Watermelon Hits the Spot!
Siblings Can Play Games, Too.
Nolan Plays in the John Tracy Tree.
Lucas and Nolan Check Out Fish at the Science Center.
The California Science Center is Awesome!Sunday, July 25, 2010
John Tracy Picnic and the California Science Center
Watermelon Hits the Spot!Siblings Can Play Games, Too.Nolan Plays in the John Tracy Tree.Lucas and Nolan Check Out Fish at the Science Center.The California Science Center is Awesome!
Getting Ready for Week Three
We had a really quiet weekend in Oxnard, enjoying some time with family. I'm not "freaking out" about Nolan's bone conduction scores any more, which is a good thing. I am actually feeling much better about the whole thing, since the test at John Tracy actually makes quite a lot of sense (the conductive component explains the fluctuating results in the booth at home). It can be hard to integrate new information when it is so different from what you've been told in the past.
But as one very wise mama said, "Nothing has actually changed. We just know more about it."
This is very, very true. It is also probably the most comforting, sensible thing I could have heard. While we're learning more about Nolan's hearing loss, nothing has actually changed. It has always been this way, and we are just now getting more accurate information about the type and configuration.
The very best news is that he has been amplified correctly, which is the important thing. Plus, he's just doing phenomenally with his speech and language- another indicator that his hearing aids have been set correctly for his loss- whether or not it is conductive or sensorineural (or both, in our case).
As to the "conductive" component, we have no idea why there is one. Nolan had no fluid at birth (he had an ENT appointment the same day as his ABR, and his tymps and otoscopy were clean). My best guess is that the conductive problem lies with the middle ear bones somewhere. His CT scan was completely normal, so it isn't a problem that is apparent with any modern imaging techniques.
While we are going to discuss this finding with our ENT, we probably won't do anything to find the specific cause of the conductive loss. Nolan would still have to wear hearing aids anyway, so unless the benefit is great, we'll avoid any more surgeries. Of course, there is a great part of me that hopes to find the cause of Nolan's entire hearing loss picture- but I'm not willing to put him through more surgery to find out why. His hearing aids work for him, and that's all that really matters.
Tomorrow's session includes lectures on behavior management, expressive language, a film (The Sound and The Fury), and support group. Nolan is really excited to get back to John Tracy, especially after the John Tracy picnic today. He loved running around with the kids! He also got to eat his first In-N-Out Burger and liked watching the magic show. As soon as he got home, he said, "I want go back John Tracy!" He really loves his teachers and friends- it is going to be hard to leave when this week is over!
But as one very wise mama said, "Nothing has actually changed. We just know more about it."
This is very, very true. It is also probably the most comforting, sensible thing I could have heard. While we're learning more about Nolan's hearing loss, nothing has actually changed. It has always been this way, and we are just now getting more accurate information about the type and configuration.
The very best news is that he has been amplified correctly, which is the important thing. Plus, he's just doing phenomenally with his speech and language- another indicator that his hearing aids have been set correctly for his loss- whether or not it is conductive or sensorineural (or both, in our case).
As to the "conductive" component, we have no idea why there is one. Nolan had no fluid at birth (he had an ENT appointment the same day as his ABR, and his tymps and otoscopy were clean). My best guess is that the conductive problem lies with the middle ear bones somewhere. His CT scan was completely normal, so it isn't a problem that is apparent with any modern imaging techniques.
While we are going to discuss this finding with our ENT, we probably won't do anything to find the specific cause of the conductive loss. Nolan would still have to wear hearing aids anyway, so unless the benefit is great, we'll avoid any more surgeries. Of course, there is a great part of me that hopes to find the cause of Nolan's entire hearing loss picture- but I'm not willing to put him through more surgery to find out why. His hearing aids work for him, and that's all that really matters.
Tomorrow's session includes lectures on behavior management, expressive language, a film (The Sound and The Fury), and support group. Nolan is really excited to get back to John Tracy, especially after the John Tracy picnic today. He loved running around with the kids! He also got to eat his first In-N-Out Burger and liked watching the magic show. As soon as he got home, he said, "I want go back John Tracy!" He really loves his teachers and friends- it is going to be hard to leave when this week is over!
