Best Friend's Daughter Has Tinnitus at 5

Discussion in 'Support' started by kelpiemsp, Nov 18, 2018.

    1. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Hall of Fame

      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      Just got back from a visiting a close friend. They learned their daughter (5 years old) has around 40 dB of hearing loss and has trouble hearing around the “swooshing”. I asked if she was bothered by it... and her mom who is a Sensory and Perception PhD (mainly visual but some auditory) said “don’t you dare tell her about tinnitus”.

      This makes me think. If you had never known any different would you care? Her tinnitus is loud enough that you have to shout for her to hear over it. Yet I watched her lay down and go to sleep with no masking or otherwise.

      Anyways I feel terrible for her. Having tinnitus at a young age is truly torment.
       
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    2. Red
      Crappy

      Red Member

      Location:
      Northeast USA
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Noise Exposure (Headphones)
      I think life would be easier not ever knowing what you were missing but still hard. T can still increase with damage. Additionally you can grow to be jealous of others for having that opportunity of silence or you feel insignificant and less of a person for never getting the same chances other kids got.
       
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    3. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      If her baseline doesn't change, I don't think it will ever bother her because it is all she has known. If her perception of it did change (increased in volume), I am sure she would notice and it cause her distress.

      Having also never heard silence in my life, I can agree that tinnitus at a young age is particularly hard.
       
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    4. iGL0CK
      Thinking

      iGL0CK Member

      Location:
      Poland
      Tinnitus Since:
      09/2013
      Cause of Tinnitus:
      Acoustic trauma (punk rock show)
      I know it's hard to compare, but I've got visual snow since I remember all day and night and it doesn't bother me longer than few days when I've started to think about it.
      I think when you don't know life without it, it's just normal for you. For me it was really weird when I realized seeing flashes and snow isn't normal and other people can see just the pure dark. :bored:
       
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    5. Telis

      Telis Member Hall of Fame

      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Drugs barotrauma
      If you have to shout at her so she can hear, she’s not only got tinnitus, she’s almost completely deaf as well. She must have a hard time at school. Does she wear hearing aids ?
       
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    6. AUTHOR
      AUTHOR
      kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Hall of Fame

      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      They are figuring that out. She’s missing lots of stuff in school. The loss is conductive. I’m not sure what what means in terms of development. But possibly something with the ossicles.
       
    7. AUTHOR
      AUTHOR
      kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Hall of Fame

      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      I don’t think anyone sees pure dark. I have always seen little specs of lights that move like a kaleidoscope my whole life.
       
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    8. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I agree. I think most, if not all people, see noise (in their vision) in low light conditions.
       
    9. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      I'd be surprised if it was otosclerosis (very young for that!), but there are other ossicle problems that can arise at a young age. It can be "good news", though, as we do have some technology to repair ossicle chains. Not so much for hair cells yet, unfortunately.
       
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    10. Tinker Bell

      Tinker Bell Member Hall of Fame

      Location:
      U.S.
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      SSHL from virus
      How long has she had hearing loss?

      This is not something I’ve really shared here, but last year my daughter was diagnosed with conductive hearing loss. It was at least a 40dB loss in both ears. No fluid in her ears but her audiologist and allergist felt her Eustachian tubes were contributing. She took an allergy pill and used a nasal spray. After about three months, her hearing returned.

      She had tinnitus when she could not hear well and she occasionally experiences it even now. Her ears pop often, too. I always tell her it’s okay. There’s absolutely no reason to frighten her. Because of me, she is already cautious to avoid loud sounds. She will grow up knowing to protect her ears.

      Her pediatric audiologist has always had tinnitus. She said she never realized it was unusual.
       
    11. coffee_girl
      Innocent

      coffee_girl Member Benefactor

      Tinnitus Since:
      All my life, but got worse 2016
      Cause of Tinnitus:
      Noise induced / Concert
      Maybe ask her again in 10 years, away from her parents
       
    12. JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      There was a time when I was around 5 years old laying down at night in the dark and I focused on the "snow". I thought wow, that's weird that this is what darkness looks like. During the day or in bright light I never noticed it. Almost all the time I never thought about it and "tuned it out" because I was thinking about all kinds of other things. This year after withdrawing from medications and reading stuff on visual snow I started "noticing" it at times when there was low levels of light. Fortunately, I remembered about that night long ago and I knew it was a mind trick. I did not freak out, let the thoughts and emotions pass, and tuned it out again fairly quickly.
       
