sedated abr testing reliable?

various blood tests, muscle biopsies..more MRIs...
they seem a bit invasive to me, anyways. :hmm:

Why would all that be necessary? I can see having blood testing to rule out genetic causes or a syndrome that may be in play. Also, MRI's may be indicated, but, muscle biopsies? :shock:

What on Earth for? Can you elaborate?
 
to see if there are other causes for his delays...like mitochondrial disease, and all kinds of other extremely remote possibilities..seriously, there have been some off the wall suggestions at what could be wrong with my little one but no..i wont be going to these extremes. i mean..will it really change anything? of course not. and besides, i know he doesnt have some elusive and rare disorder. they already suggested another MRI when the other one was done at a very reputable hospital and it was clear..one thing i have learned with this whole mess is that there ARE doctors out there that will order more tests purely to cash in somehow, or maybe they like tests? i dont know, but i can say that a lot of these tests are horribly unnecessary.
they were discussing at one point, putting a camera down his little throat, and possibly a colonoscopy, to see why he wont eat. i dont think so.
 
i belong to a group on facebook for parents of kids with certain issues, and there is a woman on there who has had that done to her child 3 times with 3 different drs, because she just wasn't convinced that her child didn't have this mitochondrial disease. i was shocked that it was allowed to be carried that far. it seems that some doctors are more than happy to oblige parents in their quest for a diagnosis, and damn the costs to the poor child going through it all.
 
It does sound pretty rough what the little guy is having to go through, but IF you can find out what's causing his inability to eat, and there's a treatment, it may make him so much happier than if you just let it be. I can understand why you might want to do further testing, with that in mind. Perhaps it hurts him to eat -- I know I'd probably try to find the cause if my child stopped or never started eating solid foods. Sending hugs to you both.
 
to see if there are other causes for his delays...like mitochondrial disease, and all kinds of other extremely remote possibilities..seriously, there have been some off the wall suggestions at what could be wrong with my little one but no..i wont be going to these extremes. i mean..will it really change anything? of course not. and besides, i know he doesnt have some elusive and rare disorder. they already suggested another MRI when the other one was done at a very reputable hospital and it was clear..one thing i have learned with this whole mess is that there ARE doctors out there that will order more tests purely to cash in somehow, or maybe they like tests? i dont know, but i can say that a lot of these tests are horribly unnecessary.
they were discussing at one point, putting a camera down his little throat, and possibly a colonoscopy, to see why he wont eat. i dont think so.

It's not so much to cash in, I don't think. It's more to cover their own butts in case the child does have some sort of rare mito disease. If your baby does have something like that, you could possibly sue if it wasn't caught, so therefore, these Dr's want to cover every base. Dot every I. Cross every T to cover THEIR behinds. But, you're right. I don't think all that is necessary.

It MAY become necessary at some point to consider an endoscopy later on if feeding therapy isn't working and you've tried various formulas and what not. But, doing it now would seem premature to me. As I've said, go with your gut on this. You know your little one best.

As for the sedated ABR, I can't speak to it's reliability (I'm hearing), but listen to what is being suggested and if it makes sense to, go with it. If not, toss it to the wind. You don't have to go with what doesn't make sense to you. That's the "take home" message I want you to have. LISTEN to what the professionals have to say, but YOU are the one that ultimately makes the decision on the kind of care your child gets.
 
it wouldve seemed that way, if i hadnt gotten him to eat several BITES of cookie dough the other day...the little man just doesnt like the way it feels! he loves the taste though. :lol:
some days, he will try new stuff..other days? nope. he is almost back to 30 pounds too, so i feel pretty good about my conclusion..now, if he were losing weight..i would definitely consider it. but they are just throwing everything out there and its almost as if they are just checking to see what sticks.
 
Yowza.

Have you been to an audi?

Personally, I love mine. She's a fantastic lady. She makes my new earmolds when I need new ones. She repairs my tubing when needed.

BUT ! They are indeed biased. They need to make money in order to keep their office open. They will push for certain products. They don't necessarily have the parents' (or child, for that matter) best interests in mind. Earmolds don't make them money. Tubing replacement doesn't make them money. Certain HAs and CIs do. I'm 100% positive that the HAs I have are based solely off what manufacturers they work with, and not necessarily what are the BEST HAs for me. I'm already wanting to change them. (This is not necessarily just MY personal opinion. Many of us deafies here have said the same.)

So until you visit an audi, I'm not so sure you should be telling someone an audi's input is of value.

Yep. ALDs (assistive listening devices), for the most part, don't make them money either. There are lots of inexpensive products that can be very helpful that most HoH folks don't learn about from their audis -- like vibrating alarm clocks, flashers for the phone/tt, and strategically placed mirrors. Over sized side and rear-view mirrors aren't just for trucks and cars -- they work great in offices too.
 
i asked her about buying stuff to clean the ear molds with, because i have been using rubbing alcohol so far, and she didnt try to sell me anything, she just said soap and water, or alcohol is fine. the only thing shes pushing is this nucleus 5 thing..and she had me halfway convinced the other day, i have to admit..she told me shes going to turn his hearing aids up when his new ear molds come in, and that i should reconsider..they are good at laying on the guilt!
 