Saturday, July 24, 2010
Nolan's Newborn ABR: Questions
Reason # 1,056,078 why I love the John Tracy Clinic: when you have questions, you get explanations.
Obviously, getting news that contradicts years of information is always a tad difficult to accept and digest. So our wonderful JTC audiologist sat down with me to explain why she has concerns about Nolan's diagnosis. Since Nolan was found during the newborn hearing screening procedure, his first test was an ABR. Essentially, Nolan's ABR states (paraphrased):
Pure tone responses were obtained at 60dB for 500 and 1000Hz. A click response was obtained at 35dB for the high frequencies. OAE indicate reduced cochlear function from 500-2000Hz, with present OAE from 3000-8000Hz (indicating normal cochlear function). This is consistent with a mild/moderate sensorineural hearing loss rising to normal in the high frequencies.
This sounds like a nice, consistent picture. Unfortunately, there are a lot of questions regarding this information:
1. No bone conduction testing was performed. There is a way to get objective bone conduction scores, because you can run bone conduction during an ABR test. For children with a moderate loss at birth, a bone conduction should always be run to verify the type of hearing loss.
2. Nolan's best response in the high frequency range was 35dB. This means at some point in the higher frequencies, his best hearing was at 35dB. This is not "normal hearing" in the high frequencies. While ABR's have a correction factor for pure tone responses, there is no correction factor for a click. His hearing, therefore, was never "rising to normal." A high frequency sensorineural component was always present- this is important for other reasons (determining hearing loss progression, for example).
3. While I thought several behavioral bone conduction testing had been performed at BHSC on Nolan, it turns out there has only been one bone conduction audiogram ever performed. When Nolan was two-and-a-half. In other words, Nolan has displayed a hearing loss since birth, but no one bothered to run a bone conduction test for 2.5 years. The only reason bone conduction was finally performed at BHSC was because he had another "drop" in his hearing that was unexplained. This test showed a rising pattern, so that is still an inconsistency. Of course, if you have diagnosed a child with a rising sensorineural loss for three years, you might be more likely to interpret bone conduction scores in a certain manner.
4. The OAE presence/absence on Nolan's ABR report. This was my main sticking point. I figured that Nolan's hearing loss showed no OAE in the low frequencies and present OAE in the high frequencies, so that was consistent with a rising sensorineural loss. I have since been educated on the meaning of OAE, and when they can be present vs. not present. Essentially, the present OAE in the high frequencies do not necessarily indicate normal hearing. Present OAE can be found with mild hearing losses. Also, absent OAE do not necessarily indicate sensorineural hearing loss. While Nolan was missing his low frequency OAE, a conductive hearing loss could also cause a failure to obtain OAE responses. Essentially, the sound can't get through to the cochlea to generate the OAE (and presumably, the OAE responses would have a hard time finding their way back to the probe). If you can't conduct the sound through the middle ear, you aren't going to generate OAE. This means that his OAE responses at the time of his ABR were not sufficient to determine a conductive vs. sensorineural hearing loss- bone conduction was needed.
So what DO we know about Nolan's hearing loss?
1. It is most likely (mostly) conductive in the low and mid frequencies.
2. It is a typical sloping sensorineural hearing loss in the mid-high frequencies.
3. It is probably not a progressive loss.
4. It is a fluctuating loss.
I will talk about congenital, permanent conductive losses in another post (no, it can't be fixed).
Our picture is changing, which is always hard to accept. At least I have been given information to understand our son's initial testing (and what should be standard protocol for a child with a moderate loss at birth). When we return home, our next step will be to find an independent audiologist, hide all of Nolan's hearing test results, and get a third bone conduction test. If the independent test matches John Tracy's results, we will have a definite picture of Nolan's hearing loss configuration/type.