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    13. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      That's one tough little girl. I hope they accommodate her needs and help her live a productive life. Having intrusive tinnitus and profound hearing loss is no joke. Hopefully She's going to be eventually educated, on what she may face in her life. She will need lots of love, support and guiding in her life. I still believe that this little angel will have a bright future :)

      I hate seeing children suffer, I wish the best for her!
       
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    14. JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Have they tried fitting with her hearing aids? If so, how did it go? I wonder if hearing aids would help "lessen" the tinnitus.
       
    15. Deamon22

      Deamon22 Member Podcast Patron Benefactor Ambassador

      Location:
      Italy
      Tinnitus Since:
      06/2018
      Cause of Tinnitus:
      Head Trauma
      When i read that children have to face this condition it makes me feel terrible, i feel so sorry for her=(. I hope that within a few years we have at least something to keep tinnitus under control....
       
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    16. Red
      Crappy

      Red Member

      Location:
      Northeast USA
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Noise Exposure (Headphones)
      This is truly the most horrific part of these ear disorders: that they get worse and never stabilize. I will swim in pills if there was something like 99% guarantee this pill will protect against further acoustic trauma.
       
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    17. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I often say: why me? Why did God punish me so harshly?

      But 5 years old! Didn’t even start living and she’s given this heavy burden to carry.

      So unfair, so unfair God!!!!
       
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    18. Deamon22

      Deamon22 Member Podcast Patron Benefactor Ambassador

      Location:
      Italy
      Tinnitus Since:
      06/2018
      Cause of Tinnitus:
      Head Trauma
      I think i don't agree completely there with you. Mostly they get worse if someone has a repeated acoustic trauma (concert, clubs ecc. without earplugs). Thats something someone with tinnitus maybe should avoid.
      But i don't think that "tinnitus gets worse and never stabilizes" is something that we can state as a fact. Mostly there is a reason why it gets worse. We see that also many people here in the forum even after years tinnitus starts to fade or gets stable. And like always you have to remember that people whose tinnitus fades or remains stable rarely come back to the forum or stick around. Just my opinion though.

      My hope is that within a few years Bi-modal stimluation will keep tinnitus under control until there is a definitve cure:).

      Sorry for the off topic btw.
       
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    19. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Years ago I was seeing tinnitus councillor who was also a lecturer at university.
      So one morning before he started he told students to be patient with him as ringing in his ears is very bad and he’s got trouble hearing.

      After the lecture he said a young man approached him questioning the ringing ears. And councillor said: yes, I have tinnitus.
      Young man said that he’s had this noise in his head for as long as he can remember and he had no clue there was a name for it.
      He said he assumed that everyone has it.

      My councillor didn’t want to go into too many details because he was hit very hard by tinnitus, he was even hospitalised at one point and after he “habituated” a complex dental work 5 years ago caused his tinnitus to go to a catastrophic level. So he was once again in survival mode and didn’t want to scare the young man.

      So there is a chance that for those people tinnitus TRULY becomes “part of them” and I would like to think it’s probably not severe.

      It’s like being born blind and loosing the sight later in life! Can’t compare the two.

      I just wonder if it goes up and if they react to the increase. I’m sure if it would to reach severe level nobody could just be ok with it regardless for how long you’ve had it.
       
    20. Allan1967

      Allan1967 Member Benefactor Hall of Fame

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Tinnitus is fucking cruel. Best she grows up believing everyone hears it.
       
    21. Drone Draper
      Jaded

      Drone Draper Member

      Location:
      U.K.
      Tinnitus Since:
      12/2018
      Cause of Tinnitus:
      NIHL, ETD and work stress
      I think there are cases of people who are born with tinnitus who are basically 100% adapted/habituated because they've always known it and therefore don't care, at least not until they have a major spike of some kind.
       
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