They were wrong...my son is hearing.

Oceanbreeze said:
Oh, great... Lets just sue everyone!!

There was no harm done to this child, so why bring a lawsuit? It was aggravating to the parents of this child, but no real harm was done. I don't know what harm, if any, was done by wearing HAs for the last several months. But, really, is suing the medical profession the right thing to do when it was reasonable to believe the child had fluid in his ears? That does happen; especially if this baby was born by c section.

I'm NOT suggesting that this family didn't go through hell while this process played out, and I am glad they were tenacious and stuck to their guns when they thought they were right. I feel bad that they had to go through what they did, but to suggest a lawsuit is overreacting just a tad.
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But the audiologist truly does have a share of their money. If the medical profession believed the child had fluid as you say, they should have put tubes, not sold hearing aids.
 
Bottesini said:
But the audiologist truly does have a share of their money. If the medical profession believed the child had fluid as you say, they should have put tubes, not sold hearing aids.
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Please go back to the OP. It says right there that the child had fluid in the ears. I'm NOT saying this wasn't a misdiagnosis. It clearly was, but to start suing people because of it, seems to be a bit rash; especially when no real harm was done to the child.

I'm not sue happy, I guess.... :dunno:
 
Oceanbreeze said:
Oh, great... Lets just sue everyone!!

There was no harm done to this child, so why bring a lawsuit? It was aggravating to the parents of this child, but no real harm was done. I don't know what harm, if any, was done by wearing HAs for the last several months. But, really, is suing the medical profession the right thing to do when it was reasonable to believe the child had fluid in his ears? That does happen; especially if this baby was born by c section.

I'm NOT suggesting that this family didn't go through hell while this process played out, and I am glad they were tenacious and stuck to their guns when they thought they were right. I feel bad that they had to go through what they did, but to suggest a lawsuit is overreacting just a tad.
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I appreciate your thoughts on this. I really do. But I have to respectfully disagree. Even if, hypothetically, no harm was done to my son's ears, there has been irreversible harm done to me in this whole process. My short-lived high of being happy that they were wrong is now slowly being replaced with denial and thinking that surely this cannot be correct either since they have told me for 8 months that my son had a permanent loss. I keep thinking that SURELY this is all some sort of dream or mistake, even though this is the exact thing I have been trying to prove for the last 8 months.

I have spent the last 8 months of his life obsessing over this, and I just wonder how old he would be before it was truly found out that it was indeed just fluid had I not been so persistent about everything.

These people treated me like I was absolutely crazy. Each time I saw his audiologist and would say something like "if he doesn't really have a hearing loss," she would look at me like I was crazy and tell me the same things over and over. "Mrs. Bedell...we did bone conduction on Grayson and it indicated a sensorineural loss for at least one ear." "Mrs. Bedell...his hearing has obviously progressed a little and that is why it is so different from the first ABR." Over...and over...and over.

I TOLD these people that my son could hear...I told these people that he responded to everything they said he could not...whispering, dogs barking, etc. I even recorded him responding to these things and brought my camera to her to show her, at which point she said, "Well, how far away from him were you when you whispered his name?" with a sort of attitude like I'm just a crazy person in denial.

I switched to my current audiologist because of a comment she made to me at my last appt with her in January. We, again, were on the subject of whether or not he really had a hearing loss because I just COULD NOT let it rest and get over it. She told me that if he were able to pass an OAE, then she may stop and say "hmm" and think something was up. I told her, "Um...he did pass one on his right ear the day before you did his ABR." She said she didn't remember that and fumbled through her papers. But she didn't remember because SHE didn't perform it. BUT...I had told her that from DAY ONE and mentioned it at EVERY...SINGLE...appointment. Because she had said that there was no way he could pass an OAE with his level of loss in his right ear. Had she paid attention to me and not just shrugged me off as a stupid parent in denial, she would have heard me at least once of the 20 times I must have said it to her. And the ENT who called upon her to do the test should have gone over that with her as well. I think they are both at fault.