Obviously, getting news that contradicts years of information is always a tad difficult to accept and digest. So our wonderful JTC audiologist sat down with me to explain why she has concerns about Nolan's diagnosis. Since Nolan was found during the newborn hearing screening procedure, his first test was an ABR. Essentially, Nolan's ABR states (paraphrased):
Pure tone responses were obtained at 60dB for 500 and 1000Hz. A click response was obtained at 35dB for the high frequencies. OAE indicate reduced cochlear function from 500-2000Hz, with present OAE from 3000-8000Hz (indicating normal cochlear function). This is consistent with a mild/moderate sensorineural hearing loss rising to normal in the high frequencies.
This sounds like a nice, consistent picture. Unfortunately, there are a lot of questions regarding this information:
1. No bone conduction testing was performed. There is a way to get objective bone conduction scores, because you can run bone conduction during an ABR test. For children with a moderate loss at birth, a bone conduction should always be run to verify the type of hearing loss.
2. Nolan's best response in the high frequency range was 35dB. This means at some point in the higher frequencies, his best hearing was at 35dB. This is not "normal hearing" in the high frequencies. While ABR's have a correction factor for pure tone responses, there is no correction factor for a click. His hearing, therefore, was never "rising to normal." A high frequency sensorineural component was always present- this is important for other reasons (determining hearing loss progression, for example).
3. While I thought several behavioral bone conduction testing had been performed at BHSC on Nolan, it turns out there has only been one bone conduction audiogram ever performed. When Nolan was two-and-a-half. In other words, Nolan has displayed a hearing loss since birth, but no one bothered to run a bone conduction test for 2.5 years. The only reason bone conduction was finally performed at BHSC was because he had another "drop" in his hearing that was unexplained. This test showed a rising pattern, so that is still an inconsistency. Of course, if you have diagnosed a child with a rising sensorineural loss for three years, you might be more likely to interpret bone conduction scores in a certain manner.
4. The OAE presence/absence on Nolan's ABR report. This was my main sticking point. I figured that Nolan's hearing loss showed no OAE in the low frequencies and present OAE in the high frequencies, so that was consistent with a rising sensorineural loss. I have since been educated on the meaning of OAE, and when they can be present vs. not present. Essentially, the present OAE in the high frequencies do not necessarily indicate normal hearing. Present OAE can be found with mild hearing losses. Also, absent OAE do not necessarily indicate sensorineural hearing loss. While Nolan was missing his low frequency OAE, a conductive hearing loss could also cause a failure to obtain OAE responses. Essentially, the sound can't get through to the cochlea to generate the OAE (and presumably, the OAE responses would have a hard time finding their way back to the probe). If you can't conduct the sound through the middle ear, you aren't going to generate OAE. This means that his OAE responses at the time of his ABR were not sufficient to determine a conductive vs. sensorineural hearing loss- bone conduction was needed.
So what DO we know about Nolan's hearing loss?
1. It is most likely (mostly) conductive in the low and mid frequencies.
2. It is a typical sloping sensorineural hearing loss in the mid-high frequencies.
3. It is probably not a progressive loss.
4. It is a fluctuating loss.
I will talk about congenital, permanent conductive losses in another post (no, it can't be fixed).
Our picture is changing, which is always hard to accept. At least I have been given information to understand our son's initial testing (and what should be standard protocol for a child with a moderate loss at birth). When we return home, our next step will be to find an independent audiologist, hide all of Nolan's hearing test results, and get a third bone conduction test. If the independent test matches John Tracy's results, we will have a definite picture of Nolan's hearing loss configuration/type.
Thursday, July 22, 2010
Cutting and Pasting
We had several interesting lectures today, including lectures on the development of speech sounds, literacy and the deaf child, and how to create experience books. In support group, we wrote letters to our hearing children, telling them how much we love them- the letters will be read to the siblings in the sibling program on the last day of the clinic. After this session, we all went to the larger conference room and created two experience books.
