our story.

birdlady said:
It is wonderful that you are a parent that takes the time to see that your daughter is saife. If you could get one of her little friends to help her that would also help. But the school should take care of all of this and not give her a label.. Given the right direction I am sure she will do great..and thanks for doing a great Job with your daughter..Linda
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thankyou.
i really am trying the best i can to make sure i cover all my bases. its overwhelming for me and for k, not knowing where to start.
 
Calm down. No one here is calling you a liar nor a bad parent. We are glad you came to the board. Some of us are deaf and we are blunt in our ways. I am one. I am sure you are doing what you can in this tuff time for your daughter as any of us mothers would. I do challenge you however not to walk away from any audi when they refuse to answer your questions. If you can be this out spoken with us here you can also be verbal with the audi and blast him away as well. Dont leave any office with questions in mind. I am glad you are seeking help for your daughter. Let us know how things turn out for her. Good luck.
 
Courtneydang said:
no, i get hostile when negative judgement is passes on me, by people who dont know the entire story.
when you call someone a liar, and say they are an unfit neglectful parent, you can expect them to get hostile.
you do not know my story, you dont know what ive been threw with my daughter. you know a few of sentences i CHOSE to share. why dont you take a couple extra seconds to try to see things past the tip of your nose, and try to understand. the only thing you have said was i was a bad parent for not getting tubes, when you have no idea the situation i was in, financially or otherwise, or if the tubes would have even worked.
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I believe we already remarked that your finances should have nothing to do with how you take care of your daughter. Seek alternate means.

You are really happy with the advice you receive by our self declared "expert" who has no experience with deaf ed other than that she romanticizes it.

Deaf ed is great, but you need to take care of the child's health problems. You are putting the cart before the horse.
 
Angel1989 said:
Might be what a lot of us have, tinnitus!!! It is awful. There is a thread about tinnitus on this site. Take a look it might help.
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is there anything you suggest to help her until her doctor appointment? i cant get her to her pediatrician before the 17th. or do you think i should take her into an immediate care?
she doesnt have an ear infection, and shes not having a fever. so im not sure if the ic center can do anything.
but shes been up the past two nights. she said "the bees" are giving her a headache, that tylenol and motrin arent helping. shes really just laying around plugging her ear.

*im NOT asking for medical advice, just OPINIONS and what works for you. she DOES have a doctors appointment for as soon as i could get her in. just in case anyone is thinking im using the forum as a substitute for a doctor.
 
Bottesini said:
I believe we already remarked that your finances should have nothing to do with how you take care of your daughter. Seek alternate means.

You are really happy with the advice you receive by our self declared "expert" who has no experience with deaf ed other than that she romanticizes it.

Deaf ed is great, but you need to take care of the child's health problems. You are putting the cart before the horse.
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money wasnt the only reason i choose not to do the surgery. the ENT was very confident the surgery wasnt necessary, and with her other medical issues, i was not comfortable sedating her for something that probably wouldnt do much good. so i did the what the doctor DID believe would help, i subjected my daughter to allergy testing, and twice weekly allergy shots for over a year.
yes i am happy with the advice ive gotten from deafdyke, shes been very understanding and offered me options to look into that i didnt know about, which is why i came to the forum. for advice from other HOH people or parents of HOH babies. deafdyke might not have experience/training in deafed, but she is deaf, and has REAL LIFE experience being deaf. i value her opinion.
whether or not deafed and speech are best for my daughter, is up to me and her doctors/school to decide.

now i dont know what could cause the problems shes having, but ill be looking into things other users have posted. THATS why i came here, to learn from people with real life experience. because typing in "what causes hearing loss" into google doesnt lead to many answers.
 
Courtneydang said:
is there anything you suggest to help her until her doctor appointment? i cant get her to her pediatrician before the 17th. or do you think i should take her into an immediate care?
she doesnt have an ear infection, and shes not having a fever. so im not sure if the ic center can do anything.
but shes been up the past two nights. she said "the bees" are giving her a headache, that tylenol and motrin arent helping. shes really just laying around plugging her ear.