There is so much more, but it has been more than just hell. It has been a complete nightmare. They ripped away my son's babyhood from me, because all I have been able to focus on is disproving them. If his tests had matched up or been consistent, I would have been at peace all this time knowing he had hearing loss and would have been okay. However, his tests have been extremely inconsistent, so I knew something was wrong, and it didn't match up with neuropathy.

I have spent hundreds and hundreds of hours over the past 8 months researching different medical journals and articles and studies gathering information to argue with them about, and every time I would be shrugged off like I knew nothing.

It was not until I got this 3rd audiologist that someone started to listen to me. She has really been amazingly receptive at my ideas and theories the past few weeks. She has only been our audiologist for 3 weeks and was able to figure this out, so why not them??

This has drained me physically and mentally. After almost 9 months of talking to him without moving my lips to see if he would smile or respond, visits to our home from a parental adviser taking up OUR time talking about speech therapy, milestones, hearing aids, schools for the deaf, visits to specialists, almost losing my at-home job because I could barely work with all of the researching and extra time I have been having to take with Grayson, SEVERE strain on my marriage because I have been glued to my computer, neglecting my other children because I've had to put Grayson at the forefront...that is not worth anything? 9 months of keeping up with hearing aids, having to "disassemble" them every night, clean them, buy batteries, have near heart attacks whenever I saw him chewing on them (lol), etc. That's not worth anything?

If there was even a chance that he had fluid, it should have been suggested. It could have been cleared up many months ago. The ENT told me the other day that his tympanograms have been up and down over the past few months. WHY was that not brought to my attention, and why did a lightbulb not go off in their head?

Not only did my son have very strange, inconsistent testing, but he also had reverse-slope hearing loss, which should have thrown up another flag with the inconsistencies. And my son sees the best practice in Atlanta!

The ENT told me that tympanometry in small infants is not reliable, so WHY don't they just suggest tubes if there is even a possiblity of there being fluid? With inconsistent tests such as his?

If I sued, it wouldn't be for greed of money. It would be for the past 9 months of my life being completely turned upside down. I knew in my heart that my little boy did not have hearing loss, which is why I spent so much time and effort trying to disprove it. But I couldn't NOT put the HAs on, just in case he really did have a loss.

No one should have to go through this, and they need to learn to be more careful next time when there is inconsistent testing and not just chalk it up to the loss progressing, when there were other weird things going on like passing OAEs when neuropathy didn't fit as a diagnosis.

I was so depressed at one point thinking that I was crazy that I seriously contemplated suicide. Ultimately, I knew Grayson needed me. Glad I was able to overcome those feelings.
 
3littlemen said:
I appreciate your thoughts on this. I really do. But I have to respectfully disagree. Even if, hypothetically, no harm was done to my son's ears, there has been irreversible harm done to me in this whole process. My short-lived high of being happy that they were wrong is now slowly being replaced with denial and thinking that surely this cannot be correct either since they have told me for 8 months that my son had a permanent loss. I keep thinking that SURELY this is all some sort of dream or mistake, even though this is the exact thing I have been trying to prove for the last 8 months.

I have spent the last 8 months of his life obsessing over this, and I just wonder how old he would be before it was truly found out that it was indeed just fluid had I not been so persistent about everything.

These people treated me like I was absolutely crazy. Each time I saw his audiologist and would say something like "if he doesn't really have a hearing loss," she would look at me like I was crazy and tell me the same things over and over. "Mrs. Bedell...we did bone conduction on Grayson and it indicated a sensorineural loss for at least one ear." "Mrs. Bedell...his hearing has obviously progressed a little and that is why it is so different from the first ABR." Over...and over...and over.

I TOLD these people that my son could hear...I told these people that he responded to everything they said he could not...whispering, dogs barking, etc. I even recorded him responding to these things and brought my camera to her to show her, at which point she said, "Well, how far away from him were you when you whispered his name?" with a sort of attitude like I'm just a crazy person in denial.

