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 Post subject: Ears - hearing tests?
PostPosted: Tue Feb 10, 2009 1:47 pm 
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Jack had an audiology appt today. We found out his right ear drum is not moving due to fluid, he has never had an ear infection so this was a surprise. He also did not respond to soft sounds, so they need to repeat the sound check after we treat the fluid in his right ear. Then, they also talked about a sleep hearing test, where they conduct a hearing test in the lower ear during sleep. Has anyone done this? This would advoid needing to do it with sedation. Anyhow, if anyone has done this please advise.
thanks.


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 Post subject: Re: Ears - hearing tests?
PostPosted: Tue Feb 10, 2009 3:09 pm 
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We have had the ABR done while our son was asleep. He was an infant though (under 1 year), I am not sure how old your child is. I was able to nurse him and have him fall asleep while the audiologist conducted the test. We have tried to have them done, now that both of my kid are older, during nap time....but it has never worked for us.

Both of my kids have a moderate-severe high frequency sensorineural hearing loss.

How old is your child? If he is a good napper, it is definitely possible.

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I am mom to Waverly (5) & Oliver (2). Both were diagnosed in the spring of 2008 with MPS IIIA.


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 Post subject: Re: Ears - hearing tests?
PostPosted: Tue Feb 10, 2009 3:15 pm 
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Lauren's doctors decided that the hearing loss that she may or may not have had (later they determined she did not) was second to everything else. So they scheduled an ABR during a surgery (when she would already be sedated).

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Alexandra 1/3/98, Isaac 12/12/01, Gabriella 12/27/03, & Lauren 10/14/05 MPS I-H Dx 12/27/06 CBT 5/18/07
(I used to have the older three listed as 'unaffected'... but I know better now. All of our lives are forever changed.)

"You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives." Genisis 50:20


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 Post subject: Re: Ears - hearing tests?
PostPosted: Tue Feb 10, 2009 3:31 pm 
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We tried getting hearing tests done while Elijah was sleeping, but he would wake up and freak out. We've never been successful going to audiologists to have his hearing checked due to him being fearful of people putting things in his ears.
So, we will have a hearing test called a BAER, done this Friday while he is sedated for his yearly check-up. They'll be able to tell if he does have hearing loss & if so, then they will also be able to make the molds for the hearing aids while he is under.

Brooke

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Elijah 10/11/2004 MPS II
Noah 05/18/2007 unaffected
http://www.caringbridge.org/visit/myelijah


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 Post subject: Re: Ears - hearing tests?
PostPosted: Tue Feb 10, 2009 5:36 pm 
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Jack is 17 mths and yes a good napper, however, I can't imagine him napping through this. Well, we will give it a try. I wish we could have it done on Thurs while he is under for medi port, but they felt this would not be able to coordinate with type of surgery. I am beginning to feel the anxiety around the appts/sedations/surgerys...urgh, trying to breath and stay calm but wow this is quite overwhelming.


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 Post subject: Re: Ears - hearing tests?
PostPosted: Tue Feb 10, 2009 6:16 pm 
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As Shannon said my son also had an ABR while under sedation for another procedure. Good luck and keep us posted.

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Our son, Will was diagnosed with Sanfilippo, MPSIIIA in June, 2007. He is 6, born February 10, 2003. His loving older sister Nicole is 9. http://www.miracle4will.com


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 Post subject: Re: Ears - hearing tests?
PostPosted: Wed Feb 11, 2009 9:36 pm 
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Danny has never slept through a hearing test. We always have to knock him out when they do the ABR. We also found Danny's hearing loss at about 15months old. They put him in a sound booth and he responded to NOTHING! So they put tubes in to drain the fluid and then did an ABR in the OR while he was still asleep. He responded better than he did during the sound booth test, but still not normal. So that is when we got his hearing aids. Good Luck! Hope he sleeps like an angel!

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:king2 Danny Hinton :king2
DOB :partyguy2 : 07/16/2002
Hunter Syndrome-MPS 2

http://www.caringbridge.org/visit/dannyhinton


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 Post subject: Re: Ears - hearing tests?
PostPosted: Wed Feb 11, 2009 9:45 pm 
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We also had the ABR under sedation at Duke, no one in Hershey will repeat it here as they tell me they are not equipped to pull that kind of dual testing...He just had his tubes replaced today and then we are going to try a walking ABR? However the whole ear/hearing thing has me perplexed.

