Repeat Hearing test tomorrow....

[lil_stinkyfeet]

I apologize for the triple post, my computer went whacky.


Ds had his hearing tested by an audiologist in Nov/Dec and he failed BOTH ears so that is what led to us putting a tube in. I had originally asked the people from EI if they would test him this time around after his tube was put in b/c my insurance won't pay for the audiologist. They just called me and said he can come tomorrow.

So, we know he is deaf in one ear but I guess I am nervous that he will fail his good ear again I know he can hear out of that ear, but I guess I am mostly afraid that if it shows any type of hearing loss that would mean he is loosing his hearing in that ear. Is that even possible? I am not sure what the point of this post is but I just kinda wanted to prepare myself for the possibility of them telling me he is still failing both ears.

When I asked the audiologist what it would mean if he got the fluid taken care of and still failed both ears, she just gave me "a look" I can't describe and said that we would then have to persue further testing.

[my3peanuts]

There are some disorders that can cause progressive hearing loss but until you know that for sure I'd just assume his hearing will be fine and the last failed test was because of all the fluid.

[daytripper75]

Good luck tomorrow. EI is so wonderful, all of those services!

My youngest is deaf in one ear and we were told to expect his hearing to come and go over the next 4 years or so. I know how nervewracking it can be. Hang in there.

[lil_stinkyfeet]

Were not actually in EI but they offered to do this for us anyways.

What do you mean that his hearing can come and go? I have never heard that before.

[daytripper75]

He has congenital Cytomegalovirus and apparently that is one of the hallmarks of the infection. The ENT just dropped that one on us during our last visit...he simply said that we would need to test his hearing every 3 months to monitor it and that we should expect it to be better at some points and worse at others and that the hearing he has at his 5 year appointment will likely be the hearing he has for the rest of his life.
How did your son's hearing test go?

[lil_stinkyfeet]

Originally Posted by daytripper75

He has congenital Cytomegalovirus and apparently that is one of the hallmarks of the infection. The ENT just dropped that one on us during our last visit...he simply said that we would need to test his hearing every 3 months to monitor it and that we should expect it to be better at some points and worse at others and that the hearing he has at his 5 year appointment will likely be the hearing he has for the rest of his life.
How did your son's hearing test go?

Oh ok, I see. We just got back from his test and they put the probes in and measured the sound waves or whatever it is they do and he failed in the right and passed in the left as expected. Then she did a test where he was suppose to drop a block when he heard a noise. She was only able to get him to recognize one pitch out of 3 I think it was. So basically we are still not sure at this point how his hearing is. She wants to see him again in May sometime. Because of his age it is hard to do that type of hearing test, I am not sure he understood what he was suppose to do. It is too hard to tell.
Thanks for asking!

[snangel]

I just have some hugs, my youngest is deaf (both "ears") I hope all works out for you...have you also been using sign of any sort?

[emlynsmom]

Hope the test went well. My DD had her second ABR today (first done at 2 wks old). She was failing her tests, which they thought was due to conductive hearing loss. We put tubes in at 6 mos and she did better but still failed in one ear - I think b/c she wouldn't sit still! The subjective tests don't work with her - she's so little and is delayed anyway (has down syndrome). They have an ABR they can do non-sedated now so we did that today. It took forever (like 2 hours) but she was a trooper. We were relieved to find out her hearing is ok! Good luck to you!

[PatchChild]

My son has hearing loss in both ears so we've also been down the road of one hearing test after another. Many hugs to you.

Yup, hearing loss can chance, increase and decrease, from one test to the next. We got lucky with my DS because he had two consistent ABR's so we have a good idea of his loss (moderate in both ears, almost identical flat line loss).

I'd strongly suggest chatting with EI and getting them to connect you with a language therapist who has a lot of experience with hearing loss, even if his other ear turns out to be just fine. It is SO important to work both listening and language skills from an easy age. We're also using ASL with my DS because there are just too many times when he can't wear his hearing aids (swimming, bath, messy dinners, nighttime). I want him to have as many language opportunities as he can.