I switched to my current audiologist because of a comment she made to me at my last appt with her in January. We, again, were on the subject of whether or not he really had a hearing loss because I just COULD NOT let it rest and get over it. She told me that if he were able to pass an OAE, then she may stop and say "hmm" and think something was up. I told her, "Um...he did pass one on his right ear the day before you did his ABR." She said she didn't remember that and fumbled through her papers. But she didn't remember because SHE didn't perform it. BUT...I had told her that from DAY ONE and mentioned it at EVERY...SINGLE...appointment. Because she had said that there was no way he could pass an OAE with his level of loss in his right ear. Had she paid attention to me and not just shrugged me off as a stupid parent in denial, she would have heard me at least once of the 20 times I must have said it to her. And the ENT who called upon her to do the test should have gone over that with her as well. I think they are both at fault.

There is so much more, but it has been more than just hell. It has been a complete nightmare. They ripped away my son's babyhood from me, because all I have been able to focus on is disproving them. If his tests had matched up or been consistent, I would have been at peace all this time knowing he had hearing loss and would have been okay. However, his tests have been extremely inconsistent, so I knew something was wrong, and it didn't match up with neuropathy.

I have spent hundreds and hundreds of hours over the past 8 months researching different medical journals and articles and studies gathering information to argue with them about, and every time I would be shrugged off like I knew nothing.

It was not until I got this 3rd audiologist that someone started to listen to me. She has really been amazingly receptive at my ideas and theories the past few weeks. She has only been our audiologist for 3 weeks and was able to figure this out, so why not them??

This has drained me physically and mentally. After almost 9 months of talking to him without moving my lips to see if he would smile or respond, visits to our home from a parental adviser taking up OUR time talking about speech therapy, milestones, hearing aids, schools for the deaf, visits to specialists, almost losing my at-home job because I could barely work with all of the researching and extra time I have been having to take with Grayson, SEVERE strain on my marriage because I have been glued to my computer, neglecting my other children because I've had to put Grayson at the forefront...that is not worth anything? 9 months of keeping up with hearing aids, having to "disassemble" them every night, clean them, buy batteries, have near heart attacks whenever I saw him chewing on them (lol), etc. That's not worth anything?

If there was even a chance that he had fluid, it should have been suggested. It could have been cleared up many months ago. The ENT told me the other day that his tympanograms have been up and down over the past few months. WHY was that not brought to my attention, and why did a lightbulb not go off in their head?

Not only did my son have very strange, inconsistent testing, but he also had reverse-slope hearing loss, which should have thrown up another flag with the inconsistencies. And my son sees the best practice in Atlanta!

The ENT told me that tympanometry in small infants is not reliable, so WHY don't they just suggest tubes if there is even a possiblity of there being fluid? With inconsistent tests such as his?

If I sued, it wouldn't be for greed of money. It would be for the past 9 months of my life being completely turned upside down. I knew in my heart that my little boy did not have hearing loss, which is why I spent so much time and effort trying to disprove it. But I couldn't NOT put the HAs on, just in case he really did have a loss.

No one should have to go through this, and they need to learn to be more careful next time when there is inconsistent testing and not just chalk it up to the loss progressing, when there were other weird things going on like passing OAEs when neuropathy didn't fit as a diagnosis.

I was so depressed at one point thinking that I was crazy that I seriously contemplated suicide. Ultimately, I knew Grayson needed me. Glad I was able to overcome those feelings.
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...And, I appreciate your coming back and relaying this. The thing is, it's YOUR call to make; not ours. If you feel that someone was negligent, by all means, do what is necessary to get compensation for your worry. God knows you deserve it. I just was trying to caution others from being too reactive since we may not know ALL the facts.

I wish you the best and I'm grateful that you were able to finally get a correct diagnosis for your little boy.

Best wishes.
 
Oceanbreeze said:
...And, I appreciate your coming back and relaying this. The thing is, it's YOUR call to make; not ours. If you feel that someone was negligent, by all means, do what is necessary to get compensation for your worry. God knows you deserve it. I just was trying to caution others from being too reactive since we may not know ALL the facts.

