nvstac
06-17-2004, 04:26 PM
Hello,
My 9 yr old son was diagnosed w/otosclerosis 6 months ago and initially the ENT recommended that we come back for follow ups every 6 mos as there was only mild loss in his R ear. At his appt. yesterday they discovered further loss and apparently the ENT is going to consult w/a colleague to see about starting some kind of steriod therapy. I've been reading up a bit about otosclerosis and now have lots of questions:
1) i've never seen anything about steriod therapy in conjunction with otosclerosis. Has anyone ever heard of this?
2) our water is not fluoridated - should he be taking fluoride supplements?
3) prior to the diagosis he was sent for blood work, ekg and ct-scan - all of which came back normal. Shouldn't they have seen something on the ct-scan?
4) at his first appt. dr indicated that he wouldn't ever be a candidate for surgery as his loss is sensoryneural. Is this true?
5) my 5 yr old daughter was also tested and also shows signs of otosclerosis - although her hearing is currently "border-line" normal. ENT indicated that her loss is conductive and she will be able to have surgery - but not for many years. I don't understand this - won't she eventually have SNL loss too? Fortunately she's still young enough where the ped's will still prescribe fluoride supplements for her (although they say she doesn't need it).
I'm so sorry to ask so many ignorant questions. Unfortunately my husband took my son to the ENT yesterday (i was at work) and as usual didn't ask any questions. The ENT is supposed to call us after he consults w/his colleague but who knows when that'll be!
Thanks to all who can answer some questions for me!
nvstac
My 9 yr old son was diagnosed w/otosclerosis 6 months ago and initially the ENT recommended that we come back for follow ups every 6 mos as there was only mild loss in his R ear. At his appt. yesterday they discovered further loss and apparently the ENT is going to consult w/a colleague to see about starting some kind of steriod therapy. I've been reading up a bit about otosclerosis and now have lots of questions:
1) i've never seen anything about steriod therapy in conjunction with otosclerosis. Has anyone ever heard of this?
2) our water is not fluoridated - should he be taking fluoride supplements?
3) prior to the diagosis he was sent for blood work, ekg and ct-scan - all of which came back normal. Shouldn't they have seen something on the ct-scan?
4) at his first appt. dr indicated that he wouldn't ever be a candidate for surgery as his loss is sensoryneural. Is this true?
5) my 5 yr old daughter was also tested and also shows signs of otosclerosis - although her hearing is currently "border-line" normal. ENT indicated that her loss is conductive and she will be able to have surgery - but not for many years. I don't understand this - won't she eventually have SNL loss too? Fortunately she's still young enough where the ped's will still prescribe fluoride supplements for her (although they say she doesn't need it).
I'm so sorry to ask so many ignorant questions. Unfortunately my husband took my son to the ENT yesterday (i was at work) and as usual didn't ask any questions. The ENT is supposed to call us after he consults w/his colleague but who knows when that'll be!
Thanks to all who can answer some questions for me!
nvstac
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zip2play
06-17-2004, 06:08 PM
nvstac,
You need some moore opinions...go to a top notch otosurgeon.
Some of the anomalies:
Otosclerosis is almost never the cause of problems for a child, typical age of serious hearing problems is 30.
Otosclerosis doesn't typically tie in with sensory-neural loss, though both COULD occur independently. Again, age is a bit of a problem here.
Steroids are usually for an infalmmatory process so that's confusing too.
Your daughter's conductive loss is SLIGHTLY a more rational diagnosis but I really have trouble comprehending extensive otosclerosis in such a young child!
Do you or your spouse have otosclerosis? It's highly familial.
You might benefit by reading the gargantuan STAPEDECTOMY (called STAPEDECTORMY :D) thread down the page a bit.
Yes, I think fluoride in small doses might be appropriate once the oto is confirmed.
You need some moore opinions...go to a top notch otosurgeon.
Some of the anomalies:
Otosclerosis is almost never the cause of problems for a child, typical age of serious hearing problems is 30.
Otosclerosis doesn't typically tie in with sensory-neural loss, though both COULD occur independently. Again, age is a bit of a problem here.
Steroids are usually for an infalmmatory process so that's confusing too.
Your daughter's conductive loss is SLIGHTLY a more rational diagnosis but I really have trouble comprehending extensive otosclerosis in such a young child!
Do you or your spouse have otosclerosis? It's highly familial.