*im NOT asking for medical advice, just OPINIONS and what works for you. she DOES have a doctors appointment for as soon as i could get her in. just in case anyone is thinking im using the forum as a substitute for a doctor.
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If it's tinnitus there isn't a lot they can do.

The best way to manage tinnitus is to find ways to cope with it - not get over tired, not get over stressed etc. Also she may find that having a pink or white noise machine is helpful - or classical music (no words) playing in the background will help her cope because it distracts the brain.


Would it be possible for you to post your daughter's actually Audiogram (blank out personal info first!)? If we could see where she's at, we could help more.

Also - when you do go to the Audiologist (not a family doctor who does "a hearing test") please ask them about if the BAHA - it stands for "Bone Anchored Hearing Aid" and is primarily for conductive hearing loss (& tends to work better than in the ear hearing aids for purely conductive loss).
 
Anij said:
If it's tinnitus there isn't a lot they can do.

The best way to manage tinnitus is to find ways to cope with it - not get over tired, not get over stressed etc. Also she may find that having a pink or white noise machine is helpful - or classical music (no words) playing in the background will help her cope because it distracts the brain.


Would it be possible for you to post your daughter's actually Audiogram (blank out personal info first!)? If we could see where she's at, we could help more.

Also - when you do go to the Audiologist (not a family doctor who does "a hearing test") please ask them about if the BAHA - it stands for "Bone Anchored Hearing Aid" and is primarily for conductive hearing loss (& tends to work better than in the ear hearing aids for purely conductive loss).
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i can try to post them, i have them scanned into my compter so i can send them to her school on tuesday. i just gotta figure out how. and if you could help me understand what it means. that would be lovely.
 
Just blank out the name etc using a computer program like "paint" (or anything you have on your computer. Save it as a jpeg, then when you create a post here use the "go advanced" option and then click on the little picture icon (yellow, mountains & a sun pic) and upload the picture.
 
IMG_0001_zps34ae686a.jpg
 
The word recognition is very good.

Regarding the tinnitus, unfortunately, there's not a heckuva lot you can do about that. Taking her to emergency care likely won't help. :( Many deaf (including myself) suffer from tinnitus. The above suggestion about music is good, I do the same for myself. Find some soft, soothing noises OTHER than what your daughter hears daily, it may help.
 
I was thinking about a show I watched where someone actually had a bug in their ear. Gross!!! If she is experiencing pain maybe you should get her checked out. The 17th is still a long way away. Good luck!!
 
Looks like the reading indicates conductive type heari g loss. This means your daughters hearing loss is in the middle ear. Could be with bone conductive loss. She could of had fluid build up in her ears when the test was done. The test does not say your lil girl has a sensornerol loss which is perment hearing loss. Conductive hearing loss can be corrected with either tubes, waiting for middle ear infection to clear up, middle ear surgery to correct the tiny bones in the middle area known as the stirrup, hammer, and i cant remember last one. Maybe someone can help me here. The sensoral inner ear hearing loss is where the hearing nerve cells in the cochlear have been damaged and cannot be repaired. Please excuse my poor spelling. Anyways, this may be the reason the ENT, or Audi has been holding back on fitting her with hearing aids. my own experience and my degrees i hold, one in education of the deaf , hearing airs are not given to children or to anyone with a conductive hearing loss because the hearing loss can can be corrected. If they were to put the HA on her then with time and long use she will adventure destroy good cochlear nerve cells. Im sure the ENT and Audi are thinking about this. So, seems like you may need to have her tested again see if theres any improvement. She may need tubes in her ears. Your primary doctor is your best bet as well as a good ENT. I hope others will chip in and also share feedback. But be glad it says conductive hearing loss....which can be repaired....and it doesnt say sensorial hearing loss which is permament and cant be repaired.
 