I wish you the best and I'm grateful that you were able to finally get a correct diagnosis for your little boy.

Best wishes.
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Thanks so much! I hope you understand I was not being "snippy" with you, but just relieving some frustration in general :)
 
I read your stories. Wow, I am sorry about what happen to you and your husband trying to fight over 2 audiologists who don't understand about proving the hearing test device for babies. They believe that with that special test, that your son (Was he sleeping while he was in the test) was not responding to the test. It is a shame to have to put CI on very young babies which I despite the thought of babies having to go through with surgery. I am glad that you have fought hard to prove to them that your son is hearing, not profound deaf.

Many hearing parents of deaf children should learn to cope with having to learn to sign and not put CI. I don't really understand why it is important for us, Deafies and HOH, to hear sounds as we are use to silence or able to hear environment sounds with hearing aids. Having a device in the cochlear is not the way to go anyway. So I would rather see a young child of 12 or 13 years old and up to decide if he or she want to have CI. That would be fine with that, but not babies, please. :roll:
 
Bebonang said:
I read your stories. Wow, I am sorry about what happen to you and your husband trying to fight over 2 audiologists who don't understand about proving the hearing test device for babies. They believe that with that special test, that your son (Was he sleeping while he was in the test) was not responding to the test. It is a shame to have to put CI on very young babies which I despite the thought of babies having to go through with surgery. I am glad that you have fought hard to prove to them that your son is hearing, not profound deaf.

Many hearing parents of deaf children should learn to cope with having to learn to sign and not put CI. I don't really understand why it is important for us, Deafies and HOH, to hear sounds as we are use to silence or able to hear environment sounds with hearing aids. Having a device in the cochlear is not the way to go anyway. So I would rather see a young child of 12 or 13 years old and up to decide if he or she want to have CI. That would be fine with that, but not babies, please. :roll:
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Thank you! :) They didn't say he had profound loss, though. At first they said he had mild-to-moderate, but then they said moderate-to-moderately severe the second ABR...I am just wondering if I had let the same audi do a 3rd ABR what it would have said, because she said there was no fluid, so there still would have been fluid. Had she performed a 3rd ABR (which she was wanting to do because of me whining) without doing the myringotomy, who knows what it would have said...it could have said severe or profound...who knows...scary thought. :(
 
How is your sweet little guy progressing communication-wise? Are you finding any pick-up on the ASL you were beginning (I think you said he wasn't being as receptive as you'd hoped -- sometimes it just takes a little while)?

If he is experiencing temporary or fluctuating hearing loss due to the fluid your first doc detected way back after the newborn screening and now this latest one has found the the fluid is either back or remains, perhaps developing a means of communicating via sign will help, especially if this will be an ongoing situation.
 
Fortunately, they dont implant if there's a chance of fluid even if not detected in early tests. Even though there was no detectable fluid in my daughter's ears, they did a tympanostomy on each ear before scheduling surgery. No fluid found, but they wanted to be absolutely certain there was no conductive cause before proceeding. They may say you are eligible pretty early in the process, but there are a large # of tests that CI candidates go through in the months before surgery actually happens, long after the aid is give initial findings.
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True dat, but I think people were bringing up CI in general. I know that faire joure has stated that audis can tell how well a baby can hear with hearing aids, and can thus implant kids who get some benifit from HA. All I can say is that it is VERY hard to tell how well a baby or even a toddler can hear. ABRs can be and are inaccurate......and behavorial testing (meaning traditional soundbooth testing) isn't reliable until toddlerhood.
and mylittlemen, I can totally and completely understand!
 
deafdyke said:
True dat, but I think people were bringing up CI in general. I know that faire joure has stated that audis can tell how well a baby can hear with hearing aids, and can thus implant kids who get some benifit from HA. All I can say is that it is VERY hard to tell how well a baby or even a toddler can hear. ABRs can be and are inaccurate......and behavorial testing (meaning traditional soundbooth testing) isn't reliable until toddlerhood.
and mylittlemen, I can totally and completely understand!
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The CI is moot in this discussion, though, DD.

