Special Needs

Hearing Aids

My oldest has ADHD, ODD, and speech and learning delays.  He does SP/OT/PT and behavior therapy each week.  His speech is progressing but not at the speed they expect.  Also, he is behind in learning how to read.  We've been working on phonics and noticed he couldn't hear all of the sounds as we said them to him.  Our pediatrician and speech therapist both thought it was more on the auditory processing end but referred us to an audiologist first to verify he was hearing correctly.  No one in the area will test for auditory processing until the child is 7 and mine is 6.

We had the appointment today and it turns out he has a hearing loss in the lower levels.  This is where vowels are heard.  We were told it is permanent and will require hearing aids.  We meet with the ENT next week to try to find the cause.

I have a few questions after learning this news today.  First, does anyone know of any organizations that help pay for hearing aids? They are trying hard to get insurance to cover it but said it is very difficult and they usually only cover one set.  

Second, I would assume that as a child grows they will have to get new aids.  How often does this normally happen?  The cost scares me and I know I'm going to have to change my budget so I can constantly be saving for the next pair.

Finally, any tips for getting them to keep the aids in?  My son has sensory issues and could hardly stand the headphones during the test.  I'm worried it is going to be a long battle at first.  His little brother just got glasses a few weeks ago and I'm constantly having to remind him to wear them.  I envision my days being nothing but putting glasses and hearing aids on my kids.

I'm thankful we have some answers and I'm looking forward to seeing how this is going to help him.  I will ask these questions to our ENT next week but thought I would start my research now by asking those in the trenches.

Samuel  2.26.06 41w ASD/ADHD
Eli  6.18.09 35.5w
Silas  1.25.13 35.4w 10 days NICU, allergies/asthma, gluten intolerant

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Re: Hearing Aids

  • image light52:

    We had the appointment today and it turns out he has a hearing loss in the lower levels. This is where vowels are heard. We were told it is permanent and will require hearing aids. We meet with the ENT next week to try to find the cause.

    You may not find "the cause" with one appointment. The first step in "finding the cause" would potentially be and MRI and CT scan to look at the structures in the ear and the cochlea. You also will need to continually montior the hearing to make the loss is not progressive. The ENT may want to look at if your child has trapped fluid or "glue ear". The solution for that would be ear tubes. (Nate got ear tubes at 18 months and was able to get a 10 decibel gain from them) Nate's loss is caused by genetic microdeletions. I have not been able to pin down exactly what gene is responsible. He may also have an auditory processing glitch in his brain somewhere since he also has some brain anomolies. We kneew the genetic info prior to going to the ENT. When we were having a follow-up MRI for the brain issues we ordered extra "slices" in the ear area and tacked on a CT scan(xray) to check the boney structures for the ear. (I love getting two birds with one stone!)

    I have a few questions after learning this news today.  First, does anyone know of any organizations that help pay for hearing aids? They are trying hard to get insurance to cover it but said it is very difficult and they usually only cover one set.

    Some states mandate insurance coverage, but if your employer self-insures you may be out of luck. Most states will have a hearing aid bank that people can borrow aids from while they wait for their aids to be ordered. Sometimes this bank is income based. We didn't qualify. I would also try calling your local school for the deaf and see if they can point you in a direction for options in your area. Any hearing loss is considered "deafness" so don't worry about your kid not being "deaf enough". Nate has mild-moderate loss and attends our school for the deaf which is wonderful.

    Second, I would assume that as a child grows they will have to get new aids.  How often does this normally happen?  The cost scares me and I know I'm going to have to change my budget so I can constantly be saving for the next pair.

    Nate has had the same pair of aids since he was 4 months old. The only thing we have had to replace is the silcone ear molds that go inside the ears since his ears are still growing. You son's ears may be done growing, so you will probably only have to replace the molds for wear and tear. We pay 70 bucks for two ear molds through the school for the deaf (a service provided for their students only) I think to pay for molds from the audiologist it will be around 100-ish. You usually get the first pair of molds free and you may even get a replacement set or two depending on the hearing aid contract your audiologist provides. More than likely, they will have a payment plan. Nate's aids are Oticon m160's I think. ($1400 each) They are pretty small because he doesn't need a lot of amplification and he was only 4months when he got them. Our audiologist says that they should last us until he is 6 or 7 because then we may want aids with different features. Keep in mind that the technology gets better too. I have heard of people getting aids cheaper than what we paid. I think medicare covers aids as well.

    Finally, any tips for getting them to keep the aids in?  My son has sensory issues and could hardly stand the headphones during the test.  I'm worried it is going to be a long battle at first.  His little brother just got glasses a few weeks ago and I'm constantly having to remind him to wear them.  I envision my days being nothing but putting glasses and hearing aids on my kids.

    Nate has worn his since 4 months old. Wearing them is non-negotiable. Your son will get used to them. I would start out with a timer and keep additing 20 mintues to it. Another trick is to mute the TV and any music until they have the aids in their ears. Then the volume can be turned on.

    I'm thankful we have some answers and I'm looking forward to seeing how this is going to help him.  I will ask these questions to our ENT next week but thought I would start my research now by asking those in the trenches.