The first was made by stacking four sheets of paper and then folding it over, so there was a "lift the tab" type book. The pages are stacked vertically (the blue and orange book in the picture), and you place all the text on the exposed tabs. The pictures are placed under the tab, so you lift it to reveal the picture after you've read the text. This reinforces the "listening before looking" method, and also demonstrates that text has meaning, since only the text is visible on the outside of the book. This type of book is very useful for discussing sequenced activities (you could talk about the steps in getting dressed, for example). One parent has made one of these with different items that need to be accomplished in the day, and the book has a reward chart on the back. When all the items are checked off, the child earns a reward (such as a sticker). Nolan's is blank, because we didn't really have time to finish the books. When we get home, I think I will make a book about proper conduct in the car (we don't scream or throw sippy cups at Mommy's head, for example).
The smaller book was made from paper lunch bags. Three were stacked, with the middle sack facing the opposite direction as the top and bottom sacks. The book was folded in half and secured, and this creates a book with a page/pouch style. You can place items in the pouch that relate to the text on the page. This one is very clever, and I can't wait to finish this one. I might do ours with a hiking theme. On the page, we will talk about walking through the woods. In the pouch, I will place things like leaves, pictures of rocks, birds, etc. that we would see in the woods. On the next page, I could place a creek and put items like frogs, fish, tadpoles, and swimming trunks in the pouch. I'll post images when we finish our books (probably not until we get home, unfortunately)!
John Tracy also had a book fair today (always bad for my wallet, since I love books). They also had adorable hats on sale for $1 each, with the John Tracy logo. For $1, I couldn't pass them up- I bought four of them.
Unfortunately, our SLT had to cancel our appointment today due to an emergency (I hope everything is OK)! We didn't get to talk about Nolan's audiogram, but we'll take that as it comes. I'm not sure whether or not I believe the new audiogram. We've had a few bone conduction tests at BHSC that show a rising sensorineural loss based on bone conduction, and his ABR at birth showed a rising loss with absent OAE in the low frequencies and present OAE in the high frequencies (consistent with a rising sensorineural hearing loss). I've drawn a very crude example of the difference between the JTC results and our audiology clinic's results:
As you can see, these are pretty conflicting results. I suppose, in the end, it doesn't really matter if he has these odd bone conduction scores if his air conduction is about the same and his aided testing is fine. He does have an air-bone gap, but I'm not keen on putting Nolan through exploratory surgery since he'd have to wear hearing aids no matter what (even if they could find and fix a conductive problem with his ossicles, he still has the sensorineural loss). And if his air conduction hearing aids work well for him, I couldn't see putting him through the implant surgery for a BAHA (bone anchored hearing aid). Plus, I don't even know if BAHA could handle the high frequency sensorineural loss that JTC is showing. There are a lot of unknowns, and it is difficult to integrate such different information into what we know about Nolan's loss.
All we do know is:
1. If JTC's results are correct, then Nolan has been misdiagnosed for three years. Since his CT scan is normal, he has type A tymps when his tubes are out, and he currently has no fluid and he does have patent PE tubes, there is no discernable cause for the "conductive" loss. He also lacks all OAE, and has since birth in this region. The only way to see if his ossicles are affected (since the CT scan was completely normal) is to do exploratory surgery, which has risks of its own. Especially since Nolan has central apnea.
2. If JTC's results are not correct, then we have to wonder why we are getting such variable responses from Nolan. At BHSC, it seems like he has lost some sensorineural hearing, or has a mixed loss. He has also had more than one bone conduction test at BHSC (by more than one audiologist), and these results have been consistent with a rising slope.
His results at BHSC are more consistent with his ABR/OAE testing at birth than the JTC results, but his testing seemed pretty reliable (his attention was well focused) at JTC. On the other hand, he was really well focused at BHSC when we got the rising slope bone conduction scores.