One, the child was never "diagnosed" in the profound range, so the discussion was never brought up to the parents (thankfully, I might add!).

Two, the ONLY WAY that would even come close to be tossed into the discussion in the real sense is IF the child had a progressive loss. Since the child didn't, the whole CI point was moot (and a red herrin, I might add) Bring up the CI on this forum in any discussion and you're going to get people with stroooooong opinions.

For the sake of this parent, I would hope cooler heads prevail and we not get reactive. We can all be thankful that this parent WAS proactive and followed their instinct, and things will turn out well for this child. :)
 
SneakerNet said:
This is from today article on CNN

Don't let a doctor destroy your baby's hearing - CNN.com
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UGH! My daughter disliked her HAs, and often tossed them when she wasn't eating her sparkly earmolds. I once placed one up to my ear while testing it, without the filter hearing parents are supposed to use for doing that, and got a sense of what was blasting into my child's ear: I couldn't hear from that side for a couple of months, fluid seeped out of my ear, and it hurt like the devil inside for almost 2 weeks straight.

As the article says, parents have GOT to do their due diligence and find specialists who know their stuff. One of the greatest benefits of taking part on the CICircle and other forums specific to families with deaf children is that you are quickly exposed to this sort of possibility and the pitfalls and information gaps along the way.
 
GrendelQ said:
UGH! My daughter disliked her HAs, and often tossed them when she wasn't eating her sparkly earmolds. I once placed one up to my ear while testing it, without the filter hearing parents are supposed to use for doing that, and got a sense of what was blasting into my child's ear: I couldn't hear from that side for a couple of months, fluid seeped out of my ear, and it hurt like the devil inside for almost 2 weeks straight.

As the article says, parents have GOT to do their due diligence and find specialists who know their stuff. One of the greatest benefits of taking part on the CICircle and other forums specific to families with deaf children is that you are quickly exposed to this sort of possibility and the pitfalls and information gaps along the way.
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Well, we did some followup booth testing the other day, and they said he could definitely keep the HAs off. His right ear tested normally everywhere, but it did sort of drop off in the higher frequencies, which is unlike his former ABRs as they both showed low frequency loss. The left ear was pretty much normal...normal at 1,000, 2,000, and 3,000, but at 4,000 they said he got 25, and at 6,000 they said he got 30. So, it looks like on the audiogram that he has that characteristic notch for having some noise-induced hearing loss...probably due to wearing HAs for 6 months that he didn't need. But since the right ear is so good, and the loss is very slight in the left, they said he can keep them off for as long as his hearing stays stable.

I am going to take him somewhere else, though, to have him booth tested, because I almost believe they are trying to fudge things for a while and that when we go back in 3 months they will say, "Well, his hearing is great....can't explain it." I mean, how do I KNOW that he didn't respond at 15 at 4,000 and that they just marked 25? They have just had a weird attitude ever since the ABR...probably because they knew they were wrong and that I had been urging for months that he didn't have hearing loss. They can't really just come out and say, "Oh, yep, it was the fluid and we missed it...sorry...have a great life." I mean, they could really get sued for misdiagnosing him like that. So I almost feel like they are trying to gradually switch to a diagnosis of normal hearing. Maybe that all sounds crazy, but that's how I feel. And they also told me that him wearing the HAs would never damage his ears. Really? I just don't believe that for a second. You can't put hearing aids on someone and set them at levels for someone with a moderate hearing loss (even moderately-severe in one frequency) and tell me that won't cause hearing loss after 8-10 hours per day every day for 6 months.
 
We saw multiple audiologists and paid out of pocket for additional ABRs and booth testing, behavioral, OAEs. Only when every test had been repeated at least three times with the same exact results over the course of a year were we comfortable proceeding with our daughter's CI surgery. Our biggest fear was that the tests would show variability or conflicting data, but thankfully that was not the case for us. I can't imagine what this must have been like for you. Our center did tell us though that they would not implant with varying or conflicting data.
 
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