dereksbicycles

I got meningitis when I was 1 years old.

Deafness

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leahsmom

hi my daughter is deaf , she is 7 years old im in ireland and we find it impossible to get answers for her. i dont know how to get answers and am trying sooooo hard but getting nowhere. my doc just shrugs his shoulders. i have had her blood tested for the major virusis and that came back negative. made doc under protest give her mri on ears and went into hosp for day waited for 2 weeks for results only to be told only mri ed her brain not ears as thats not nessasary. ???? all connections to her ears from brain was normal. there was 2 little areas of damage in a complete seperate part of her brain but nothing to do with ears. what did ye all get done or tested to get your diagnosis. doc said he could put us fortward for gentic testing if we want but he says its a big deal and kind of put us off plus im afraid in a way what could they find. but really o'ther than her hearing leah is perfect in every way

Lavender

I was not born deaf had a high fever n' measles.

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cool scary guy

The reg on a nove went out....blow up in my hand

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.The test demo for the finger spelling part is back up,
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This is only a test posted to get feed back, and suggestions.

jillio

Hi, leah'smom! As another parent, I want to comment on this. Does it really matter "why" leah is deaf? All that really needs to be dealt with is the fact that she is deaf. The "why" won't change that at all. As parents, we sometimes drive ourselves nutty worrying about things that really aren't important in the grand scheme of things.

Anij

I'm deaf because God made me this way - and I'm grateful for it

I was born profoundly deaf on the right (now +120db, ie. completely deaf ) due to unknown cause

My left side is hoh due to chronic ear infections

I consider myself Hoh/Deaf (caps intentionally)

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Hoh/Deaf ~ +120db deaf right , mild/mod flux left & APD
English & ASL ...PAH!!


Ignorance is NOT Bliss

JoeyDeafNinja

Same here, dude. Expect my cousin were born deaf about three years ago.

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Strength and thrown off reason and reality
Cut myself and screamed for their insanity
Wake up to this nightmare that will never end
Main attraction of this twisted master plan
I will be your deadman
With nothing but this blood on my hands
Stuck in your wonderland
I wanna make you bleed just like me
So make me your deadman
With only poisoning in my veins
Stuck in your wonderland
Stagnated by the passivity
I'm gonna make you bleed like me

Speedy Hawk

Maybe she can't accept it until she knows why? My family couldn't accept I was Deaf until they know why I was born Deaf, they really needed to know that before they do anything and lucky they found out easily and quickly.

sallylou

Leah's mom, my ASL teacher went deaf suddenly when she was 8. No apparent cause. No virus/bacteria, no oto-toxic medication, no deafness in the family, etc. It just happens sometimes. She's a great teacher and all-around good person.

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messymama

Our son is deaf from before birth - I'm sure of it because I remember thinking "How come he doesn't react to this?" when his sister had night terrors... She was screaming very loud in my arms, so close to my belly, and he kept on sleeping peacefullyIt took me one year to understand why!!! (I'm slow, I know).
We didn't investigate why. Doctors tried to convince us to do many exams, blood, genetics (in Italy they always search for connexine in this cases, and also recommend CI when they find out that is the cause - seems that connexine deafness doesn't get good results with HAs) but we refused... Because of what Jillio said: who cares after all? Doesn't make any difference, really. And we choose not to give him CI in any case, so we can take our time to see what he can do with hearing aids.

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Proud mum of two blessings: 5yo hearing girl and 3yo profoundly deaf boy

souggy

Constant ear infections from birth to age two. Nobody knows when. Diagnosed when I was five or six.

The "why" mattered because before discovering the fact I was deaf, I was classified as autistic.

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

GrendelQ

I was interested in knowing why for a few reasons. I wanted to know if my daughter's deafness is genetic or caused by something that might be linked to or have other as-yet undiscovered physical issues affecting her heart and other organs, her vision, etc.. I wanted to know if she had been deaf from birth or if she might have had hearing up to a point and then lost her hearing due to illness, accident, or medical treatment sometime before she turned 1, when we first met her to understand if she had any exposure to language. I wanted to know if her hearing loss was temporary -- caused by fluid, blockage, a tumor.

Seems like a pretty straightforward question that may not have anything to do with accepting Deafness.

