SN FAQ: Hearing Issues

Assembly_Reqd

Welcome to the Special Needs Frequently Asked Question thread! Please feel free to also create your own post in a new thread if you need more information or support. If you do post your own thread, we want as many parents as possible in your similar situation to 'see' your question. Please be specific and include the potential diagnosis or procedure in your post title.

I am worried or being told that my child has some hearing issues.

What originally lead you to believe your child had a hearing issue?

Who originally diagnosed your child's hearing problem? What was the diagnosis or level of hearing determined? Can you explain the tesing used to diagnose your child?

What type of medical interventions for hearing did/will your child have? (hearing aids, cochlear implants, none, etc)

Are there any other interventions you are doing? (ASL, speech therapy, listening programs, school accommodations, second opinions, additional specialists)

Do you have any other advice for parents dealing with their child's deafness/hearing loss?

Soapstone

I am worried or being told that my child has some hearing issues.What originally lead you to believe your child had a hearing issue?She failed her newborn hearing screen twice. Who originally diagnosed your child's hearing problem? What was the diagnosis or level of hearing determined? Can you explain the tesing used to diagnose your child?She was diagnosed with profound bilateral sensorineural hearing loss by an audiologist when she was one month old. She did an OAE (recording the sound coming from her ears) first and when she failed that she did an ABR (recording brain activity with electrodes). She slept through both procedures.What type of medical interventions for hearing did/will your child have? (hearing aids, cochlear implants, none, etc)She has hearing aids for eight months while we waited for cochlear implants. She received bilateral CIs at 10 months. Are there any other interventions you are doing? (ASL, speech therapy, listening programs, school accommodations, second opinions, additional specialists)She gets speech therapy once a week through birh to three and sees a listening therapist from the school for the deaf. She also attends a deaf-oral preschool twice a week (www.speakmiracles.org). 

Do you have any other advice for parents dealing with their child's deafness/hearing loss?

Your child will be okay, whether you choose CIs or ASL. At 20 months old (9 months hearing) my daughter can say nearly 100 words. I am amazed by her every day. 

MaxandRuby

Assembly_Reqd:

I am worried or being told that my child has some hearing issues.

What originally lead you to believe your child had a hearing issue?  DS2 failed his newborn hearing test. Although he subsequently passed the next test, we have kept monitoring it due to testing on the very low end of normal to mild hearing loss. He is now almost 3yr old.

Who originally diagnosed your child's hearing problem? What was the diagnosis or level of hearing determined? Can you explain the tesing used to diagnose your child?  We are not sure if DS2 actually has hearing loss or not. I have seen multiple audiologists (via EI and privately) in various states (since I've moved around) but this is more on a monitoring basis.  He has tested anywhere from normal hearing to mild hearing loss, to mild hearing loss at high frequencies.  Various testing has been done. I don't know the correct names but all of the tests have involved the thing they put in the ear and whatever they are testing it shows a result on a graph that prints out (is this the tympanogram??). Other testing has included the kind where you sit in the center of a room with the child on your lap, the audiologist is in an adjoining room, they play various frequencies and talk, and the child looks/responds to the sound by looking the direction the sound is coming from. When the child responds, there is something in the corner of the room (each corner on the wall you are facing) and that lights up and/or moves. The audiologist is taking notes during the testing. The last test was something similar to the visual thing (where an item lights up/moves) and the audiologist put an earbud type thing in his ear. She showed him what to do first: he would have a block or object in his hand, when a sound played, the audiologist would move his hand to a bucket and have him drop the item in the bucket. Once he "got" what he was supposed to do, she would play various sounds and when he heard them he would drop the item in the bucket himself. Apparently this is the next step in testing after the visual thing (when the item lights up/move). He did the put the item in the bucket test because per the audiologist he was outgrowing the visual response testing. Had he not passed this last test, then he would have gone for a sedated ABM (or is it ABR??).

What type of medical interventions for hearing did/will your child have? (hearing aids, cochlear implants, none, etc)  None at this time

Are there any other interventions you are doing? (ASL, speech therapy, listening programs, school accommodations, second opinions, additional specialists)  DS2 has speech therapy but it isn't for hearing issues

Do you have any other advice for parents dealing with their child's deafness/hearing loss?

clc023

What originally lead you to believe your child had a hearing issue?

Our son failed the newborn screening test.

Who originally diagnosed your child's hearing problem? What was the diagnosis or level of hearing determined? Can you explain the tesing used to diagnose your child?

Our local Audiologist and ENT.  He had an OAE that was failed, then passed.  Then an ABR that showed Auditory Neuropathy, and then another OAE that was failed and has been failed ever since.