We have two completely different results, with very different interpretations... and no way to tell which is the "correct" answer. Push come to shove, we'll just leave his hearing aids where they are and ignore the conductive component, because he is developing speech and language with no problem with his current hearing aids. There's no way I'd put the little guy through more surgery for no real gain. On the other hand, if we could find the cause of the conductive component (if truly there), it might explain the cause of Nolan's hearing loss (if he had a congenitally fixed stapes or something of that nature that wouldn't show up on a CT scan). And if a BAHA would be significantly better than an air conduction hearing aid for him, it would be worth exploring.
When you have a kid whose hearing loss profile changes every time you step into the booth, you go through the grief process over and over again- including the denial/anxiety portion. If only these tests weren't so subjective!
The first was made by stacking four sheets of paper and then folding it over, so there was a "lift the tab" type book. The pages are stacked vertically (the blue and orange book in the picture), and you place all the text on the exposed tabs. The pictures are placed under the tab, so you lift it to reveal the picture after you've read the text. This reinforces the "listening before looking" method, and also demonstrates that text has meaning, since only the text is visible on the outside of the book. This type of book is very useful for discussing sequenced activities (you could talk about the steps in getting dressed, for example). One parent has made one of these with different items that need to be accomplished in the day, and the book has a reward chart on the back. When all the items are checked off, the child earns a reward (such as a sticker). Nolan's is blank, because we didn't really have time to finish the books. When we get home, I think I will make a book about proper conduct in the car (we don't scream or throw sippy cups at Mommy's head, for example).The smaller book was made from paper lunch bags. Three were stacked, with the middle sack facing the opposite direction as the top and bottom sacks. The book was folded in half and secured, and this creates a book with a page/pouch style. You can place items in the pouch that relate to the text on the page. This one is very clever, and I can't wait to finish this one. I might do ours with a hiking theme. On the page, we will talk about walking through the woods. In the pouch, I will place things like leaves, pictures of rocks, birds, etc. that we would see in the woods. On the next page, I could place a creek and put items like frogs, fish, tadpoles, and swimming trunks in the pouch. I'll post images when we finish our books (probably not until we get home, unfortunately)!
John Tracy also had a book fair today (always bad for my wallet, since I love books). They also had adorable hats on sale for $1 each, with the John Tracy logo. For $1, I couldn't pass them up- I bought four of them.
Unfortunately, our SLT had to cancel our appointment today due to an emergency (I hope everything is OK)! We didn't get to talk about Nolan's audiogram, but we'll take that as it comes. I'm not sure whether or not I believe the new audiogram. We've had a few bone conduction tests at BHSC that show a rising sensorineural loss based on bone conduction, and his ABR at birth showed a rising loss with absent OAE in the low frequencies and present OAE in the high frequencies (consistent with a rising sensorineural hearing loss). I've drawn a very crude example of the difference between the JTC results and our audiology clinic's results:
As you can see, these are pretty conflicting results. I suppose, in the end, it doesn't really matter if he has these odd bone conduction scores if his air conduction is about the same and his aided testing is fine. He does have an air-bone gap, but I'm not keen on putting Nolan through exploratory surgery since he'd have to wear hearing aids no matter what (even if they could find and fix a conductive problem with his ossicles, he still has the sensorineural loss). And if his air conduction hearing aids work well for him, I couldn't see putting him through the implant surgery for a BAHA (bone anchored hearing aid). Plus, I don't even know if BAHA could handle the high frequency sensorineural loss that JTC is showing. There are a lot of unknowns, and it is difficult to integrate such different information into what we know about Nolan's loss.All we do know is:
1. If JTC's results are correct, then Nolan has been misdiagnosed for three years. Since his CT scan is normal, he has type A tymps when his tubes are out, and he currently has no fluid and he does have patent PE tubes, there is no discernable cause for the "conductive" loss. He also lacks all OAE, and has since birth in this region. The only way to see if his ossicles are affected (since the CT scan was completely normal) is to do exploratory surgery, which has risks of its own. Especially since Nolan has central apnea.
2. If JTC's results are not correct, then we have to wonder why we are getting such variable responses from Nolan. At BHSC, it seems like he has lost some sensorineural hearing, or has a mixed loss. He has also had more than one bone conduction test at BHSC (by more than one audiologist), and these results have been consistent with a rising slope.