[lil_stinkyfeet]

Originally Posted by emlynsmom

Hope the test went well. My DD had her second ABR today (first done at 2 wks old). She was failing her tests, which they thought was due to conductive hearing loss. We put tubes in at 6 mos and she did better but still failed in one ear - I think b/c she wouldn't sit still! The subjective tests don't work with her - she's so little and is delayed anyway (has down syndrome). They have an ABR they can do non-sedated now so we did that today. It took forever (like 2 hours) but she was a trooper. We were relieved to find out her hearing is ok! Good luck to you!

an ABR not sedated sounds appealing! I know they are hard. We did our first one non-sedated but he was only about 3mos old. I figured they would for sure have to sedate him if I chose to do another one.

[lil_stinkyfeet]

Originally Posted by PatchChild

My son has hearing loss in both ears so we've also been down the road of one hearing test after another. Many hugs to you.

Yup, hearing loss can chance, increase and decrease, from one test to the next. We got lucky with my DS because he had two consistent ABR's so we have a good idea of his loss (moderate in both ears, almost identical flat line loss).

I'd strongly suggest chatting with EI and getting them to connect you with a language therapist who has a lot of experience with hearing loss, even if his other ear turns out to be just fine. It is SO important to work both listening and language skills from an easy age. We're also using ASL with my DS because there are just too many times when he can't wear his hearing aids (swimming, bath, messy dinners, nighttime). I want him to have as many language opportunities as he can.

That is really interesting about the changes in the hearing tests. My ship has already sailed with EI unfortunately they don't have a Language therapist anyways, but I do have another speech therapy eval on Friday with a private therapist, I am thinking we will do services through him. We live in a pretty small town so there arn't really any type of specialists around here an ST is about the best I can get.

[emlynsmom]

Originally Posted by lil_stinkyfeet

an ABR not sedated sounds appealing! I know they are hard. We did our first one non-sedated but he was only about 3mos old. I figured they would for sure have to sedate him if I chose to do another one.

They have new equipment now that makes it easier to do non-sedated. Must be less sensitive to movement?? It takes longer but I was not going to sedate her due to some other health concerns. They had a portable DVD player so she watched her Baby Signing Time video twice through and I actually nursed her through some of it.

[daytripper75]

Originally Posted by PatchChild

I'd strongly suggest chatting with EI and getting them to connect you with a language therapist who has a lot of experience with hearing loss, even if his other ear turns out to be just fine. It is SO important to work both listening and language skills from an easy age. We're also using ASL with my DS because there are just too many times when he can't wear his hearing aids (swimming, bath, messy dinners, nighttime). I want him to have as many language opportunities as he can.

Ooo! Can you talk to me more about this? I brought it up with my EI teachers and they assured me that my ds was doing great and didn't need speech therapy at this point. I just want to know that we are doing EVERYTHING in our power for my ds. Do you know at what age they should start and if there are any good "self help" resources for parents? I'd love to have a concrete list of things I can be doing for him.

Thanks a million!

[4imprints]

Unfortunately EI has to follow a set of guidelines in order to approve a child for services or not - no matter what their diagnosis is (stupid isn't it?). However, I know that the school for the deaf that my son goes to starts seeing kids at 6 weeks old within the home and then at 18 months they can enroll in the school where they get speech five days a week.

[daytripper75]

Originally Posted by 4imprints

Unfortunately EI has to follow a set of guidelines in order to approve a child for services or not - no matter what their diagnosis is (stupid isn't it?). However, I know that the school for the deaf that my son goes to starts seeing kids at 6 weeks old within the home and then at 18 months they can enroll in the school where they get speech five days a week.

That is too bad. I'm confident that we'd be able to get him speech-language therapy through one channel or another if we decided that it was what he needed. I'm hoping to learn more about how we'd know if he needed it and what we can do for him at home.
He's *just* starting to talk and when we had him evaluated for slt he was too young to talk. They were happy with the sounds he was producing at that point so I relaxed about the issue. (We also had him evaluated before we learned that his hearing could come and go-that extra bit of knowledge is important!)

