Sedated ABR

[jelanismom]

Jelani is scheduled in May for a sedated ABR and I guess I just want to hear something like "oh don't sedate him for that!"

He was first diagnosed with hearing loss at 1 year old by way of sleep deprived ABR and then another at 2 years. It was read as sensorineural bilateral hearing loss. Then at 4 years old I took him for audiological testing in soundproof room and he wasn't at all cooperative, then again at 5 years no luck, he cried and hated the earplugs, however they put him at 40 decibles...I have no idea what that means. So now he's been scheduled for a sedated ABR because this will be the best way to determine his hearing loss. He's been sedated before for other things like T & A and nasal septum repair...and that was difficult enough. But...I feel uncomfortable about the whole anesthesia thing and want to just wait till he gets older to test him in the traditional soundproof room and tympanogram...I'm a chicken and a worry wart I guess. I read somewhere that sometimes MRI's are done also to identify the ears? Anway, I'm just not sure if I want the sedation and now I'm venting! I can tell you though, it's amazing how whenever I creep into his room and try no to disturb him, I'll stoop down to pick something up off the floor and my knee cracks, and he hears it!!! lol Now I'm just making excuses, but I really need your input. Thankyou.

[lespring]

First, go read here
www.hdhearing.com/Learning/Part2.htm

Then get the sedated ABR scheduled!

40 decibles would put him at the level of a mild/moderate hearing loss. It's considered a significant loss that he should be wearing hearing aids for. (kids with DS should be aided at 30 db's) 40 decibles does NOT equate a "40% hearing loss". If any audiologist ever tells you a percentage of hearing loss, find a different audiologist. A child can be at 40 db's in some frequencies, but not in others.

I didn't realize he had such a hearing loss, so it's not at ALL surprising that he's not talking much! If his hearing loss is the one most common to kids with DS, he would be missing high frequency sounds. That includes s, f, b, t, p, sh, th, k, ch. These high frequency sounds happen at the 15-30 decible range.

So, a sentence like "Go put your socks on" he would hear as " oh uh your ah on."

Do the sedated ABR and get the information you need! Jalani can hear, but he doesn't hear WELL. In other words, he can HEAR you, but that doesn't mean he can hear you well enough to UNDERSTAND you. And the knee cracking? That's a low frequency sound.

Oh, this might help you understand decibles a little bit

0 Decibels Threshold of hearing
10 Rustle of leaves
20 Water dripping
30 Whisper
40 Quiet radio in room
50 Moderate rainfall
60 Conversation, dishwasher
70 Busy traffic, vacuum cleaner
80 Alarm clock
90 Lawnmower
100 Snowmobile, chainsaw
110 Rock music
120 Jet plane takeoff

Normal hearing. Loss of 0 - 19 dB (decibels).

Mild hearing loss. Loss of 20 - 39 dB.
Symptoms: Unable to hear soft sounds. Cannot hear a whispered conversation in a quiet room. Can hear a normal conversation in a quiet room but has difficulty in a noisy environment

Moderate hearing loss. Loss of 40 - 59dB.
Symptoms: Has considerable difficulty hearing a normal conversation in a quiet room. If there is background noise, he will not be able to understand many of the words, unless he lip reads.

Severe hearing loss. Loss of 60 - 89dB.
Symptoms: Cannot hear a conversation unless the speaker speaks loudly.

Profound hearing loss. Loss of 90+ dB. Cannot understand speech even if the person speaks very loudly. Can only hear very loud sounds such as a chainsaw.

[momofrussell]

Dawn, you have too much time to think my dear LOL

Russell has had a sedated ABR when he was younger... and he just had an MRI and THAT was sedated so even if you did an MRI I'd betcha Jelani would be sedated for that too. Heck, Russell has to have Exams Under Anesthesia (EUA's) just to check his eyes.. and his dental work is done "under" also... Russell's last 10 yrs has been a plethora of sedations... sedation is his middle name LOL

Why were Jelani's other sedations "difficult enough"? Did he not do well with the sedation meds or you were just a nervous ninny?