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Mom to Matt, 11
Tyler, 3 MPS III A
www.caringbridge.org/visit/tylerlangan


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 Post subject: Re: Ears - hearing tests?
PostPosted: Thu Feb 12, 2009 2:52 pm 
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Trey had an ABR done while under the sedative chloryl hydrate when he was just over 2 years old. He hasn't needed to be sedated for hearing tests since.

brooke wrote:

So, we will have a hearing test called a BAER, done this Friday while he is sedated for his yearly check-up. They'll be able to tell if he does have hearing loss & if so, then they will also be able to make the molds for the hearing aids while he is under.

Brooke


Trey had a BAER done back in Oct/08. I'm not a medical person and I could be wrong, but my understanding of the BAER is that it is not a hearing test. It just tests the connection between the ears and the brain. It does not diagnose hearing loss. The ABR is used to diagnose hearing loss.

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 Post subject: Re: Ears - hearing tests?
PostPosted: Thu Feb 12, 2009 3:04 pm 
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BAER & ABR are the same things. It is the exact same hearing test, just different names. They are used to check the nerve impulses from the ear to the brain. It is also used for infants or young kids, who are unable to participate in a hearing test.

Once a hearing loss has been determined, it will depend on the child as to how the next hearing tests will be conducted.

We did an ABR/BAER for the initial diagnosis of hearing loss and then (as the kids grew up) we moved into the hearing booth. Now that Waverly's is older and she is losing skills, we are back to an ABR once a year, because she is just not able to respond accurately during a hearing test.

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I am mom to Waverly (5) & Oliver (2). Both were diagnosed in the spring of 2008 with MPS IIIA.


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 Post subject: Re: Ears - hearing tests?
PostPosted: Thu Feb 12, 2009 5:36 pm 
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When Jesse was 2 years we ABR under sedation. Since then we ahve done the standard booth testing. Results were mixed with that.

This past year we elected to do an ABR without sedation. We set up the room with dim lighting, I did a DVD with no sound and then gave Jesse melatonin after about 15 minutes in the darkened room. They had a recliner in them for him and he drifted in and out of sleep while I sat next to him to be sure he didn't pull any of the wires off. He did very good for the just over an hour test they did. We got good results and new updated hearing aides this year based on those new tests. :bounce: :bounce:

The doc said based on how well Jesse did with the melatonin, they are now trying this at Kennedy Kreiger with other kids. He said it has been successful in 80% of those tried so far!!

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Love to you all! :kiss:


Patty and Jesse
MPS III A


http://www.caringbridge.org/md/myjesse < click here for Jesse's website


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 Post subject: Re: Ears - hearing tests?
PostPosted: Thu Mar 12, 2009 3:50 pm 
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We have not been able to get a good hearing test on Dani yet. She freaks out in the booths. We are waiting for another procedure to come up and will get it down while she is under. She did get sedated for a vision test so we possible will do both at the same time next time.

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Kelli Boni
:music Gabe 3/30/97 Unaffected
:bug Ethan 11/19/98 Unaffected
:yellowbutterfly Danica 12/6/05 MPS I BMT 11/9/06
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 Post subject: Re: Ears - hearing tests?
PostPosted: Thu Mar 12, 2009 10:41 pm 
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The audiologist was only able to complete 1/3 of the ABR in Jacks left ear today. Jack woke up too soon and was not liking the electrodes on his head. The audiologist decided she would come back next infusion and try for some more. She has been wonderful and patient with Jack and I, thankfully and knows that we are avoiding sedation at all costs unless he were to have another procedure soon(prayers no). So what they did find is that his left ear only has a mild hearing loss, this was the ear with the drainage. They didnt find out the frequency or anything else (conductive or sensori) but they will focus on that ear again next week to complete it. Anyhow, off to bed, going to purchase some melatonin tomorrow and get him started on it this week so on Thursday he will nap, the benadryl wires Jack :bounce:


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 Post subject: Re: Ears - hearing tests?
PostPosted: Fri Mar 13, 2009 11:13 am 
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Melatonin works pretty good for Caleb. Hope they are able to complete the ABR next week!

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:king Caleb Allen (12/06/00)
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