What type of medical interventions for hearing did/will your child have? (hearing aids, cochlear implants, none, etc)

His loss was severe to profound, he heard nothing.  We got cochlear implants for him.  The first at 12 mths, the 2nd at 24 mths.

Are there any other interventions you are doing? (ASL, speech therapy, listening programs, school accommodations, second opinions, additional specialists)

He is 5 now so he does speech at school and then speech through our university 2 hours a week.  We do minimal sign language(just for safety), saw a second ENT in New Orleans that specialized in implants and did all the testing then, saw a geneticist.

Do you have any other advice for parents dealing with their child's deafness/hearing loss?

It's scary but gets better!  Took me a long time to realize that he would be successful, it was just going to be through another route than my other children.

LydiaE2

What originally lead you to believe your child had a hearing issue?

DS was diagnosed with having a large receptive language delay.  Our developmental pedi ordered a hearing test to rule out any hearing issues as a part of DS's eval.  

Who originally diagnosed your child's hearing problem? What was the diagnosis or level of hearing determined? Can you explain the tesing used to diagnose your child?

DS's was diagnosed with having fluid in his ears and a mild hearing loss by the audiologist.  The audiologist used a machine with ear plugs that tested the movement of the tympanic membrane.   The audiologist also used three different hearing tests, one with in ear head phones, another with over the ear head phones and a third with no head phones.  All three tests played sounds at varying tones directed at different ears, the audiologist and another audiologist watched for signs that my son heard the sound (the test was designed to be run with a less than compliant child or a child with no receptive language).  The audiologists rewarded hearing a sound by playing a funny clip of an animal on the TV screen on the side of the room the sound was on.

What type of medical interventions for hearing did/will your child have? (hearing aids, cochlear implants, none, etc)

 We self referred to an ENT the day after the hearing test (though our developmental pedi would have put in a referral anyways).  DS was seen by the ENT about a week later.  The ENT recommended ear tubes due to the mild hearing lose, fluid in ears and large receptive language delay.  The surgery was scheduled for about 3 weeks later.  Surgery was a breeze, DS was back to his normal schedule the day after surgery.

Are there any other interventions you are doing? (ASL, speech therapy, listening programs, school accommodations, second opinions, additional specialists)

 DS is still doing speech and language therapy, but eliminated his receptive language delay by four months after tubes.  DS does an hour of private speech therapy and an hour of speech therapy in school.  

Do you have any other advice for parents dealing with their child's deafness/hearing loss?

Do not be put off by a less than well informed pedi on hearing issues.  My DS's former pedi attempted to talk me out of ear tube surgery during my son's pre-surgical appointment.  I disagreed with him and spoke with our developmental pedi and ENT who both agreed that a child with speech and language issues and any hearing loss due to fluid in the ears should have tubes. 

Assembly_Reqd

What originally lead you to believe your child had a hearing issue?

Nate did not pass his newborn hearing screen during his NICU stay in the hospital.

 NICU's will generally do ABR (auditory brainstem response) tests on their babies because there is a higher incidence of hearing loss in children who have spent time in NICU (3:1000). However, the ABR's done in the NICU are not comprehensive, since they only test a couple of the frequencies. Children in the Well Nursery will get OAE (Otoacoustic Emissions) tests which is a series of clicks sent to the ear and the machine measures the feedback it gets from the eardrum. This test is also a screening tool, not a diagnositic test. Hearing loss in the general population of infants has an incidence of 1:1000. Once children get to school age the incidence rate goes to 6:1000 because those children have been diagnosed after leaving the hospital due to a progressive loss or a failure on the parents part to do follow-up testing after failing or getting a 'refer" result from the newborn hearing screening. (Incidence numbers are from the CDC)

Who originally diagnosed your child's hearing problem? What was the diagnosis or level of hearing determined? Can you explain the tesing used to diagnose your child?

We had a followup ABR done in the audiologist's office. Some are stand alone operations and some are affiliated with a hospital or an ENT's (Ear Nose & Throat) office. The test takes about 45 minutes and your baby can sleep in the car seat. They will have probes put in their ears and a EEG lead stuck onto each temple.

The audiologist will typically monitor the hearing as well as deal with the ordering and upkeep of your child's hearing aids. We did not know this, but it is also a good idea to have an ENT or Otolaryngologist for your child as well. They are medical doctors and may be able to help you figure out the cause of the hearing loss. If you child is a candidate for a cochlear implant, needs ear tubes(for conductive loss due to fluid) or has atresia you will need to see them anyway.

Nate's original diagnosis was mild-moderate sensorineural hearing loss with a possible conductive component on the left side.