You might benefit by reading the gargantuan STAPEDECTOMY (called STAPEDECTORMY :D) thread down the page a bit.
Yes, I think fluoride in small doses might be appropriate once the oto is confirmed.
nvstac
06-18-2004, 02:53 PM
Thank you Zip2Play!
I think I really need to get another opinion. I wasn't sure about this diagnosis - although I did see on one of the hundreds of sites I visited that oto could start as early as age 8 (when he was initially "diagnosed"). I figured we were lucky that the school district tests kids every other year and the first audiologist we saw was impressed that it was caught at all.
Re: the rest of the family - my grandmother was deaf in one ear but as a result of having her L mastoid removed as a child (1920's Poland - who knows!). On my husband's side, his father was and his eldest sister is also deaf in one ear - although my mother in law says both were from ear infections that weren't treated properly. Then again - we're talking 40-70+ yrs ago in Ireland so we can't be sure. Needless to say, under the circumstances, otosclerosis seemed like a real possibility.
Clearly I need to do some research and find a good otosurgeon although I am curious as to why the current ENT thinks steriods might help.
Thank you so much again for your reply!
I think I really need to get another opinion. I wasn't sure about this diagnosis - although I did see on one of the hundreds of sites I visited that oto could start as early as age 8 (when he was initially "diagnosed"). I figured we were lucky that the school district tests kids every other year and the first audiologist we saw was impressed that it was caught at all.
Re: the rest of the family - my grandmother was deaf in one ear but as a result of having her L mastoid removed as a child (1920's Poland - who knows!). On my husband's side, his father was and his eldest sister is also deaf in one ear - although my mother in law says both were from ear infections that weren't treated properly. Then again - we're talking 40-70+ yrs ago in Ireland so we can't be sure. Needless to say, under the circumstances, otosclerosis seemed like a real possibility.
Clearly I need to do some research and find a good otosurgeon although I am curious as to why the current ENT thinks steriods might help.
Thank you so much again for your reply!
Biblophile
07-05-2004, 05:29 PM
Hi nvstac!
Otosclerosis isn't common in kids, but there are kids out there who have it.
It's listed on quite a few pedatric sites out there. Otosclerosis doesn't typically tie in with sensory-neural loss, though both COULD occur independently.
Yes, but a lot of the sites say that Oto does tie in with SN loss, although it's quite rare.
A word of advice although this really isn't directly related to the topic.....
If it does turn out that your children will lose their hearing, please please try to be as upbeat and positive as you can be about their disabilty. Tell them "Deaf and hard of hearing people can do ANYTHING except hear!"
Be positive about them getting hearing aids for example. Encourage them to get the cool colored aids instead of the old lady aids...look into resources for dhh kids in your state. Give them the WORLD and the abilty to choose. They may not need a special school or special classes, but that doesn't mean that for example they wouldn't benifit from a summer camp for dhh kids or learning Sign. The trouble with raising hoh kids is that very often the expert advice is to focus on hearing and speaking skills. Those are important, but far too often parents forget that we hoh folks are just as deaf as we are hearing, so we fall through the cracks (especially emoitonally and socially) As a result we tend not to feel like we belong so we have high rates of alcholism, drug abuse etc. Hoh people can parcipate in the deaf world...there are a significent percentage of hoh kids who are born to Deaf families, and as a matter of fact back in the early '80's about 30% of hoh kids were learning Sign. Just be openminded and give your kids the world!!!!!!!!!!!!!!!!!!!
Otosclerosis isn't common in kids, but there are kids out there who have it.
It's listed on quite a few pedatric sites out there. Otosclerosis doesn't typically tie in with sensory-neural loss, though both COULD occur independently.
Yes, but a lot of the sites say that Oto does tie in with SN loss, although it's quite rare.
A word of advice although this really isn't directly related to the topic.....
If it does turn out that your children will lose their hearing, please please try to be as upbeat and positive as you can be about their disabilty. Tell them "Deaf and hard of hearing people can do ANYTHING except hear!"