Thanks for your response!

[4imprints]

Its so worrisome isn't it? I think that is what usually puts me more into a panic than anything else....making sure I'm doing everything I can. It really does depend on the child and their loss and if there are any other issues going on. My daughter will be seven next month and we didn't discover her loss (progressive - now severe) until she was four years old. She was up to speed in her speech but I - as her mother - had noticed a few things. However, my son's loss was discovered at birth and he has a mild/moderate loss at this point. He will be three in a few weeks and he is probably a year behind in speech. BUT he also has dyspraxia. He is getting speech five days a week while my daughter only gets speech once a week and she started at almost five years old!!!!

It really really depends so it is so hard to be able to tell someone what will or will not happen and what will or will not work.

........

the one thing every single audi will tell you is to talk talk talk talk talk. Talk while you are doing the dishes, talk while you are folding the clothes, talk while you are driving to school etc. Explain everything that you are doing. Don't just use simple words - use adjectives and synonyms.

Example: If you are blowing bubbles say "oh do you see the biiiigg round bubble? Pop goes the bubble. Up up up flies the round bubble"......

[daytripper75]

Thanks for taking the time to explain further. You are so right about the panic. What should I be doing? Did I miss something? Then you don't want to do too much and make the child feel different. *sigh*

I am going to work on that talking, I know I need to do it more. We've been working on signing and need to do more with that. I got some Signing Times videos to try as a family...

Thanks again!

[lightheart]

Originally Posted by lil_stinkyfeet

My ship has already sailed with EI

if it is because your son is too old then check into the school system, they are susposed to pick up children after EI. If you can get an IEP, you can put it in that he only needs therapy without going to preschool/headstart fulltime, they aren't (or the folks around here aren't) going to tell you that you don't have to send full time, you have to ask and push for it.

Our little guy goes to a speech center 1x a week that insurance pays for and to the school 1x a week, both places concentrates on different things and the therapists have different styles of teaching which I was told was going to 'confuse' him but it has worked out very well.

[lightheart]

I've came to the conclusion that when people start talking and writing about hearing that emotions really start flying.

I'll preface this statement with... I really think it is a great thing for people to choose to go the complete non-verbal route with children who are Deaf.

but for the kids that are somewhere in between, where there is a hearing loss and they have been verbal or show the desire to be verbal, then I think that speech therapy is a wonderful thing, it takes what ability is there and expands on it.

I think this is a great resource of information
http://www.listen-up.org/

What should I be doing? Did I miss something? Then you don't want to do too much and make the child feel different. *sigh*

I don't really understand this one... make the child feel different... I've read your past posts on this thread and I don't really feel where you are coming from... I may be way off on my interpreting but if you mean that you don't want to start having your child be in a special program because they have a hearing loss, there are many kids with hearing loss that go to special programs, in a group of those kids he would be no different, would fit right in.

http://www.listen-up.org/edu/holland.htm
this is the story of "Welcome to Holland" I think it's a good read for all

[daytripper75]

Originally Posted by lightheart

I don't really understand this one... make the child feel different... I've read your past posts on this thread and I don't really feel where you are coming from... I may be way off on my interpreting but if you mean that you don't want to start having your child be in a special program because they have a hearing loss, there are many kids with hearing loss that go to special programs, in a group of those kids he would be no different, would fit right in.

No, no. With my ds I am finding it is a fine line. He is developing typically, no one would know there was a single issue in his life health-wise by looking at him or by spending (lots of) time with him. But we know that he is severely deaf in one ear and we know that he has several spots of calcification on his brain and we know that he has a 90% chance of being cognitively impaired. It's just at this point we don't know where he is going to land in the scheme of special needs. So, I don't want to be the overbearing mother who insists that her son needs every service known to man and spends hours and hours each week making sure those services are rendered but I don't want to be the mother who assumes that since everything is going so well so far that everything is fine and miss opportunities to help him.
If getting him speach therapy now will help him, that is what I want to do. I just don't want to burden him with extras he doesn't need.
Am I making more sense now?