A.

[jelanismom]

UH, he did well...I was the "Nervous NINNY!!!

Thanks you both, I just needed to ask after getting the call today. Boy I AM a warrywart...but I guess I let fear take over. Ya know I think it will be like Russell's many sedations...Jelani needs Opthomology checkup every 6 mos. and freaks out at the dentist and has a testicle issue...won't go there

Leah, how helpful and I'm going to bet the 40 dec. is at lower frequencies...only because he says quite well, spongebob and toast and bus...but not really complete sentences, so anyway another topic. I did answer you at another board to your hearing aid thread and one other one...did ja see it? thanks again...so now let me go put my head in the sand...and if I was at Liasmom's house it would be head in snow ;D

[jelanismom]

Thankyou Leah, very very helpful.

ok, I'll take him but I won't like it ...I'm really starting to worry more about myself, but you should know my mom and then you'd know how I got this way!

I might just print out your reply to keep and look back at.

[damarasmom]

Best of luck to you Dawn...I can understand being nervous, I too get a little crazy when it comes to appts. for Damara...but he will be fine and it's better to know and correct so he can continue to improve and actually hear what his silly crazy mama is saying!!! TeeHee

[lespring]

It could be I knew this at one time, but my memory is getting shorter by the day! LOL

[jelanismom]

very true,

let me jus give you a history of his last sedation, my last episode of manicmomness,,,,

He was in surgery for T & A and they gave me a pager so I could go about my nervousness elsewhere, lol. I ventured to the hospital cafeteria to unwind(?) and then started back up to the waiting area to wait more. I go to the desk to inquire about Jelani and how much longer till he'll be in recovery...I got the Shock of my life. The person at the desk said we were looking for you. (my throat closed up and I stopped breathing, turned blue) and I said huh? But my pager never went off, what's going on!!!! All she said was " the liason will speak with you."
Then to my relief it wasn't about Jelani, he was still in surgery, it was the request I had put in for hospital accomidation for overnight stay. I think I was expecting the worst and almost killed myself "thinking"

[jelanismom]

yes A` I have lotsa thinking time, LOL

Now about the accomidations...BIG JOKE>

Jelani was in recovery after T&A at Ucla and they wanted to keep him overnight, I knew this beforehand and had planned to sleep in the family type room of beds in the PICU. All went well with his surgery, he was recovering in PICU and I went to have a looksee at the bed situation. I saw that there were about 8 beds in a dark room and some people were in them sleeping, of course.
I asked the nurse which one was mine? She whispered this one...but then did a doubletake, someone was sleeping in my bed! She goes to her supervisor, they remove the uninvited person out of my bed, and then tell me I can have it now. LOL
I decided to NOT sleep there. The intruder had actually taken my name off the wall above the bed and put HERS, and she had a best girlfriend mom in the next bed over. I was told her baby was in critical condition in Nicu, a preemie, and that's why she did what she did. I thought about how Jelani was a preemie and how many sleepless nights I had and just decided to give up my bed to her...I also expected that her best friend might try to kill me or something in the middle of the night!
This wasn't supposed to be such a long story....but anyway, I come to find that while I sat next to Jelani's bed, the beepeing was going off non stop because thay had placed the pickline (or whatever it's called) in his thumbsucking arm.( he wouldn't suck his other thumb, lol) So he was crying trying to suck his thumb and yet the nurse wouldn't switch it to his other arm. So Jelani kept trying to bend his little arm to suck his thumb and would crimp the line and beeping was nonstop. So instead of sleeping, I knew my job was to stay awake at his bedside all through the night and hold his little arm straight....didn't sleep a wink, Jelani did well and was discharged in the morn., and I drove home as a zombi.
the end

[mollysmomma]

the ABR

ugh

we just had one...it is in office-outpatienty with a little
bit of nothing for sedation...non invasive

i wish i would have known about the BEHR
(?) which is inpatient TOTAL sedation

because molly wouldn't sedate...she dozed
but kept moving a little and even blinking an
eye can interfere with the reads...

it's ok to get the test..yours will probably do better
cuz molly is BIG! almost too big for the dosing they
can do..and that kind of testing is the ONLY way to know decisively about any hearing loss

funny story: we have a new EMT here with a 12 year
old audiologist. She conducted the first testing..and i
asked her if she'd ever worked with kids like molly.

