going on. It just depends on what's needed. Check with the school to see if they know about something like this, but don't be discouraged if they say that they don't; if your county has an Office of Education, try there. Your audiologist will probably also be able to point you in the right direction.
Best of luck to your son!
posted by corey flood at 8:09 AM on May 18, 2013
Best of luck to your son!
posted by corey flood at 8:09 AM on May 18, 2013
Sorry for any strange typing, am on my phone but wanted to respond. I was a child with hearing aids and your talking about his "bionic" ear is great I think. My parents were pretty distressed about my having to get them and while they tried their best to be supportive, I could sense I had a "problem"...but a bionic ear is so cool and is certainly not 'problem' but a great thing to help you hear better! Also re: Phonaks -- I use that brand and am told by my audiologist -- who I trust - they are one of the most hardy brands. It's true this brand has seemed to last significantly longer than others I've tried. Finally, your son is going to be amazed once he puts it on! I was so thrilled to hear sounds I never knew existed.
posted by Lescha at 8:11 AM on May 18, 2013
posted by Lescha at 8:11 AM on May 18, 2013
Ear Gear really are a necessity for kids -- they will help keep the hearing aid on, and protect it from sweat and light rain. Otoease can help if the earmold is too tight at first, and you'll also need a few things (that should come included with the hearing aid) to keep the earmold clean and the hearing aid dry -- a cleaning stick and a little drying kit. If there's a Costco near you, their batteries are way cheaper and last much longer than any other source we've tried. Change them on a schedule, before they die.
Also, let him pick a cool color for his earmold -- they can even swirl two together -- it helps kids feel proud and excited about it, and gets them lots of positive attention from their peers. If your son is anything like mine, it will help him so much that he will really want to keep wearing it and will feel very positively about it in no time. It can be a difficult adjustment at first (particularly if there is any feedback from the earmold fitting improperly), but in no time it will be no biggie at all.
Feel free to MeMail me if you have any more questions.
posted by ravioli at 11:18 AM on May 18, 2013
Also, let him pick a cool color for his earmold -- they can even swirl two together -- it helps kids feel proud and excited about it, and gets them lots of positive attention from their peers. If your son is anything like mine, it will help him so much that he will really want to keep wearing it and will feel very positively about it in no time. It can be a difficult adjustment at first (particularly if there is any feedback from the earmold fitting improperly), but in no time it will be no biggie at all.
Feel free to MeMail me if you have any more questions.
posted by ravioli at 11:18 AM on May 18, 2013
Speaking from a US context: I'd like to nth notifying the school ASAP. Hearing aids can't always help with distinguishing sound in a crowd -- depending on the frequency and degree of his loss, an FM system (teacher wears lavalier mike, sound is piped wirelessly into the hearing aid) can help a LOT.
It takes schools time to order the right one (that is compatible with his brand/type hearing aid), so I would strongly recommend you set up an IEP evaluation immediately (if you have not already done so), so the decisions can be made and the equipment ordered before the school year ends.
If you don't get it done before the summer, it can often take a month or two for meetings to be set and held and equipment ordered, and then a few months more for it to arrive.
posted by ravioli at 11:26 AM on May 18, 2013
It takes schools time to order the right one (that is compatible with his brand/type hearing aid), so I would strongly recommend you set up an IEP evaluation immediately (if you have not already done so), so the decisions can be made and the equipment ordered before the school year ends.
If you don't get it done before the summer, it can often take a month or two for meetings to be set and held and equipment ordered, and then a few months more for it to arrive.
posted by ravioli at 11:26 AM on May 18, 2013
I got hearing aids as a child for a relatively mild hearing loss in both ears. I remember feeling really excited and special when I first got them. I had a cool gadget my peers didn't have. It was a difficult adjustment to wearing them, though. Everyday sounds like the garage door opening or the toilet flushing were unbearably, painfully loud. Talking on the phone didn't work quite right. In a restaurant all of the conversations were louder but I still couldn't always hear what my conversation partners were saying.
I ultimately gave up on the hearing aids and stopped wearing them. My mom wasn't thrilled with this since they were so expensive, but she didn't try to force me to wear them either. As an adult I still struggle somewhat with this minor hearing loss. I use closed captions on tv (I can hear the characters but I sometimes miss something and I hate that!). Nobody in my circle of friends nor work colleagues know that my hearing is anything less than perfect. I read lips somewhat, infer from context, and say "hmm? what was that?" a little more than most people.