Be positive about them getting hearing aids for example. Encourage them to get the cool colored aids instead of the old lady aids...look into resources for dhh kids in your state. Give them the WORLD and the abilty to choose. They may not need a special school or special classes, but that doesn't mean that for example they wouldn't benifit from a summer camp for dhh kids or learning Sign. The trouble with raising hoh kids is that very often the expert advice is to focus on hearing and speaking skills. Those are important, but far too often parents forget that we hoh folks are just as deaf as we are hearing, so we fall through the cracks (especially emoitonally and socially) As a result we tend not to feel like we belong so we have high rates of alcholism, drug abuse etc. Hoh people can parcipate in the deaf world...there are a significent percentage of hoh kids who are born to Deaf families, and as a matter of fact back in the early '80's about 30% of hoh kids were learning Sign. Just be openminded and give your kids the world!!!!!!!!!!!!!!!!!!!
nvstac
07-05-2004, 06:22 PM
Hi Biblophile,
Thanks so much for your comments. I spoke with our ENT's nurse a week or so ago and my son is scheduled for an MRI to check for an Acustic Neuroma that may not have shown up on the CT-scan. Other than this, they don't have any idea what could be causing his hearing loss which went from mild to profound (in the mid-frequencies) in only 6 months. I'm a bit terrified, actually alot terrified, but I'm trying to be positive and my son doesn't seem at all worried - thank God. I asked him the other day if he'd like to learn to Sign with me and that it would be cool for us to have our own language at home. He was all for it - so I'm currently looking into classes for us.
Your idea about sending him to a camp for dhh kids is great - and I'll start looking into that too. Meanwhile - it's business as usual - he's out playing baseball, soccer and swimming w/his friends...I just have to remind myself to be a little patient with him and that sometimes he really isn't being your typical 9 yr old who doesn't listen - sometimes he really isn't hearing.
Thanks again for taking the time to send me some advise. I truly appreciate it!
Thanks so much for your comments. I spoke with our ENT's nurse a week or so ago and my son is scheduled for an MRI to check for an Acustic Neuroma that may not have shown up on the CT-scan. Other than this, they don't have any idea what could be causing his hearing loss which went from mild to profound (in the mid-frequencies) in only 6 months. I'm a bit terrified, actually alot terrified, but I'm trying to be positive and my son doesn't seem at all worried - thank God. I asked him the other day if he'd like to learn to Sign with me and that it would be cool for us to have our own language at home. He was all for it - so I'm currently looking into classes for us.
Your idea about sending him to a camp for dhh kids is great - and I'll start looking into that too. Meanwhile - it's business as usual - he's out playing baseball, soccer and swimming w/his friends...I just have to remind myself to be a little patient with him and that sometimes he really isn't being your typical 9 yr old who doesn't listen - sometimes he really isn't hearing.
Thanks again for taking the time to send me some advise. I truly appreciate it!
Biblophile
07-06-2004, 06:26 PM
Other than this, they don't have any idea what could be causing his hearing loss which went from mild to profound (in the mid-frequencies) in only 6 months. I'm a bit terrified, actually alot terrified, but I'm trying to be positive and my son doesn't seem at all worried - thank God. I did read that in about 70% of cases of sudden hearing loss doctors never find a reason for the loss. I asked him the other day if he'd like to learn to Sign with me and that it would be cool for us to have our own language at home. He was all for it - so I'm currently looking into classes for us. Excellent! Are you near a school for the Deaf or a regional collabrative for the Deaf? Maybe you should contact your state's Office for the Deaf and Hard of Hearing, they can give you TONS of info and leads on where to take Sign classes.
Your idea about sending him to a camp for dhh kids is great - and I'll start looking into that too. Meanwhile - it's business as usual - he's out playing baseball, soccer and swimming w/his friends...I just have to remind myself to be a little patient with him and that sometimes he really isn't being your typical 9 yr old who doesn't listen - sometimes he really isn't hearing. :) Glad to be of assistance. I think sending him to a dhh camp would help him meet other kids like him. I remember thinking that I was the only one in the entire world who was dhh. It would have helped SO much if I'd known other kids like me. I grew up in a horrible Stepford town(you know the type where all the girls are anorexic and the popular kids are the jocks and cheerleader types?) and I remember thinking that I wasn't "normal" (got picked on b/c of my voice)
Remember too, that along with his hearing issues, he's still a kid. Even if he wears hearing aids, signs, cues, parcipatates in auditory-verbal therapy, etc he's still going to be into everything that other kids are going to be into. He is STILL going to be a typical everyday kid!