    The other thing you may want to do is call your school district and see what kind of accomodations your son can get, especially if you have to wait a bit to get the aids. Seating in front of the class next to the teacher or a sound field in the room (teacher wears a mic and room has speakers) would be accommodations you can ask for. I would also discuss with your school district if they have an FM system. FM is a little boot that goes on the end of one of the hearing aids. The teacher wears a mic and her voice is delivered directly to your son's hearing aid. This may be a bit much for a kid with sensory issues, but may also be a benefit to help him focus better on the task at hand (listening to the teacher) If you don't have an IEP meeting coming up I would request one in writing to discuss how this new finding will afffect learning in school. You cna have the accommodations writting into the IEP as well as tailor some goals towards listening in particular.

    I good resource is American Society for Deaf Children. They have great publications online called 'The Advocate'. you can also join and get the magazine delivered to your home. ASDC is pro ASL and many parents have profoundly deaf children, which probably will not apply to your child, but I find their info really interesting. It is an organization started by parents who wanted a place to learn more about how to advocate for their deaf child. Good Luck!

    Hello There!
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  • We progressed rapidly to cochlear implants with our DD since her's was a trama induced loss and was profound from the start, but there are similarities here that I can comment on. 

    First, Assembly_Reqd did a great job covering your questions.  The only things I would add are:

    They make various kinds of hearing aid protective gear that keep the behind-the-ear (BTE) parts from getting lost or falling off.  There are Ear Gear, a neoprene cover that has a tether to attach to a child's clothes; mic locks, a flexible tubing that connects from the ear hook around the child's ear to the microphone so it forms a kind of circle; and otoclips that act like a tether and not much else.

    All these products are available in cute designs for kids (http://www.adcohearing.com/haa_hear_aid_acc.html), but there are the simple ones, too (http://www.harriscomm.com/catalog/default.php?cPath=49_1389).

    As far as paying, our audi has flexible payment plans to make access to sound possible for kids asap.  We qualify for TEFRA medicaid, which jumps in when our primary insurance doesn't cover things, so it may be worth looking into medicaid options in your state.  Each state is vastly different from the others in terms of coverage, so if you can't find what you need yourself, look for an Infant Learning Program (knowing your kiddo doesn't qualify, they just know tons of resources) or contact the Deaf/Hard of Hearing dept at your local school district and they can help guide you along.

    Good luck!!  This is a great group, so check back here if you need more info.

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  • You can also look into AG Bell. An awesome organization for the deaf/hearing impaired. There is a membership fee ($50 I think) each year. They give out scholarships as well as help with equipment.
  • I wear hearing aids myself (actually one Cochlear Implant and one hearing aid) but in some states the state will pay for hearing aids for children before the age of 18.  Otherwise I know in my area the Lions' club will help pay for HA's as well.  Good luck!
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  • Thank you all for your help.  I know we won't have answers as to the cause at the first appointment but we are used to that.  This child has been through a lot the past few years as we've tried to narrow down his diagnosis.  School starts soon so I'm going to contact the school after our appointment on Tues.  Right now I don't feel I have enough information to give them a clear picture of what we need.  Once I know, I will ask for his IEP to be updated.
    Samuel  2.26.06 41w ASD/ADHD
    Eli  6.18.09 35.5w
    Silas  1.25.13 35.4w 10 days NICU, allergies/asthma, gluten intolerant

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  • I'll chime in with my personal experience; once hearing aids were introduced to me (at age 3.5) I never wanted to take them off. The thrill of being able to hear was all the inducement it took for me to wear them. Granted I don't have sensory issues; but here's to hoping that just the fact that there is clear(er) sound with the h.a. and noises make more sense would be helpful in settling confusion.

    As others have commented, molds are the main thing that will need to be changed with any regularity as the ear continues to grow and change. BTEs will be the aid of choice for the growing child. Once he is old enough, he should be able to switch to ITE without a lot of difficulty since you mentioned his loss is in the lower frequencies.

    The overall cost of HAs is crazy but the trade-off is amazing. I, too, wish that there was better cost coverage offered by insurances. I've been able to, with proper care, make my HAs last for close to 10 years. And in 30 years, HA technology has come a LONG way.

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  • image KCD053109:

    I'll chime in with my personal experience; once hearing aids were introduced to me (at age 3.5) I never wanted to take them off. The thrill of being able to hear was all the inducement it took for me to wear them. Granted I don't have sensory issues; but here's to hoping that just the fact that there is clear(er) sound with the h.a. and noises make more sense would be helpful in settling confusion.

    As others have commented, molds are the main thing that will need to be changed with any regularity as the ear continues to grow and change. BTEs will be the aid of choice for the growing child. Once he is old enough, he should be able to switch to ITE without a lot of difficulty since you mentioned his loss is in the lower frequencies.

    The overall cost of HAs is crazy but the trade-off is amazing. I, too, wish that there was better cost coverage offered by insurances. I've been able to, with proper care, make my HAs last for close to 10 years. And in 30 years, HA technology has come a LONG way.

    I love that you added you experience!! Would you be willing to answer the FAQ on hearing issues too? Feel free to modify it to your situation.....:)

    Hello There!
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  • Thank you for sharing your experience.  It is always nice to hear from others who live it every day.

    The audiologist called me today after talking with others in the practice and they think and FM system would be better for him since his loss is not as huge a deficiency and really only in one range.  They are afraid that the amplification of all sounds, not just the ones he is missing will drive him crazy.  He seems to hear us just fine and went six years without anyone realizing the problem so they suggest using the system during school and therapy only.  We go to the ENT tomorrow so I will ask his opinion too.

    Samuel  2.26.06 41w ASD/ADHD
    Eli  6.18.09 35.5w
    Silas  1.25.13 35.4w 10 days NICU, allergies/asthma, gluten intolerant

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