Special Needs
Isalupup
member
High frequency hearing loss
Isalupup
member
My son who is already in ei for a motor delay and who has a medical history including hydrocephalus. Today he tested to have a high frequency hearing loss in the moderate range. This was established thus far with behavioral testing. I have a number of questions ( please forgive the formatting I do not have a standard computer).
1) Our next step is a sedated ABR. Do you have experience with this? What is it like? How accurate is it?
2) I have been pushing ei for speech but they have been saying he is too young (16 months) how might I better advocate to get speech therapy? Might their opinion change given the hearing loss?
3) Should I put away toys I worry are too loud to protect his hearing (like the fisher price lil zooms car ramp)?
4) Does anyone have experience with this type of hearing loss did they use hearing aides to amplify sound.
I'm sorry if this is not well composed or thought out, this is new. I realize I should have spoken more with audiology but the appointment was so quick. Thank you!
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Re: High frequency hearing loss
I wish I could be of a little more help.... But I can at least answer one of your questions.
My oldest, Layla, had a sedated ABR when she was about 3. She was brought into the surgical suite, put on a gown, and they took her back. They started an IV in the OR. They did the test in the OR because she was put under and needed monitoring by a nurse. It lasted about 2 1/2 hours, but can last up to 4 hours. The test is very accurate, but the person reading the results has to know what they're looking for. In Layla's case, the test results were read wrong. They said she was fine, but a second opinion found that she had moderately severe hearing loss. She does have hearing aides, but her hearing loss is sensorineural, so I can't be of too much assistance on the amplification. I HTH a little bit!
I am working on a reply... The inlaws will be here in T-minus 2 hours!! I must finish cleaning.......
My DD has moderate unilateral sensorineural heairng loss and wears a hearing aid. She had her ABR at 10 months. It took a little over an hour. It actually wasn't that bad in terms of being put to sleep. She didn't have an IV or anything, just drank something that put her to sleep. The hardest part was the fasting before. We stayed in the room with her the whole time while the audiologist performed the ABR. I know it is difficult to have your LO go through it, but really the ABR is pretty easy. The ABR will definitely be able to tell you if there is a hearing loss as it measures the brain response to noise.
If your son is found to have hearing loss, he will definitely be monitored frequently for speech problems and should have no problems getting EI if he qualifies.
As far as toys, I have heard that if you think the toy is too loud (aka if it hurts your ears), then it will probably be too loud for your kid. You can just put a piece of tape over the speaker and that should help muffle the sound. Not a bad idea for a lot of loud toys, in my opinion. https://www.sightandhearing.org/news/healthissue/archive/hi_1108.asp
Good luck!
1) Our next step is a sedated ABR. Do you have experience with this? What is it like? How accurate is it?
2) I have been pushing ei for speech but they have been saying he is too young (16 months) how might I better advocate to get speech therapy? Might their opinion change given the hearing loss?
3) Should I put away toys I worry are too loud to protect his hearing (like the fisher price lil zooms car ramp)?
4) Does anyone have experience with this type of hearing loss did they use hearing aides to amplify sound.
Our son, Nate was diagnosed at 6 weeks old and has had hearing aids since he was three months old. He has mild-moderate sensoneural hearing loss and therefore is not a candidate for cochlear implants.
1.) We have not done a sedated ABR, but Nate has been sedated for MRI's, CT's and ear tubes with no problems. I do not have any experience with what they do for an ABR since he just slept in his carseat. It seems like it can vary from hospital to hospital. The ABR is pretty accurate, but you really need to continually monitor hearing loss to make sure it is not progressive loss. Nate has hearing tests about every 4-6 months. We also get hearing tests done from more than one source which makes me feel better about the results. The ENT did a couple because we had ear tubes put in. We also go to the audiologist where we purchased the aids from. I have since learned that she was not as experienced as I would want so you need to check on their experience treating pediatrics, not just a bunch of geriatrics. We also attend our local School for the Deaf and we have had testing done there as well. Even though ABR is probably the most accurate, behavioral testing is also beneficial because you are also testing listening and not just hearing.
2.) Because of the hearing, loss we qualified to attend our local school for the deaf's early education program and it is the best service by far. Nate gets some of his speech services there. If you have one local to you, check and see if they have an infant program. Don't let the word "Deaf" in the title turn you off or make you think your son does not belong. 90% of children who are deaf have hearing parents. Deaf means you have hearing loss not that you cannot hear anything at all. Many people who consider themselves deaf actually have residual hearing.
