sedated abr testing reliable?

[frankiesmom]

They ARE reliable, arent they?
someone on my facebook suggested that Frankie might not be deaf, that he could have sensory processing disorder..She is not the only one who has said that either..Usually it ends up with an armchair doctor saying my son has autism.
That aside, it looks like Frankies hearing aids have to be turned up..She isnt getting the responses she wanted in the sound booth, but she thinks it is from his delays, but wants to be sure.

 

[Beach girl]

I would trust your doctor more than a bunch of people on Facebook. Or even here on AD!

That said, sometimes you can get interesting ideas and different interpretations from people. It's always worth asking your doctor if someone says something to you that upon consideration, you think might have some truth in it.

Doctors are human; they make mistakes, they overlook things, they get fixated themselves sometimes and don't make a leap to consider other diagnoses.

Since you posted the question here, there must be a grain of doubt in your mind about the testing. Just for your own peace of mind, it's worth bringing it up and asking your doctor (or audi, whoever is appropriate) about it, just to clarify.

 

[Oceanbreeze]

I would trust your doctor more than a bunch of people on Facebook. Or even here on AD!

That said, sometimes you can get interesting ideas and different interpretations from people. It's always worth asking your doctor if someone says something to you that upon consideration, you think might have some truth in it.

Doctors are human; they make mistakes, they overlook things, they get fixated themselves sometimes and don't make a leap to consider other diagnoses.

Since you posted the question here, there must be a grain of doubt in your mind about the testing. Just for your own peace of mind, it's worth bringing it up and asking your doctor (or audi, whoever is appropriate) about it, just to clarify.

Just to expand on what BG said (and btw, I agree with her), IT IS possible that Frankie may have a sensory processing disorder, along WITH hearing loss. In order to sort this all out, you will need to rely on professionals. Going by what lay people say is rather silly. We could all be right on the mark or way wrong. I would suggest that you listen to the professionals. Do your research, and, follow your "Mommy gut instinct". A mother knows when something isn't quite right with her child, and, a Mommy knows what is right for her child even when the professionals give their advice.

 

[frankiesmom]

oh i mean..i KNOW he has hearing stuff going on..but i didnt want to pop off about a test being the gold standard of testing or whatever, and then find out its not that reliable. its ok though..i had someone ask me for the second time this week.. "cant or wont?"


sooo rude...like the guy at the convenience store who was gawking at his hearing aids..and asking if they were hearing aids and then asking "so have you thought about the implant yet?"

I love these tube riders but oh man, i have had 80 thousand people asking if his little firetrucks/turtles are the hearing aid, followed up with an autism/implant remark..
:roll:

 

[ash345]

don't you just love the audists that think the only way of communication is speech? people like that make me mad...

there is no way to be 100% sure that it is 100% reliable... you know he has hearing issues, and you know the HA's are helping... that is what is important. you are also trying to get communication in through speech AND ASL, and that is what is the most important. Giving him access to communication. you are a wonderful mom, and you know what is best for little Frankie. I would love to meet him... and you... I am already in love with the little guy.

 

[frankiesmom]

hes a sweet pea! but oh my god, everyone is on with the autistic thing..seriously, that has got to be the latest diagnosis, much like the adhd thing from the 90s.

 

[CSign]

I would say a sedated ABR is more reliable than not sedated. As he gets older, there will be other tests they can use. The tests are all relative, and give you a sense of where he's at.

If he is not responding to sound with his HA's it could be for various reasons.
1) his hearing loss is so profound HA's don't benefit him (Not necessarily your son, I don't know the degree of loss)
2) since he recently got them, perhaps he hasn't figured out what these sounds are... Doesn't know or understand yet to respond to sound...
3) Auditory neuropathy where access to sound is intermittent and lies within the brain rather than the cochlea etc. Much more to AN than that though...

I'd say trust your audiologist, and know that there are different tests that can measure hearing loss.

 

[CSign]

oh i mean..i KNOW he has hearing stuff going on..but i didnt want to pop off about a test being the gold standard of testing or whatever, and then find out its not that reliable. its ok though..i had someone ask me for the second time this week.. "cant or wont?"


sooo rude...like the guy at the convenience store who was gawking at his hearing aids..and asking if they were hearing aids and then asking "so have you thought about the implant yet?"

I love these tube riders but oh man, i have had 80 thousand people asking if his little firetrucks/turtles are the hearing aid, followed up with an autism/implant remark..
:roll:

Most people who ask if you've considered the implant know little to nothing about deafness. It's an opportunity to educate them... They are not trying to insult you... They are curious and need information. You can educate them or not...

 

[ash345]

hes a sweet pea! but oh my god, everyone is on with the autistic thing..seriously, that has got to be the latest diagnosis, much like the adhd thing from the 90s.

oh yeah... it really is the new catch all thing... so many people think that any child that isn't speaking yet must be autistic... or any child that doesn't respond to auditory commands must be autistic... there are so many adults out there that had been given Ritalin as a child and are finding out they really don't have ADHD...

 

[ash345]

I would say a sedated ABR is more reliable than not sedated. As he gets older, there will be other tests they can use. The tests are all relative, and give you a sense of where he's at.