Based on her Audiogram - absolutely get them to talk to you about BAHA - her bone conduction readings are quite good (which is a very good thing).

Unfortunately it doesn't give the db level associated with her word recognition scores... so that's not as helpful as it could be (no fault of yours).

If you'd like to learn a bit more about BAHA yourself, so you're at least a bit "educated up" by the time you see the Audie and ENT etc ... here are a few resources.

Cochlear - BAHA
Oticon -Ponto BAHA
BAHA user support group
 
deafgam said:
Anyways, this may be the reason the ENT, or Audi has been holding back on fitting her with hearing aids. my own experience and my degrees i hold, one in education of the deaf , hearing airs are not given to children or to anyone with a conductive hearing loss because the hearing loss can can be corrected. If they were to put the HA on her then with time and long use she will adventure destroy good cochlear nerve cells. Im sure the ENT and Audi are thinking about this. So, seems like you may need to have her tested again see if theres any improvement. She may need tubes in her ears. Your primary doctor is your best bet as well as a good ENT. I hope others will chip in and also share feedback. But be glad it says conductive hearing loss....which can be repaired....and it doesnt say sensorial hearing loss which is permament and cant be repaired.
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HUH?!?!?! I have a conductive loss and have worn hearing aids for 30 years. There are also a lot of people with atresia who have worn aids (and not just bone conductive aids) due to conductive losses.....it's also possible she may have pediatric otoscloeriois or something else that can't be treated surgicly.....That's actually maybe a reason why she's falling through the cracks......or maybe b/c the orgional doc was an ass...........I mean most docs don't express hearing loss in percentages. I WOULD go and see another doc.....
 
deafgam said:
Anyways, this may be the reason the ENT, or Audi has been holding back on fitting her with hearing aids. my own experience and my degrees i hold, one in education of the deaf , hearing airs are not given to children or to anyone with a conductive hearing loss because the hearing loss can can be corrected. If they were to put the HA on her then with time and long use she will adventure destroy good cochlear nerve cells.
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Your statement isn't at all consistent with what my Audiologists have said, nor what I've seen with children with conductive hearing loss. I will say that with pure conductive loss (versus mixed loss) it is more common for Audies to recommend a softband BAHA than a traditional in the ear hearing aid. BAHA totally eliminates any risk of causes SNHL due to over-stimulation of the nerves.
North of where I live we have a number of First Nations children who have a genetic form of conductive hearing loss, which is surgically improvable once they are teens - every single one of these children is fitted with hearing aids (typically BAHA softband) until they are old enough to have the corrective surgery.

I hope others will chip in and also share feedback. But be glad it says conductive hearing loss....which can be repaired....and it doesnt say sensorial hearing loss which is permament and cant be repaired.
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I'm sorry, your information on this is incorrect.
Not all Conductive hearing loss is 'repairable'.
In some situations it is able to be surgically improved or rarely completely corrected, however MOST of the time conductive hearing loss is due to other medical conditions (T.C. etc) which create permanent conductive hearing loss.
 
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Bottesini said:
I believe we already remarked that your finances should have nothing to do with how you take care of your daughter. Seek alternate means.

You are really happy with the advice you receive by our self declared "expert" who has no experience with deaf ed other than that she romanticizes it.

Deaf ed is great, but you need to take care of the child's health problems. You are putting the cart before the horse.
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WHAT THE FUCK? Botti, I'm not telling her to send her daughter off to Deaf School to live in the dorms. I am ALSO not a Deaf Studies major who has little to no experience with Deaf Schools/deaf ed.
ALL I told her was that it's a good idea to look into local dhh programs, b/c they can be a very good resource. Her daughter might not need such a placement.........heck her daughter qualifies more then someone I knew from a listserv who was all excited that there was a Deaf School with an Autism program. The thing is, her son had a unilateral loss and some mild anxiety. (she claimed it was "autism)
If this was a blind/low vision forum I'd tell her to look into the local Blind Children's Center/Lighthouse.
I do understand that deaf ed doesn't exactly produce a lot of kids who go to Harvard or other very competive schools, but neither does the mainstream.
My point is that parents of dhh kids SHOULD look into Deaf ed....it might actually provide some good resources for them. You've seen the kids who've fallen through the cracks haven't you? Enough said. Yes, I realize that there were low expectations when you were in the system....but that also doesn't mean that the mainstream automaticly has high expecations......far from it. If that's true, then how come so many parents here have found Deaf Ed to be something very benifical for their kids, AFTER inclusion?!?!?
 