This level of secrecy stems not from any shame about my hearing, but rather from the aggravation of a couple of friends that I did tell early on who started using that "talking to grandma" voice in conversation with me (you know, loud and slow and sing-songy.) I can't stand that, so it kept me from publicizing my condition any further.
From what I understand, hearing aid technology has improved a lot in the 20 or so years since I had mine. Hopefully your kid won't have the same uncomfortable experience that I did. Good luck!
posted by bonheur at 1:38 PM on May 18, 2013
I ultimately gave up on the hearing aids and stopped wearing them. My mom wasn't thrilled with this since they were so expensive, but she didn't try to force me to wear them either. As an adult I still struggle somewhat with this minor hearing loss. I use closed captions on tv (I can hear the characters but I sometimes miss something and I hate that!). Nobody in my circle of friends nor work colleagues know that my hearing is anything less than perfect. I read lips somewhat, infer from context, and say "hmm? what was that?" a little more than most people.
This level of secrecy stems not from any shame about my hearing, but rather from the aggravation of a couple of friends that I did tell early on who started using that "talking to grandma" voice in conversation with me (you know, loud and slow and sing-songy.) I can't stand that, so it kept me from publicizing my condition any further.
From what I understand, hearing aid technology has improved a lot in the 20 or so years since I had mine. Hopefully your kid won't have the same uncomfortable experience that I did. Good luck!
posted by bonheur at 1:38 PM on May 18, 2013
The first thing I'd suggest is to understand is that the hearing aid will not correct his hearing, the way that eyeglasses can correct a vision problem. This is the greatest misunderstanding I have to deal with as a hearing aid wearer. The aid will improve his hearing, but it won't "fix" it. You will still need to ask his teachers to make sure they are looking at him when they speak to him, enunciating, and making sure he understands instructions, etc.
Second thing is that there will be some behaviour-modification required of your son. While I've never had a hearing aid fall out on its own, I have had one pulled out while playing sports. Your son may be tempted to play with it, take it out to show other children, or it may be uncomfortable at first, and he may take it out and leave it somewhere unsafe, like lying on a table or stuffed into a coat pocket. These instruments are incredibly delicate, and dropping it or exposing it to moisture like sweat or rain can break them. They are not always easily repairable, so accidents can be costly. (You should be covered for loss or damage in the first year, but check with your audiologist, as not all of them offer this type of insurance.) So the teachers will also need to help keep an eye on whether he is playing with the device or engaging in rough activity, and possibly hold it for him if he needs to take it off for a while. (And the teachers also need to understand that it is a $3,000 device, and not just something to toss carelessly into a desk drawer.)
Eventually you forget you are wearing them, but that can be problematic too, as it's easy to step into the shower with them on, or get caught in the rain. If he is rough-housing or fighting with other children, that can also put the aid at risk. It's a tricky balance between making sure a child feels comfortable with and positive about the hearing aid and is also aware of how delicate it is, and how he will need to take special care of it. I can't wear my aids when I'm exercising or playing sport, because they bounce around too much (I wear behind the ear models).
You might consider getting an opinion from another audiologist about what hearing aid model your son could/should wear. If his hearing loss is moderate, he may also be a candidate for an in-the-ear model. (BTE hearing aids are more powerful, but when I was younger I wore ITE models, which I might suggest are an easier way to transition into wearing hearing aids, and he can graduate to a BTE when he gets older.) There may be specific reasons why a certain model is indicated, but if your son's hearing loss is only moderate, you should have more than one option to look at.
I've posted in other threads about this before, but unfortunately, the hearing aid industry is often kind of scammy, even with qualified audiologists (and I say this as a life-long aid wearer, having worked with nearly a dozen audiologists in my lifetime). It's unfortunate that the way the business model is set up, it encourages audiologists to prescribe the most expensive device. They make their money off the markup, and what you pay for a hearing aid is supposed to cover the cost of follow-up visits for adjustments and minor repairs. Just something to be aware of. It sounds like you have a good trust level with your audiologist, but it might not hurt to have another opinion before you invest $3K. I'd be a little wary if they are only recommending a single model, and not a couple of options. Or at least have a conversation with your audiologist about why he/she is not recommending other models, and what will happen when the aid breaks (because it most likely will at some point.)
Here are some links that might be helpful:
Hearing Health Foundation
Hearing Loss Association of America There are some good resources here on kids and hearing loss.