What type of medical interventions for hearing did/will your child have? (hearing aids, cochlear implants, none, etc)

Nate started wearing hearing aids (Oticon M60's) at 4 months old. They were about 1400 dollars each. Our price included a 3 year warranty on the aids, a 90 day replacement warranty on the ear molds(silicone inserts) and any follow-up visits in that time frame to service the aids. The ears grow kind of fast in infants. We went through about 3 sets of earmolds before our replacement warranty ran out. He has been tested in a sound booth with the aids in and it appears that his hearing level falls within normal range with aids. Our audiologist told us that the aids should last us at least until Nate is about 5-6 years old. Technology also advances, so by that time we may want another pair anyway.

We do followup hearing tests about every 6 months to make sure the hearing level is stable and not progressive.

At 18 months old, we had an MRI done to follow-up on Nate's brain abnormality(hypoplasia of the corpus callosum) and we asked to have a CT scan tacked on and extra images taken of the ear area to see the cochlea structure better and look at the ear bones. A typical MRI will not have enough slices to look at the ear structure so it is imprtant to make sure you are getting what is usually called a "CI work-up" If you child is a potential candidate for CI's (severe to profound loss) you will need this anyway. I am so glad I asked for this because we discovered that Nate had a lot of fluid in both ears and the mastoid portion of his skull had started to be damaged from the fluid sitting in there. At 20 months old Nate got ear tubes and we were able to get a 10 decible increase in hearing on one side because of it.

What other interventions you are doing? (ASL, speech therapy, listening programs, school accommodations, second opinions, additional specialists)

Because the hearing loss, we were also eligible for services through early intervention as well as from our local school for the deaf. Any hearing loss is considered deafness, so don't worry about if your child isn't "deaf enough" to attend or get services form a school for the deaf. I was and missed out on about 6 months of therapies because of it. Our early intervention service coordinator was not even aware that we qualified!

Depending on your child's and family's needs you may get a Teacher of the Deaf. Speech should be automatic, but I have heard of EI programs wanting to wait until your child has speech issues before they will give you speech. Other parents I know have had a speech therapist from about 6 months old through early intervention.

Our local School for the Deaf (Maryland) has been absolutely wonderful and the best for Nate. They have a family education department where infants, their siblings under age three and their parents can attend "school" on Monday and Friday mornings. While the children are in "Class" the parents have a Support/Education group that meets on Mondays and an ASL class that meets on Fridays. Once you child turns 2 he/she is eligible to attend school everyday from 9-12. Most schools for the deaf have a bilingual approach to education. Nate gets speech services from them as well.

Do you have any other advice for parents dealing with their child's deafness/hearing loss?

It is scary learning your child is deaf or has hearing loss. 90% of deaf children have hearing parents so you are not alone in the feeling of being thrust into a culture that you know absolutely nothing about, nor do you speak the native language! (American Sign Language) You may be feeling pressure about how to communicate with your child and honestly, no decision is the wrong one. You have to choose what is right for your family. Your child will also let you know what works best for them.

I was leary at first enrolling Nate in the school for the deaf and learning sign language because, with hearing aids, he hears like anyone else (supposedly). I was not sure about him being able to learn to talk because of his brain abnormality. I am soooo glad we learned ASL. At 2.5 Nate can say about 10 words, but he signs over 100. So, in the end, Nate has chosen what the best way to communicate is for himself.

I don't want to freak anyone out, but another thing that you should know is that hearing loss can sometimes come with other medical problems. Hearing loss can be associated with over 400 known syndromes, so it is best to follow the advice of your baby's doctor and see a specialist to rule out other medical concerns. The specialists you may want to see are:

Geneticist-about half of all hearing loss has a genetic component and you may want to visit this issue if you are planning for more children

Ophthalmologist-20 percent of children with hearing loss also have vision issues

Cardiologist-there are many syndromes that share hearing loss and heart issues

Nephrologist(Kidneys) Things that damage the cochlea can also damage the kidneys. People with hearing loss may also develop kidney disease.

I also wanted to add that Nate's hearing loss has actually been a blessing for him and our family. It opened us up to other experiences, new friends and the opportunity to learn ASL. Nate is also considered apraxic due to a brain abnormality (not related to his hearing loss) and is not talking yet. He can 'say' about 10 things. He can sign over 100 signs. For us, being a part of the deaf school and learning ASL has really opened up communication for us with our child. He will also be eligible to go to school there. The class sizes are smaller and pretty much everybody there has stuff hanging from their ears. Right now, this is the perfect place for him to learn and be accepted despite his other disabilities as well.