Anij said:
Your statement isn't at all consistent with what my Audiologists have said, not what I've seen with children with conductive hearing loss. I will say that with pure conductive loss (versus mixed loss) it is more common for Audies to recommend a softband BAHA than a traditional in the ear hearing aid. BAHA totally eliminates any risk of causes SNHL due to over-stimulation of the nerves.
North of where I live we have a number of First Nations children who have a genetic form of conductive hearing loss, which is surgically improvable once they are teens - every single one of these children is fitted with hearing aids (typically BAHA softband) until they are old enough to have the corrective surgery.



I'm sorry, you're information on this is incorrect.
Not all Conductive hearing loss is 'repairable'.
In some situations it is able to be surgically improved or rarely completely corrected, however MOST of the time conductive hearing loss is due to other medical conditions (T.C. etc) which create permanent conductive hearing loss.
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Maybe Deafgasm is talking about aquirred conductive loss in adults, vs conductive loss in children.......I thought conductive loss in kids was pretty rare.
 
deafdyke said:
WHAT THE FUCK? Botti, I'm not telling her to send her daughter off to Deaf School to live in the dorms. I am ALSO not a Deaf Studies major who has little to no experience with Deaf Schools/deaf ed.
ALL I told her was that it's a good idea to look into local dhh programs, b/c they can be a very good resource. Her daughter might not need such a placement.........heck her daughter qualifies more then someone I knew from a listserv who was all excited that there was a Deaf School with an Autism program. The thing is, her son had a unilateral loss and some mild anxiety. (she claimed it was "autism)
If this was a blind/low vision forum I'd tell her to look into the local Blind Children's Center/Lighthouse.
I do understand that deaf ed doesn't exactly produce a lot of kids who go to Harvard or other very competive schools, but neither does the mainstream.
My point is that parents of dhh kids SHOULD look into Deaf ed....it might actually provide some good resources for them. You've seen the kids who've fallen through the cracks haven't you? Enough said. Yes, I realize that there were low expectations when you were in the system....but that also doesn't mean that the mainstream automaticly has high expecations......far from it. If that's true, then how come so many parents here have found Deaf Ed to be something very benifical for their kids, AFTER inclusion?!?!?
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No need to swear. She needs to find out what is causing her daughter's problems with hearing, and make sure it is not something that is dangerous to her overall health.
 
deafdyke said:
Maybe Deafgasm is talking about aquirred conductive loss in adults, vs conductive loss in children.......I thought conductive loss in kids was pretty rare.
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It's less common in young children than SNHL - but it's not really rare.
There are a number of genetic and congenital medical conditions which cause either pure conductive hearing loss, or mixed loss that is largely conductive with a small SNHL component.
 
Actually i was referring to a conductive hearing loss that was just occuring before the person went without normal heari g allowing the nerve cells to die off that wasnt getting stimulated. Then, if that occurs yes, hearing aids are needed. Also, if the conductive hearing loss cant be repaired dued to deformative of inner ear or other reasons the surgeon cannot fix, hearing aids would help. This is what happened with my dad. I do offer my appolgy . I had forgotten this. Dont crucify me here. I think we all want to help advice courtney without upsetting one another. Lets get excitted about her lil girl going to see a new ENT. Forget about all this yelling. Gosh....is it a full moon tonight? Wow!
 
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