If he is not responding to sound with his HA's it could be for various reasons.
1) his hearing loss is so profound HA's don't benefit him (Not necessarily your son, I don't know the degree of loss)
2) since he recently got them, perhaps he hasn't figured out what these sounds are... Doesn't know or understand yet to respond to sound...
3) Auditory neuropathy where access to sound is intermittent and lies within the brain rather than the cochlea etc. Much more to AN than that though...

I'd say trust your audiologist, and know that there are different tests that can measure hearing loss.

I think he is responding sometimes to noise though... he prob just doesn't understand what it is quite yet. She said he is also babbling a lot more, which is a good sign that they are giving him a bit more access to sound than he had before.

 

[frankiesmom]

oh he is very responsive..lately i have noticed A LOT more stuff he is noticing himself. I think its just going to take time.
as for educating people....that is true, but i think its incredibly rude to just start questioning people like that. i would never go up to some guy with one arm and grill him on how it happened, and then ask if he had considered a hook arm yet.

 

[Oceanbreeze]

hes a sweet pea! but oh my god, everyone is on with the autistic thing..seriously, that has got to be the latest diagnosis, much like the adhd thing from the 90s.

Isn't he a bit young for them to be able to determine if he is on the autism spectrum or not?

I don't know if it's the latest "thing". I do believe the diagnosis is still rather infrequently made, but I also wouldn't call it a rare diagnosis, either.

At his current age, I would question that diagnosis if it's made. Granted, I believe that the earlier you intervene on it; the better it would be for him IF he is autistic, but to label him erroneously could do great harm.

 

[Beach girl]

How would it do harm, really? If a child is autistic, aren't the usual therapies involved with communication methods and getting him to connect with people and so on?

None of that would be harmful to a child who is NOT autistic, far as I know, and might even be fun games for him.

 

[Oceanbreeze]

oh yeah... it really is the new catch all thing... so many people think that any child that isn't speaking yet must be autistic... or any child that doesn't respond to auditory commands must be autistic... there are so many adults out there that had been given Ritalin as a child and are finding out they really don't have ADHD...

Yeah, true. However, a 14 mos old is just beginning to put syllables into words. They are BARELY talking at that age, so to label a kid who babbles, but doesn't form words yet, as autistic is outrageous.

How many 14 mos olds do you can speak well? Not many. They are still in the "
Let me point at the kitty, because it's easier to get across that's what I want than try to say it" stage.

 

[Beach girl]

If I'm remembering this right, there were other behaviors that sounded somewhat autistic; it wasn't just the speech issue.

 

[Oceanbreeze]

How would it do harm, really? If a child is autistic, aren't the usual therapies involved with communication methods and getting him to connect with people and so on?

None of that would be harmful to a child who is NOT autistic, far as I know, and might even be fun games for him.

I'm more referring to labels than anything. We have a love affair with placing labels on everything. If a kid is misdiagnosed with autism, that could do harm to that child; especially as he grows older. Autism is not something someone grows out of.

I just believe that to get an accurate diagnosis of autism, a child may have to be a little older than Frankie is. Say, 2 yrs old vs 14 mos. We would expect a 2 yrs old to be able to form words at that point and be able to fully interact with his/her surroundings. But, if you have a child like Frankie who has both a hearing loss AND possibility an autism spectrum disorder, that throws an entirely different kink in the works!

 

[Oceanbreeze]

If I'm remembering this right, there were other behaviors that sounded somewhat autistic; it wasn't just the speech issue.

And, there is a myriad of things that goes into the diagnosis that is more than just speech as well.

 

[Banjo]

Isn't he a bit young for them to be able to determine if he is on the autism spectrum or not?

I don't know if it's the latest "thing". I do believe the diagnosis is still rather infrequently made, but I also wouldn't call it a rare diagnosis, either.

At his current age, I would question that diagnosis if it's made. Granted, I believe that the earlier you intervene on it; the better it would be for him IF he is autistic, but to label him erroneously could do great harm.

Yes, it is too early to determine if he is on the autism spectrum. You're right, it's not wise for people to put a label on it at such a young age.

 

[frankiesmom]

personally, i think all of us are a little..autistic at times, right?
and yes, he is FAR too young for all of that..he has way more symptoms of a fetal alcohol syndrome baby, which he is definitely not. i am really hoping to find out the answer to all of this, but reaching for the diagnosis de jour is not my style.
personally, i am starting to think that this is just one of those unfortunate things that happen..after the genetic testing and neurological testing, i am done. He is physically healthy, happy and learning, just at a very slow rate, so putting him through more testing that is progressively more invasive will probably do more harm than good.

 

[CSign]

personally, i think all of us are a little..autistic at times, right?
and yes, he is FAR too young for all of that..he has way more symptoms of a fetal alcohol syndrome baby, which he is definitely not. i am really hoping to find out the answer to all of this, but reaching for the diagnosis de jour is not my style.
personally, i am starting to think that this is just one of those unfortunate things that happen..after the genetic testing and neurological testing, i am done. He is physically healthy, happy and learning, just at a very slow rate, so putting him through more testing that is progressively more invasive will probably do more harm than good.

What kind of invasive testing are you referring to?