Peroxide is also good for cleaning them. It's actually the only thing I use. I put them into a drinking glass with peroxide and let the bubbles do their magic for a few hours.
 
well? I have a dry and clean kit that can be used to clean my earmold.
maybe you can probably order one online :)
the audi pushing for the N5? if you don't like it, find another audi.
 
i never thought of using peroxide..that is a very good idea! i had no idea his little ears could be so gross. it took us forever to figure out how to get the earmold off..we didnt know they unscrewed so i took it off the tube..luckily it went back together!
 
to see if there are other causes for his delays...like mitochondrial disease, and all kinds of other extremely remote possibilities..seriously, there have been some off the wall suggestions at what could be wrong with my little one but no..i wont be going to these extremes. i mean..will it really change anything? of course not. and besides, i know he doesnt have some elusive and rare disorder. they already suggested another MRI when the other one was done at a very reputable hospital and it was clear..one thing i have learned with this whole mess is that there ARE doctors out there that will order more tests purely to cash in somehow, or maybe they like tests? i dont know, but i can say that a lot of these tests are horribly unnecessary.
they were discussing at one point, putting a camera down his little throat, and possibly a colonoscopy, to see why he wont eat. i dont think so.

frankiesmom, I think it's b/c kids who have unusual nereological manifesations, may be more likely to have something odd. So they don't want to miss anything. One thing that you SHOULD urge when he has the genetic testing, is a complete karotype work up. It's possible he may have a mild chromosome abornality, and that is why he is so "off" nereologically. Maybe urge them to do complete testing and see whats there. It's good that the MRI was clear....that means nothing like hydrancenephaly, or agneis of the corpus collssum or any other weird brain malformations showed up.
 
oh yes, i am asking for that next week, when we go. if it comes up negative..well, i guess he is who he is. BUT...hes doing something...today, for the first time..he really noticed tv..and he didnt even have his hearing aids on..i was floored. he also has been following his sister around going "ahh!!! AHHH!!!", which is big. he simply might just be slow to develop, or maybe, even though i have disagreed with it this whole time...his hearing loss has played a bigger part in some of his delays after all. it wouldnt explain the loss of fine motor skills, not being able to smile/frown, but still..little things here and there are awesome! and oh yes, i was thrilled that his mri was clear..that couldve been awful.
 
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.

Hahahahahahah yeah.... You could say he has complex unknown nereological issues. He does sound "obviously" nereological/ unusual syndrome kid, but autism.....god...and you don't think he has autism right? I think it's that he may have some overlap in his symptoms with autism, as a lot of kids with complex nereo issues do. (ie speech delay) but it doesn't sound like autism.
 
no, i dont think he has anything remotely close to autism. it just seems like EVERYONE is "on the spectrum" these days, and its a slap in the face of those who really are autistic.
 
no, i dont think he has anything remotely close to autism. it just seems like EVERYONE is "on the spectrum" these days, and its a slap in the face of those who really are autistic.

I think people think nereological disorder, and they automaticly think autism...
 
Gonna address the original question first: ABR testing, while relatively reliable, is also very limited in the information it provides, and cannot, in any way, be related to actual function. Sedated or unsedated, the only thing that ABR can tell you is at what dB level and at what Hz the brain is automatically responding to auditory stimuli. Fortunately, there is much more involved in processing that stimuli than what can be shown on an ABR. Simpy determining the levels required to get response in the brain does not tell us how that stimuli is processed, how meaningful that stimuli is to the receiver, whether that individual will actually be able to make use of that stimuli, or how well they will be able to make use of that stimuli. For instance, an ABR can tell us that a child does not respond until 90 dB, and at Hz well below the speech banana. However, it does not account for the great numbers of individuals that show audiograms identical to this that are able to make use enough of residual hearing with HAs to actually perceive and discriminate speech sounds into meaningful stimuli. The same can be said for the many that would show levels in the moderate range with some perception in the speech banana that are unable to make use of that residual hearing for speech purposes at all. This is because there is so much more involved than the brain simply receiving stimuli. So while the ABR may be considered reliable, it is not predictive of future functioning, nor is it valid for determining such. The results are very, very limited in usefulness.

Re: the implications that your child may be suffering from autism: I doubt it very, very seriously. I have seen in the many photos I have looked at that Frankie does not avoid eye contact; a hallmark behavior seen in children who fall on the autistic spectrum. Neither does he avoid being touched, and according to your most recent post of him following his sister around and vocalizing, does he shun social contact. If he appeared, early on, to be difficult to engage, it was more likely due to his attention not being attracted by sounds. Now that he has been wearing his HAs, and according to your reports, he is engaged much more easily. That would not be so if he were autistic.

Re: his objections to solid foods and the suggestion that eating might be causing him pain. You are the mother of several children, and I would suggest that if any of your children were experiencing physical pain, you would be the first to be aware of it. In fact, you would no doubt be the one to inform the professionals that your child was in pain. What you describes sounds much more like a tactile aversion.

As always, I look forward to hearing about the little guy's progress.:wave:
 
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