National Institute on Deafness
Center for Hearing and Communication
posted by amusebuche at 3:16 PM on May 18, 2013 [4 favorites]
Second thing is that there will be some behaviour-modification required of your son. While I've never had a hearing aid fall out on its own, I have had one pulled out while playing sports. Your son may be tempted to play with it, take it out to show other children, or it may be uncomfortable at first, and he may take it out and leave it somewhere unsafe, like lying on a table or stuffed into a coat pocket. These instruments are incredibly delicate, and dropping it or exposing it to moisture like sweat or rain can break them. They are not always easily repairable, so accidents can be costly. (You should be covered for loss or damage in the first year, but check with your audiologist, as not all of them offer this type of insurance.) So the teachers will also need to help keep an eye on whether he is playing with the device or engaging in rough activity, and possibly hold it for him if he needs to take it off for a while. (And the teachers also need to understand that it is a $3,000 device, and not just something to toss carelessly into a desk drawer.)
Eventually you forget you are wearing them, but that can be problematic too, as it's easy to step into the shower with them on, or get caught in the rain. If he is rough-housing or fighting with other children, that can also put the aid at risk. It's a tricky balance between making sure a child feels comfortable with and positive about the hearing aid and is also aware of how delicate it is, and how he will need to take special care of it. I can't wear my aids when I'm exercising or playing sport, because they bounce around too much (I wear behind the ear models).
You might consider getting an opinion from another audiologist about what hearing aid model your son could/should wear. If his hearing loss is moderate, he may also be a candidate for an in-the-ear model. (BTE hearing aids are more powerful, but when I was younger I wore ITE models, which I might suggest are an easier way to transition into wearing hearing aids, and he can graduate to a BTE when he gets older.) There may be specific reasons why a certain model is indicated, but if your son's hearing loss is only moderate, you should have more than one option to look at.
I've posted in other threads about this before, but unfortunately, the hearing aid industry is often kind of scammy, even with qualified audiologists (and I say this as a life-long aid wearer, having worked with nearly a dozen audiologists in my lifetime). It's unfortunate that the way the business model is set up, it encourages audiologists to prescribe the most expensive device. They make their money off the markup, and what you pay for a hearing aid is supposed to cover the cost of follow-up visits for adjustments and minor repairs. Just something to be aware of. It sounds like you have a good trust level with your audiologist, but it might not hurt to have another opinion before you invest $3K. I'd be a little wary if they are only recommending a single model, and not a couple of options. Or at least have a conversation with your audiologist about why he/she is not recommending other models, and what will happen when the aid breaks (because it most likely will at some point.)
Here are some links that might be helpful:
Hearing Health Foundation
Hearing Loss Association of America There are some good resources here on kids and hearing loss.
National Institute on Deafness
Center for Hearing and Communication
posted by amusebuche at 3:16 PM on May 18, 2013 [4 favorites]
Adding to bonheur as a kid I had a moderate to severe loss that was not stable. So I went through a few changes in hearing aid settings. Now, I *had* to use hearing aids to function so fully abandoning them was never a thought. But, do realize that suddenly hearing things can be jarring= both physically and mentally. Your son might need breaks from his aids. A *lot* of hard of hearing people start their day w/o amplification to give themselves some wake up space.
Also, my hearing loss was always mixed nerve and conductive. I'm guessing you are going with BTE b/c of the conductive loss (the instrument vibrates the sound through your middle ear bypassing the blockage. My own conductive loss is related to ossicles that are not properly shaped/working. As I've gotten older (and had a massive nerve loss related to illness) my hearing is focused more on the nerve loss so I no longer use a conductive aid.
posted by Librarygeek at 4:26 PM on May 18, 2013
Also, my hearing loss was always mixed nerve and conductive. I'm guessing you are going with BTE b/c of the conductive loss (the instrument vibrates the sound through your middle ear bypassing the blockage. My own conductive loss is related to ossicles that are not properly shaped/working. As I've gotten older (and had a massive nerve loss related to illness) my hearing is focused more on the nerve loss so I no longer use a conductive aid.
posted by Librarygeek at 4:26 PM on May 18, 2013
I have used hearing aids since I was a small child. Please feel free to memail me if you have questions -- my experience has been that parental involvement makes a huge difference in deaf/HoH kids' ability to function "normally" in mainstream society.
I don't know if private school is a possibility for you financially, but it may be something worth considering (at least in primary school), because of the acoustics and smaller class sizes. Your audiologist may have more to say on the matter and obviously every child's hearing is different, etc, but generally open classrooms or classrooms with hard floors/high ceilings are difficult. Like others have said, FM systems can help substantially. I am not as familiar with conductive losses, but directional microphones were really helpful.
