Speech questions!! **UPDATE in 10**

[2boyzmama]

I know there are some speech "experts" on here, so help me out please!!

Connor has mild-moderate fluctuating conductive hearing loss due to canal atresia/stenosis (growing out very nicely), smaller than normal ear drums, repeated infections (seriously I can't count how many he's had), and chronic fluid due to a palate issue. He does not wear aids for a variety of reasons, but mostly because his loss is so variable, and he has had "normal" audiograms from time to time.

He also has apraxia.

His classroom has been using a wall mounted amplification system during class, but his speech therapist started using an "auditory trainer" (personal FM system) during one-on-one sessions.

When he uses the auditory trainer/personal FM system, his speech is *MUCH* more intelligible, he got 90% of final consonants /t, p, f, n/ which is HUGE for him! He also was able to imitate most consonants in isolation, and some vowels (had a lot of trouble with long vowels, but did well with short vowels).

What does this mean? Why can he speak more clearly with a personal FM system?

I have been suspecting for a LONG time (well, his whole life!) that his hearing is much worse than the audiogram shows. His behavior suggests it, his speech patterns suggest it, and my mama gut just tells me that we're not addressing his hearing adequately. Does this support that? Does the fact that he responds really well to a personal FM system suggest that his hearing may be worse than the tests show?

His speech therapist was so surprised at how well he did, she used it for a few sessions, then didn't use it, then used it again and said that there was a noticeable difference.

Is this just a case of getting a 3 year old to focus? Is this a sign of an auditory processing issue? Or is this a sign of a hearing problem that's worse than we think?

I'm taking this info to his audiologist and ENT next week, so we'll see what they say.

[fairejour]

First off, my daughter's aural rehab specialists say that a child can NOT be dx'ed with apraxia OR an auditory processing disorder until they have been hearing all sounds in the speech banana for a minimum of 3 years.

Your guy does NOT fit that discription. That is where I would start!

[2boyzmama]

Originally Posted by fairejour

First off, my daughter's aural rehab specialists say that a child can NOT be dx'ed with apraxia OR an auditory processing disorder until they have been hearing all sounds in the speech banana for a minimum of 3 years.

Your guy does NOT fit that discription. That is where I would start!

I asked the SLP about that when she diagnosed him with Apraxia. First of all, almost all the published data about his genetic syndrome says that Apraxia is a mis-diagnosis, and the speech issues are almost always compensatory glottal stops combined with severe velopharyngeal insufficiency and/or an undiagnosed and unrepaired submucous cleft palate.

BUT...he shows no signs of VPI with speech (he has shown it with swallow, but not with speech), he has only very subtle signs of a submucous cleft, and he doesn't appear to use any compensatory glottal stops. Instead, his speech patterns are near text-book Apraxia.

I also asked about his hearing, and whether the fluctuation could be causing his speech issues and the SLP said "well certainly clear consistent access to speech sounds would benefit him, keep on top of the audiologists about that."

Sure thing, I'll keep on top of them...but his last audiogram was 20dB across all frequencies. Yet the one three months before that was mild-moderate at 250, 500, and 1000, 20dB above 1000. He almost always shows mild loss at 250 and 500, but those aren't in the speech banana.

UGGGHHH!!!!

What I really want is just to aid him and see what happens. If it doesn't help, then it doesn't help, but at least we tried!!!! They keep telling me that it's not worth risking damaging his ears, which I understand, but is it worth leaving him like this when we could potentially be helping him with something as simple as hearing aids?????

What do you do with a kid who has fluctuating borderline loss like this??

[fairejour]

I think that if the FM helped that woulod be a clear sign that he needs amplification. What do you think of the audiologist you see? Is there room for a second opinion? What did his ABR say?

[2boyzmama]

Originally Posted by fairejour

I think that if the FM helped that woulod be a clear sign that he needs amplification. What do you think of the audiologist you see? Is there room for a second opinion? What did his ABR say?

He hasn't had an ABR. And I might be wrong, I haven't read much on them, but would it show a purely conductive loss? When they put a BAHA on him in the sound booth, he has only a 5-10 dB loss, so there's no sensorineural component of his loss. If the sound gets into his ear, he hears it. It just doesn't get in there consistently.

He has seen different audiologists for individual hearing tests, but this time I'm going to sit down with them and go over every single test (I have them all) and see what they think of the pattern of his loss. Every time I've been told "this test doesn't show aidable loss" and even when I mention his history, they've always said that the loss is too mild, not in the speech banana, or too fluctuating. At one point his loss was a bit more consistent, but his ear canals weren't big enough for an aid, and I was told a BAHA wasn't used for mild losses.

Grr.

We'll see what they say Friday. I have the notes from his speech therapist showing his response to the personal FM system, hopefully that'll be taken into account.

[fairejour]

The ABR would show a conductive loss (I'm pretty darn sure), and it would be free of the "subjectiveness" of his booth test. Also, what is this about not aiding anything out of the speech banana? Miss Kat was aided from 250 hz all the way up to 8000 hz.

There are other bone conduction hearing aids that don't require a severe loss. Have you looked at a traditional bone conduction aid? (The ones with a metal headband?)

Oh, and with the bone conduction aid, isn't there ZERO chance of over amplification? I didn't think that was possible with that kind of aid.