His results at BHSC are more consistent with his ABR/OAE testing at birth than the JTC results, but his testing seemed pretty reliable (his attention was well focused) at JTC. On the other hand, he was really well focused at BHSC when we got the rising slope bone conduction scores.
We have two completely different results, with very different interpretations... and no way to tell which is the "correct" answer. Push come to shove, we'll just leave his hearing aids where they are and ignore the conductive component, because he is developing speech and language with no problem with his current hearing aids. There's no way I'd put the little guy through more surgery for no real gain. On the other hand, if we could find the cause of the conductive component (if truly there), it might explain the cause of Nolan's hearing loss (if he had a congenitally fixed stapes or something of that nature that wouldn't show up on a CT scan). And if a BAHA would be significantly better than an air conduction hearing aid for him, it would be worth exploring.
When you have a kid whose hearing loss profile changes every time you step into the booth, you go through the grief process over and over again- including the denial/anxiety portion. If only these tests weren't so subjective!
Of Baseball and Car Fires
Nolan's earmolds are Dodger BlueIt's never a good sign to have your car start spewing out smoke as you're waiting in a thick line of traffic, attempting to enter the stadium. On the other hand, it allows for great language lessons: Car Fire, Overheating, Clutch, Nasty-Burning-Smell, and OMG-Are-We-Ever-Going-To-Park were discussed heavily.
Fortunately, we were able to find a parking spot soon after getting through the parking booths. Unfortunately, the car was still smoking and we were quite far from our "pavillion" (though we didn't know this at the time). Dennis popped the hood and we all agreed that we saw smoke. I'm pretty sure there were car parts in there, too- I know as much about cars as I do about the inner workings of the space shuttle. All I know was that smoke was coming off the stuff under the hood, and that is generally not good.
We decided to let the car sit there and cool down a little, so we headed up to the stands. The other two families were already there, and we ate some free Dodger Dogs, popcorn, and peanuts while watching the game. We stayed just until after the "Take Me Out to the Ballgame" song. Matt was extremely tired and we were a wee bit concerned about the car spontaneously igniting on the way home. Luckily, it seemed to drive well (despite the horrid burning smell) and we arrived safely home.
Today, we have our support team meetings, then a lecture on experience books and a Scholastic Book Fair. My bookcases at home may never forgive me- I have a ridiculous love for books, so I am sure a few will come home with us. We have a lecture on speech assessments, then a lecture on literacy and the hard of hearing or deaf child. I also have an appointment with Miss C., Nolan's SLT. She has completed his language and articulation tests, so I am interested to see his scores (I understand he did very well, so that is always exciting news)!
I do have to say, I love John Tracy. While we got completely different information about Nolan's hearing loss yesterday, we are not left high and dry. We are going to discuss the discrepancies with Nolan's SLT, we have other parents to talk to, and his audiologist is going to try to get him in for more booth testing so we can get a better handle on the situation. We'd also like to get an aided audiogram, but like at home, his changing hearing loss characteristics usually means that we spend too much time in the booth trying to get his unaided levels to ever get around to aided levels. We're trying for a third audiology session (he has a second session on the 28th of July). If we can get consistent information here, we'll have to take it to our audiologist and ENT at home, to discuss the situation. Adapting to such radically different information about your child's "condition" can be difficult. If true, it is exciting if it can be "fixed," though Nolan's sensorineural component can never be fixed. I'm not so thrilled about the possibility of going from air-conduction aids to a BAHA system (an implanted system for permanent conductive losses). We'll have to see what the repeated testing shows, and we have learn about all of the options, pros, and cons before making any decisions.
I'm off to brew some coffee before Nolan wakes up- it is going to be a busy day today!
Dennis left for Oxnard at 5:30am today, taking a very tired Matt and Smokey the Car with him. I'm not sure when he'll be back- probably on Friday afternoon to pick Nolan and me up.