I still don't know why my daughter is deaf, but by asking, we've ruled out the reasons I was most concerned with and made it possible for us to sleep easy at night knowing there's no associated syndrome, no brain tumor, and obtain special testing to ensure her heart and kidneys are healthy. We were able to make informed decisions about going ahead and using a visual language vs. tactile because we didn't expect Ushers-related blindness to kick in hard. And by knowing the nature of her hearing loss, knowing if it was a processing disorder, an auditory processing issue, cranial nerve vs. hair cell, conductive or sensorineural, we were able to determine the best plan for language, for educational environment, for assistive technology.

Leah's mom, you asked what tests were run, this isn't conclusive -- I'd have to flip through a scary amount of paperwork , and we repeated all the hearing tests several times over, but it's roughly what we did to determine why (or more accurately, what didn't cause her deafness) :

hearing (over several visits):

• behavioral audiometry tests (soundfield + then VRA with insert earphones)
• bone conduction testing
• Acoustic Immittance Measures (tympanometry, middle ear muscle acoustic reflex)
• ABR (auditory brainstem response) under sedation
• aided testing (after fitting with HAs)

genetic / other physical tests (one visit):

• Blood drawn for following tests
  • connexin 26 mutation
  • connexin 30 gene
  • mitochondrial DNA gene mutation (a whole bunch)
  • SLC26A4 (PDS) gene
  • PAX3 gene (Waardenburg I was initially suspected)
• ECG, cardio, respiratory, gi workup
• opthalmology
• renal ultrasound
• urinalysis
• examination and measurement of pigmentation, facial structure, body/limb structure

Once we seriously considered a CI:

• psych and development evaluations
• CT scan
• MRI

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leahsmom

hi everyone
yeah speedy hawk and grendal Q i can fully accept her deafness but its the fear that something could be causing it that can hurt her further.
my main worry is a syndrome of some sort. never thought about getting her heart and kidneys checked maybe i should??
thanks for all your info grendalQ i would love to be where you are now the worry taken away.

sallylou

leahsmom, knowing for prognosis would be helpful, but geneticists can't always make a diagnosis. I'm waiting until tests are more reliable for any testing. I'd like to know for my kids. Hearing loss is not why I want to know. There are other medical issues to consider.

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Sunshine

Interesting thread! Old, but interesting see. I wonder sometimes how everyone came be deaf. My deaf because cochlear aplasia.

DeafCaroline

Have no idea exactly why I'm deaf. Was born with a very severe case of jaundice and it's speculated that either jaundice (I wasnt put under the lamp) or medication to treat the jaundice resulted in hearing loss. My mother once told me her doctor suspected it was because she didn't consume enough vitamin E.

Mintee

i was born deaf.. idk what the cause was. but there's two deaf people on my grandfather's side of family..so it could be genetic

Deafguy25

My parents are Deaf as well, so I'm going to assume it is genetics.

jgwhite

When I was 18 months old, I had a tear duct blockage and had to be admitted in the hospital. When I was on antibiotics, the nurse was supposed to come in to lower my dose.....she forgot. The antibiotics burned my ear nerves.

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whatdidyousay!

Why do you feel it was fortunate to pass it on?? I was so happy my daughter and grandchild where NOT born hoh or deaf!

Sunshine

Weird. I hope my future children deaf.

Bottesini

I was joking a little. It's just kind of a fact that if there are deaf genes on both sides, a certain percentage will inherit.

Hearing or deaf family , both are fine with me.

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sallylou

Why do I even exist on this planet? Might as well make the most of it.

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souggy

Wirelessly posted

Botts is a very intelligent woman.

Her assets far outweighs the petty details of deafness. Her genes deserve to be passed on.

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

Bottesini

I liked this a lot, but I think it makes me narcissistic that I do!

Thanks, Souggy.

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souggy

Wirelessly posted

I came to understand all genes are valuable.

We would be very self-centric to say we supersede nature and can throw away the ones we don't think we need.

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

Smithtr

I know you profound on good English! impressive I know you clever good job!

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shel90

Wow! You wont be happy for Botts if she creates a huge dynasty that will rule the world?

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posts from hell

I was THRILLED to have my daughter born deaf. I think it was the last time I cried.

Mintee

i would love to have deaf children someday