Don't bother training the teachers about changing the battery, just change it on a schedule. The money wasted in throwing away a battery 1-2 days before it's fully dead is nothing compared to what your kid might be missing in the few hours it takes him/the teacher to realize the reason he hasn't been hearing well for the past hour or so ... Ear wax can build up inside the earmold and change sound, and sweat can build up inside the tubing (especially if you live in a warm climate or if your son plays sports), so you should check those regularly. Definitely look into some kind of dessicant kit, because they make a huge difference in hearing aid life.
(One small note about Phonak and batteries ... I use Phonaks. My loss is pretty severe, so YMMV with different models, but I get very different results depending on what battery brand I use and the cheap ones often don't seem to provide enough power so I wouldn't necessarily try to save money there.)
I've had mixed experiences with deaf/HoH support groups like the HLAA when I was a kid, but they're useful to check out just to get the dirt on all the local audiologists. I am kind of a cynic about audiologists: they frequently have their own agendas for fitting or will only recommend very specific models because they don't know how to fit the others. This is something where getting a second and third opinion definitely pays off.
And seconding Librarygeek about your child might needing breaks. One thing that's very difficult to understand for non-deaf/HoH people is that "hearing" isn't so much the problem as "hearing the right things". Digital hearing aids have improved substantially in the past two decades, but they still amplify everything in a room and it takes a lot of energy to focus on someone talking to you above the sound of the refrigerator / the kid next to you crumpling paper / a car passing by outside. It can be exhausting.
posted by angst at 9:30 PM on May 21, 2013
I don't know if private school is a possibility for you financially, but it may be something worth considering (at least in primary school), because of the acoustics and smaller class sizes. Your audiologist may have more to say on the matter and obviously every child's hearing is different, etc, but generally open classrooms or classrooms with hard floors/high ceilings are difficult. Like others have said, FM systems can help substantially. I am not as familiar with conductive losses, but directional microphones were really helpful.
Don't bother training the teachers about changing the battery, just change it on a schedule. The money wasted in throwing away a battery 1-2 days before it's fully dead is nothing compared to what your kid might be missing in the few hours it takes him/the teacher to realize the reason he hasn't been hearing well for the past hour or so ... Ear wax can build up inside the earmold and change sound, and sweat can build up inside the tubing (especially if you live in a warm climate or if your son plays sports), so you should check those regularly. Definitely look into some kind of dessicant kit, because they make a huge difference in hearing aid life.
(One small note about Phonak and batteries ... I use Phonaks. My loss is pretty severe, so YMMV with different models, but I get very different results depending on what battery brand I use and the cheap ones often don't seem to provide enough power so I wouldn't necessarily try to save money there.)
I've had mixed experiences with deaf/HoH support groups like the HLAA when I was a kid, but they're useful to check out just to get the dirt on all the local audiologists. I am kind of a cynic about audiologists: they frequently have their own agendas for fitting or will only recommend very specific models because they don't know how to fit the others. This is something where getting a second and third opinion definitely pays off.
And seconding Librarygeek about your child might needing breaks. One thing that's very difficult to understand for non-deaf/HoH people is that "hearing" isn't so much the problem as "hearing the right things". Digital hearing aids have improved substantially in the past two decades, but they still amplify everything in a room and it takes a lot of energy to focus on someone talking to you above the sound of the refrigerator / the kid next to you crumpling paper / a car passing by outside. It can be exhausting.
posted by angst at 9:30 PM on May 21, 2013
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If your son is showing any speech or language issues as a result of his hearing loss, and/or if you want help with his transition into the hearing aids beyond what his audiologist provides, you can also request a speech and language evaluation from your school. This is a free service, and it is your right as a parent to request an evaluation if you have any concerns. If your son does have articulation needs or language needs related to his hearing loss, he would be able to have speech services for free from his school. Sometimes kids have mild speech issues and don't qualify for speech services in the schools, but an evaluation would be a professional opinion and would at the very least reveal any issues, even if he didn't qualify for services. (Not saying he needs them--just info for you if you had concerns.)
You sound like you are so on top of things that I hesitate to say this because I think you are probably already doing it, but if you haven't let his school know about his hearing issues, please do so. They can provide preferential seating and other accommodations for him related to his hearing issues.
Also, the summer is probably a great time for your son to adjust to a hearing aid, without being in school, assuming he has a summer break.
Good luck to your son! You sound like an awesome parent.
posted by shortyJBot at 5:09 AM on May 18, 2013