Wednesday, July 21, 2010
Audiological Angst
With a child who is hard-of-hearing, understanding what he can hear unaided vs. aided is often quite confusing. There are many times that Nolan shows a response to something (with his aids off) and we wonder if this whole thing has been a great big mistake. That he has normal hearing after all, and the tests have been one big giant error. Other times, he acts totally deaf, not turning to people calling his name or to other sounds that he "should" hear. Then we worry that he has lost more hearing, and this can cause a great deal of stress.
The one thing that gives us reassurance is consistent booth test results. After all, if the booth tests are consistent, then we can be fairly sure of the testing methodology. While we've had some fluctuation in the high frequencies with Nolan's hearing, his low frequencies have been fairly stable. His bone conduction scores have also always been stable, with his scores going from 50dB in the lows to 30dB in the highs. This is consistent with his ABR at birth, and with his OAE results at birth (absent OAE in the lows, but present in the highs).
That was true until today. Nolan's audiological testing threw me for a complete loop today. His bone conduction scores were the exact opposite of what they've been in the past. Nolan tested at 5dB at 250Hz, 25dB at 500Hz, and 25dB at 1000Hz.
Big difference from 50dB, yah?
And so now, it looks like this all might have been one giant, colossal mistake. Could Nolan's loss have been conductive since birth? He had no fluid or ear infections at birth, and his CT scan shows a normal ossicular chain. So really, it doesn't make any sense (especially in conjunction with the missing DPOAE in the lows, which were present in the highs). Sure, he's had some fluid and infections since he turned about 1 year old, but his first tests were prior to all the infection hullabaloo.
The amount of anxiety this produces is insane. For instance, the type of device that Nolan is using might be inappropriate if his loss is primarily conductive. A BAHA would be a more appropriate hearing aid for him (if this is true). Or, possibly, the conductive component could be corrected if the source could be found. With a 60dB conductive loss (his air conduction thresholds are fairly similar to his test in May), something is drastically wrong with his middle ear system. This kind of loss isn't caused by tubes- especially since he's had it since birth. The CT scan showed a completely normal middle ear, so there isn't anything really wrong with the bones there.
Which is why I have a hard time believing the latest test results. With a normal middle ear (no fluid, normal ossicular chain, PE tubes), a child shouldn't have a 40-60dB conductive loss. Nolan also doesn't have a craniofacial syndrome, which rules out other strange anatomical things going on. Then there are the bone conduction tests obtained at home, which are all consistent and show a 50dB rising to 30dB loss (which is consistent with his air conduction booth test in May 2008).
Anyhow, Nolan is not hearing at a normal level. His air conduction thresholds are still moderately severe across the board for the left ear, and are at a moderate level for the right ear. Bone conduction does show a sensorineural loss for the 2-4KHz range, so he doesn't have an air-bone gap at the higher frequencies. For the first time in his life, he shows a sloping sensorineural loss.
Our audiology clinic at home shows a moderately severe to moderate loss, with a possible slight conductive component across several frequencies. John Tracy is showing a moderately severe conductive loss in the low frequencies, with a moderate sensorineural loss in the high frequencies. Now the question is: which one is right? Has Nolan been misdiagnosed all along? Or are we getting "false" bone conduction readings?
We may ask for a referral to House Ear Institute to sort this all out. If only there were an objective way to get bone conduction scores!
The one thing that gives us reassurance is consistent booth test results. After all, if the booth tests are consistent, then we can be fairly sure of the testing methodology. While we've had some fluctuation in the high frequencies with Nolan's hearing, his low frequencies have been fairly stable. His bone conduction scores have also always been stable, with his scores going from 50dB in the lows to 30dB in the highs. This is consistent with his ABR at birth, and with his OAE results at birth (absent OAE in the lows, but present in the highs).
That was true until today. Nolan's audiological testing threw me for a complete loop today. His bone conduction scores were the exact opposite of what they've been in the past. Nolan tested at 5dB at 250Hz, 25dB at 500Hz, and 25dB at 1000Hz.