I can't remember if I'm allowed to post info about other resources, but there are tons of UBBs and listservs out there for dhh kids. There is a good listserv for parents of deaf and hard of hearing kids, affliated with the American Society For Deaf Children called parentdeaf-hh. There are also some nice sites out there for deaf and hard of hearing people, such as alldeaf that welcome posts and inquires by hearing parents. Please please avoid AG Bell "healthy normal" sites like hearingexchange (let's just say they are VERY closed minded and heavy handed with the ban feature and the edit button. I have a friend who has unilateral loss and even he couldn't believe how extreme that place was) VERY glad I could help you! :D :D :D
Your idea about sending him to a camp for dhh kids is great - and I'll start looking into that too. Meanwhile - it's business as usual - he's out playing baseball, soccer and swimming w/his friends...I just have to remind myself to be a little patient with him and that sometimes he really isn't being your typical 9 yr old who doesn't listen - sometimes he really isn't hearing. :) Glad to be of assistance. I think sending him to a dhh camp would help him meet other kids like him. I remember thinking that I was the only one in the entire world who was dhh. It would have helped SO much if I'd known other kids like me. I grew up in a horrible Stepford town(you know the type where all the girls are anorexic and the popular kids are the jocks and cheerleader types?) and I remember thinking that I wasn't "normal" (got picked on b/c of my voice)
Remember too, that along with his hearing issues, he's still a kid. Even if he wears hearing aids, signs, cues, parcipatates in auditory-verbal therapy, etc he's still going to be into everything that other kids are going to be into. He is STILL going to be a typical everyday kid!
I can't remember if I'm allowed to post info about other resources, but there are tons of UBBs and listservs out there for dhh kids. There is a good listserv for parents of deaf and hard of hearing kids, affliated with the American Society For Deaf Children called parentdeaf-hh. There are also some nice sites out there for deaf and hard of hearing people, such as alldeaf that welcome posts and inquires by hearing parents. Please please avoid AG Bell "healthy normal" sites like hearingexchange (let's just say they are VERY closed minded and heavy handed with the ban feature and the edit button. I have a friend who has unilateral loss and even he couldn't believe how extreme that place was) VERY glad I could help you! :D :D :D
zip2play
07-07-2004, 11:12 AM
nvstac,
Don't worry needlessly (take a hint from your child.) If it's acoustic neuroma or an otosclerotic process that's causing the bulk of the loss a surgical procedure will effect a cure without even an overnight in the hospital.
Odds are good that will be the outcome.
Ear surgery has progressed millenia in the last forty years.
Don't worry needlessly (take a hint from your child.) If it's acoustic neuroma or an otosclerotic process that's causing the bulk of the loss a surgical procedure will effect a cure without even an overnight in the hospital.
Odds are good that will be the outcome.
Ear surgery has progressed millenia in the last forty years.
nvstac
07-09-2004, 06:53 PM
Biblophile and zip2play,
Thank you both!!!!
My son had his MRI this morning and now for the fun part...waiting for the results.
Funny enough, I found out a couple of days ago that one of his best friends is also going to an ENT because he's been experiencing tinnitus for a couple of months (which my son also has). When I told my son, he was delighted! Last night he found out that one of his other good friends is on his 6th set of tubes and has mild loss in both ears and that one of my good friends (who is beautiful and successful and whom he admires tremendously) is blind in one eye - all reassuring him that NO ONE is perfect and he is just as "normal" as everyone else.
Although I'd love to hear that there'll be some kind of quick fix for his loss, I'm not counting on it...and I'm prepared for the ENT to tell me there's no explanation at all. Either way, I'm glad I found this site and thank you for your time and support!
nvstac
Thank you both!!!!
My son had his MRI this morning and now for the fun part...waiting for the results.
Funny enough, I found out a couple of days ago that one of his best friends is also going to an ENT because he's been experiencing tinnitus for a couple of months (which my son also has). When I told my son, he was delighted! Last night he found out that one of his other good friends is on his 6th set of tubes and has mild loss in both ears and that one of my good friends (who is beautiful and successful and whom he admires tremendously) is blind in one eye - all reassuring him that NO ONE is perfect and he is just as "normal" as everyone else.
Although I'd love to hear that there'll be some kind of quick fix for his loss, I'm not counting on it...and I'm prepared for the ENT to tell me there's no explanation at all. Either way, I'm glad I found this site and thank you for your time and support!
nvstac