"no"

so they lit up the duck

ms audiologist is not happy cuz molly isn't responding,
only moving her hands a little

now excuse me...but if you were in the business
of hearing loss...would you NOT know some basic
signing?

the movement of hands was molly signing
'more duck'


EEK!! we then got the referral to go to the real doctor
in springfield.

now...if we only could find a decent dentist.

[Googsmom aka Jennifer]

I've only had to have Brook's ears tested once so i'm totally unaware of the whole sedation thing. How in the world can they tell if someone can hear if they are sleeping? Is it the same as a new born hearing test? I don't even understand that test, they can't tell you they hear it I dunno.

Dawn, I am newly introduced to the fear of your child "going under the A". I understand and (((Hugs))) for you.

Leah, your so smart. How did you learn all that stuff ?

Did I read that right? A 12 year old audiologist You'd think they'd know sign language. I'm glad Molly get's to go to a new hearing doctor

[mydsgirl]

Hi, I just wanted to tell you that Emma had two sedated ABR's. They are wonderful in determining the amount of hearing loss. She had no problem with the sedation. They are now able to set her hearing aids off of the reading of this last ABR. It helps a great deal. BTY, she just got her new digital hearing aids and they are wonderful. I hope she loves them too. Good luck and do not worry. It is not a big deal and the test is well worth it.
Leah

[jelanismom]

many many thanks to everyone, I read and reread your replies and I'm less worried...but it only confirms now that I'm a wimp

Leah, I printed that out thanks again.

Mollysmom, I don't know the difference between Baer and ABR.
anyway, thankyou and goodluck on finding a dentist. Maybe post a thread on this for replies in your area? I remember damarasmom had a great experience when she took damara, and the pics are so cute...I might go find that and post it.


Leah...digital hearing aids...wow, I'll check into those. i can't imagine how pricey those are, and hoping his insurance covers them. Did your daughter ever chew on them? eeek.
I know I'm in store for him to get used to these things on his ears...hoping it's easier because he already wears cable temples on his glasses, so he's used to that "feeling".

I even heard his teeth grinding may actually stop if he's wearing hearing aids...what a cool concept. I guess it may provide the sensory input he's in need of...by actually "hearing" well enough for a change!

[kellyd]

Hi Dawn,

I don't post very often but your son's case is very similar to my daughter's. Talia has a severe hearing loss and wears two hearing aids. We live over seas and the doctors sedated her using a very strong cold medicine which knocked her out long enough for her ABR. She has been wearing her aids since she was three years old and it was a big struggle to get her to wear them. It literally took her a year to get fully used to them but now she is a real pro at fixing them her self when she gets feedback. She only pulls them out of her ears when she is angry at us.

I purchased these clips that attaches to her clothes called EarGears they are based out of Vancouver. They are the best things as they are very strong and it helps her from not losing them.

Unfortunately, she is 6 and she hasn't said one word yet so I am praying that one day something will spurt out of her mouth.

She also grinds her teeth a lot during the day but sorry to say that the hearing aids has not helped us in that department

I am going to ask the doctor about getting digital and perhaps more powerful hearing aids for her.

Good luck with the test and I wouldn't be too worried about the sedation.

Kelly

[lespring]

The ABR (Auditory Brain Response) and the BAER (Brain Auditory Evoked Response.) are basically the same exact test...just different names.

Electrodes are placed around the head, and sound conductors in the ears. When sounds are made in the ears the test measures brain waves in response to sound. When there is a loss measured, then a sound conductor is placed on the mastoid bone instead (the big bone on the side of your head, right behind your ears) to see if the brain then reads the sound differently. If it does, you know there is a conductive loss. If it's the same you know it's a sensoryneural loss (damage to the auditory nerve.)