Big difference from 50dB, yah?
And so now, it looks like this all might have been one giant, colossal mistake. Could Nolan's loss have been conductive since birth? He had no fluid or ear infections at birth, and his CT scan shows a normal ossicular chain. So really, it doesn't make any sense (especially in conjunction with the missing DPOAE in the lows, which were present in the highs). Sure, he's had some fluid and infections since he turned about 1 year old, but his first tests were prior to all the infection hullabaloo.
The amount of anxiety this produces is insane. For instance, the type of device that Nolan is using might be inappropriate if his loss is primarily conductive. A BAHA would be a more appropriate hearing aid for him (if this is true). Or, possibly, the conductive component could be corrected if the source could be found. With a 60dB conductive loss (his air conduction thresholds are fairly similar to his test in May), something is drastically wrong with his middle ear system. This kind of loss isn't caused by tubes- especially since he's had it since birth. The CT scan showed a completely normal middle ear, so there isn't anything really wrong with the bones there.
Which is why I have a hard time believing the latest test results. With a normal middle ear (no fluid, normal ossicular chain, PE tubes), a child shouldn't have a 40-60dB conductive loss. Nolan also doesn't have a craniofacial syndrome, which rules out other strange anatomical things going on. Then there are the bone conduction tests obtained at home, which are all consistent and show a 50dB rising to 30dB loss (which is consistent with his air conduction booth test in May 2008).
Anyhow, Nolan is not hearing at a normal level. His air conduction thresholds are still moderately severe across the board for the left ear, and are at a moderate level for the right ear. Bone conduction does show a sensorineural loss for the 2-4KHz range, so he doesn't have an air-bone gap at the higher frequencies. For the first time in his life, he shows a sloping sensorineural loss.
Our audiology clinic at home shows a moderately severe to moderate loss, with a possible slight conductive component across several frequencies. John Tracy is showing a moderately severe conductive loss in the low frequencies, with a moderate sensorineural loss in the high frequencies. Now the question is: which one is right? Has Nolan been misdiagnosed all along? Or are we getting "false" bone conduction readings?
We may ask for a referral to House Ear Institute to sort this all out. If only there were an objective way to get bone conduction scores!
Tuesday, July 20, 2010
Party Time
Pizza party in the lounge this eveningToday's lectures at John Tracy were very interesting- including staff from the House Ear Institute for a Q&A session on cochlear implants and a lecture on auditory learning. While Nolan is nowhere near implant candidacy criteria, it was interesting to learn about the implants and to see actual displays of the three models available.
The auditory learning lecture included information on acoustic highlighting and how children use listening as the main input for developing speech: we speak what we hear. Many of the acoustic highlighting techniques are completely new to me. I never thought to whisper to a deaf child, and as it turns out, this technique enhances the audibility of higher frequency consonants. This was termed the "Buenos Dias" effect, because if you shout, "bUEnOs dIAs!" you can hear the vowels very loudly, but the consonants are masked. If you whisper, "BuenoS DiaS," you can hear the softer, high frequency consonants better.
After school, most of the John Tracy group headed out en masse to the playground on Flower St. This time, sunscreen and swimming suits were taken along for the ride- the kids had a blast playing in the fountain. I wonder what the locals think, with a huge caravan of strollers and parents wandering through a construction zone in Los Angeles. We'll do anything for a language opportunity (and a way to get the wiggles out)! After playing, everyone gathered in the lounge on the 3rd floor for pizza and pasta. We had a great time, though the noise made Nolan crazy. He huddled with Dennis and wouldn't play with any of the kids.
Nolan's "safety zone."
A typical "overstimulated" reaction-laying down away from the noise!I will not blog tomorrow, because we are headed out to a Dodger's game tomorrow night. Someone (very generously) donated Dodger's tickets to the John Tracy Clinic, and our family won a raffle. We get to sit in an all-you-can-eat pavillion, which is possibly the most awesome invention in baseball. Dodger Dogs, here we come!
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