[2boyzmama]

Originally Posted by fairejour

The ABR would show a conductive loss (I'm pretty darn sure), and it would be free of the "subjectiveness" of his booth test. Also, what is this about not aiding anything out of the speech banana? Miss Kat was aided from 250 hz all the way up to 8000 hz.

There are other bone conduction hearing aids that don't require a severe loss. Have you looked at a traditional bone conduction aid? (The ones with a metal headband?)

Oh, and with the bone conduction aid, isn't there ZERO chance of over amplification? I didn't think that was possible with that kind of aid.

I have read so much contradicting information!! When I ask about aiding the consistent mild loss at 250 and 500 hz, I'm told that it's outside of the speech banana, so an aid wouldn't be helpful. When I asked about a bone conductive aid, I was told that it couldn't be programmed for specific frequencies, and that there was danger of over amplifying the frequencies that he has normal hearing at.

I don't get it. I just know that I'm very frustrated by it all! And this is at a large children's hospital, so it's not just a regular dr office or even just an ENT office, this is a top-rated otolaryngology department at a large university children's hospital.

His appt is early on Friday, so even if it means that I make them late the entire rest of the day, I'm going to make sure that every one of my questions is addressed. It's obvious to everyone that he struggles to hear, and I want something done about it.

[momtoalexsarah]

This is a big issue with Megan - in the booth she shows 15-25db loss depending on the frequency. When they use the plugs the show shows at 5dbl loss on the left side. We haven't tried an FM system but it is something that I am looking at for her next year in kindy. Her speech is getting better, but is seems "lazy" if you know what I mean - slightly slured - not sharp and crisp. Adding to that is the "T' sound - the only one left out of her repetoir - she will sub "C" 'B" "P" into the word after you say it and we are not sure if she is hearing it right - I may need to record some simple verbal instructions and run them through a set of ear buds see how she does. Megan also did very well went the tested with a headpiece that works like a bone conduction aid - she was showing the same 5dbl loss on the left.

[LynnS6]

Originally Posted by 2boyzmama

I have read so much contradicting information!! When I ask about aiding the consistent mild loss at 250 and 500 hz, I'm told that it's outside of the speech banana, so an aid wouldn't be helpful.

250 to 500 hz is directly in the speech area for many sounds (most nasals, like "m" and "n" and quite a few vowels, and stop sounds like 'b'). How loud does it have to be form him to hear in this range.

Sorry I don't have my acoustic phonetics books here so I can't be more specific, but the range of speech sounds is ~250 Hz. to 5000 Hz. If he's missing 250-500 hz, he's missing a lot.

[2boyzmama]

UPDATE:

We saw the ENT this morning and I talked about all of this with him. He understood all of my concerns, and said that he actually had been thinking some of these thoughts, but wanted to wait until Connor go to school age and see how he reacted in the school environment. When I pointed out that preschool is all about setting the base for early reading, and that Connor not being able to hear the difference between "s" and "f", plus dealing with the oral motor issues to even form the lip, mouth, and tongue correctly...this mild fluctuating hearing loss does become an issue. He agreed with me.

So for now Connor is getting a personal FM system with a traditional mold. The ENT thinks that his canals are big enough for a good fit, and that his infections are infrequent enough now that a traditional mold will be fine.

He did consider a BAHA softband, and even a BAHA anchored, he said he did some research and talked to some other 22q experts about the specific learning disabilities and auditory processing issues that are so common in his syndrome. He thinks that an anchored BAHA could help, but not to the extent that it justifies the surgery. I agree, especially if he can wear a mold now. But I'm glad that he considered it, I like to see that all options are being looked at.

He said that he thinks Connor should wear the personal FM most of the time at school, minus recess, gym, and free play time (because it will block out a little bit of the peer interaction, and it's important that Connor have full access to his peers' speech when he's doing free play). But when it's circle time, library time, worksheet time, etc...anytime that he needs to focus on the teacher's voice then he should be wearing it.

Also at home. He should wear it during family dinner time, if we read books before bed, if we're in the car, if we are in a crowded place, etc...anytime that it would be advantageous for him to not have to filter out environmental sounds.

Now we have to figure out insurance. I have no idea if this will be covered by either our primary or our secondary insurance. The ENT referred us to a specific audiologist (who thankfully is at the children's hospital in our town instead of the one nearly 2 hours away). He said that he would be sending the referral this afternoon and we should hear from her next week to get fitted for the molds and to talk specifics. He also said she can help with the insurance questions.

Whew! I feel like we're moving forward now...we'll see where this takes us I guess.

[AndVeeGeeMakes3]

[LynnS6]

Yeah!!! I hope his spoken language benefits! It's so nice that he has a language foundation to build on with the ASL so that the whole concept of language makes sense to him.

[~cassie]

That's great!

The school should cover the FM system shouldn't they?

I know our school district is buying a MicroLink by phonak to provide to Aidan.

[2boyzmama]

Originally Posted by ~cassie

That's great!

The school should cover the FM system shouldn't they?

I know our school district is buying a MicroLink by phonak to provide to Aidan.

Yes, the school will pay for one to be used at school, but not to be used at home. We want one for home use, too.