As far as speech therapy, I had to request it. Even though Nate has other issues than just deafness, I knew they would be more resistant if I asked before 18 months, so I just waited until then since we were getting services at school. We have been getting some speech at school but it was only 15 minutes 2 times a week in a group settting and I am not there in the classroom. Have EI come and assess your son. If he has the percentage of delay in speech they are looking for (most look for 25%) then he will qualify. It is somewhat of a lengthy process so get started now. They usually have something like 30 days to assess after you call and then another 30 after the assessment to assign a therapist to you. I am not sure if just saying hearing loss will get you ST, but it seems like every county and state is different. I know another moderate hearing loss boy who had an EI SLP seeeing him starting at 4 months old...Go figure....
3.) I honestly do not worry about this stuff. If it is 'too loud' for you it may be 'just right' for your son. I used to worry about playing my favorite songs in the car too loud, but meh..Nate can't really hear it that well anyway without his aids, so I sing away.
4.) They will probaby offer you hearing aids and they will be set to amplify the freqencies that your son needs. You can also look into if your state has a hearing aid bank. You can borrow hearing aids from them until you decide what kind to get or while you are saving up to buy them since most insurance does not cover hearing aids. Nate has had aids since he was 3 months old and his loss is along about the same line in the audiogram. Originally, he tested as having better hearing in the upper frequencies, but since then we have got better and better behavioral testing from him and are confident that the original ABR was questionable in that area. The ENT thought the Audiologist should have tested those frequencies again when she did the ABR....yada, yada. We have adjusted the settings on his aids for his most recent tests after he had his tubes put in. We have also tested his hearing while he is wearing his aids and are pretty confident that with them he hears within a normal range. I guess the moral of all that I have been spewing is that you will be testing his hearing a lot and don't think that one test is the end-all be-all. Circumstances can change.
There is a great simulator on this website that will help you and your family better understand what your son can hear in different situations. It was very eye-opening for me.
https://www.betterhearing.org/hearing_loss/hearing_loss_simulator/index.cfm
Feel free to ask any more questions!
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This is a good website.
https://www.deafchildren.org/
It is the American Society for Deaf Children and was set up by parents of children with hearing loss. They have a little question answer area that is good.
Here is another....
https://www.gallaudet.edu/Clerc_Center/Information_and_Resources/Info_to_Go.html
You will learn that there are "two camps" in the hearing loss/Deaf world, and sadly, it is hard to belong to both at the same time. The two sites I have posted are both more in the sign language camp. Galluadet is a Deaf University outside of DC. Hopefully some can post a couple of Aural sites for you. Here is one, John Tracy Clinic, I googled that I know a couple of parents in out parent group have used
https://www.jtc.org/
I encourage you to look into your options for education and if you want to go and all "aural" route(speech only), all sign language(ASL) route, or something in between. You do not have to decide now. Many children do fine in a mainstream school setting with an interpreter (if needed) or with just their hearing aids as support. We sign and use speech at our house and are waiting to see what kind of learner Nate becomes. His motor planning sucks due to other issues so he is not much of a signer or a talker at this point...It is pretty obvious that he is more of a visual learner and is very attentive to people signing. He is not too attentive to Mommy talking!! I think it is the age though.
Here is a great website to learn some signs. It is very trendy right now to use sign language with your child so you be right up with the Joneses on this one...Her FAQ section is pretty good and explains some of the myths out there about speech being delayed because of signing.
https://www.babysignlanguagedictionary-mysmarthands.com/Baby_Sign_Language_Dictionary_-_My_Smart_Hands.html
I also found this helpful in explaining how to read an audiogram
https://www.coloroflanguage.com/Resources/Audiograms.pdf
Honestly, I have learned the most from Maryland School for the Deaf's Family Education Program. They have parent groups on Monday and Friday mornings. While our children are in "school", we meet and have topics to learn about or discusss on Mondays. It is nice to talk to other parents who are dealing with some of the same stuff you are. On Fridays we have an ASL class. All this is free, which just adds to already awesomeness of the school. Good Luck!
DS has moderate to severe high frequency hearing loss. He is in speech therapy 2x per week for 30 mins which is through EI. I do not know what state are in but my coordinator for EI has told me the fact that he has hearing loss whether it be mild or profound he automatically qualifies for EI and speech therapy. DS is now 18 mths he has was aided 2 wks after his first birthday. We are going the aural route and he has almost caught up with his age group. What worked for me is I work with him around the clock with all the information I get from his therapist and from John Tracy org. Everything is a learning opportunity for kids on a whole so I jump at every opportunity to teach him something and he is responding very well.
John Tracy is a good organization, I think OP gave you the web site, they are very helpful and they offer a course that you can do online or have them send you the material each month--this course will just teach you how to teach your child.