Which specialist for misophonia?
April 8, 2010 4:18 PM Subscribe
What kind of doctor do I need for my son? I think he may have selective sound sensitivity syndrome or misophonia, but I don't know where to start.
Several months ago my son began to complain about chewing noises at dinner, and it's steadily grown worse -- to the point where he can't tolerate eating with other people without loud music or background noise. After researching it, I've decided that his symptoms are consistent with selective sound sensitivity disorder or misophonia, but these are rare (or unrecognized) diagnoses. I'm not sure whether I should take him to an audiologist, a psychologist, or his pediatrician (though the last seems a waste of time).
I've seen the handful of other posts that refer to 4S or misophonia, but I'd like to know if anyone can offer advice (or share an experience) on engaging with a certain type of specialist for pediatric care of these conditions. Thanks.
Several months ago my son began to complain about chewing noises at dinner, and it's steadily grown worse -- to the point where he can't tolerate eating with other people without loud music or background noise. After researching it, I've decided that his symptoms are consistent with selective sound sensitivity disorder or misophonia, but these are rare (or unrecognized) diagnoses. I'm not sure whether I should take him to an audiologist, a psychologist, or his pediatrician (though the last seems a waste of time).
I've seen the handful of other posts that refer to 4S or misophonia, but I'd like to know if anyone can offer advice (or share an experience) on engaging with a certain type of specialist for pediatric care of these conditions. Thanks.
I know someone who can't stand chewing noises at dinner. He was diagnosed with OCD a few years ago. Recently, he got put on some sort of anxiety medicine (he's in his early 50s) and said it changed everything.
posted by aniola at 4:41 PM on April 8, 2010
posted by aniola at 4:41 PM on April 8, 2010
I wouldn't be in such a rush to lock in a diagnosis. You're not a doctor, it could be many things, even perhaps nothing (kids, after all, being delightfully weird). See your GP or pediatrician (or ask your gp for a referral to one), and let them decide what's up with your son.
posted by smoke at 4:55 PM on April 8, 2010
posted by smoke at 4:55 PM on April 8, 2010
Take your kid to his pediatrician, who I would expect would see a problem with his ear and know of a few potential neurological problems that could be causing it. If that fails, a neurologist would be my idea, but IANY doctor or insurance company. I seriously think the best thing to do is to see a GP or pediatrician, to act as the gatekeeper who will lead you to the right specialist. Schedule the appointment, and try not to worry too much.
posted by mccarty.tim at 5:07 PM on April 8, 2010
posted by mccarty.tim at 5:07 PM on April 8, 2010
THANK YOU for asking this. I have the same problem and was not aware of the 4S site. There are many helpful suggestions there. I hope you find one that works for your son. I was also blessed with an understanding family that has made it more bearable.
posted by Katravax at 5:40 PM on April 8, 2010
posted by Katravax at 5:40 PM on April 8, 2010
I'd start with your GP/pediatrician and perhaps an audiologist, but honestly ask yourself what it is that you and your son hope to achieve or gain with this evaluation. Do you want him labeled with these conditions when there may be no medical intervention for them or even any formal test to make the diagnosis in the first place? Is this bothersome enough that you would even consider trying the variants of Exposure Therapy/CBT that some people try?
I would gently submit that it would be more helpful to approach your concerns with healthcare providers at least initially in the context of making sure this is not a sign of something serious or life threatening. Not to be alarmist, but even though your pediatrician may not be a world expert on 4S, skipping them to see an audiologist or psychologist instead sounds like a great way to miss or delay the diagnosis of a brain tumor for example.
posted by drpynchon at 5:45 PM on April 8, 2010
I would gently submit that it would be more helpful to approach your concerns with healthcare providers at least initially in the context of making sure this is not a sign of something serious or life threatening. Not to be alarmist, but even though your pediatrician may not be a world expert on 4S, skipping them to see an audiologist or psychologist instead sounds like a great way to miss or delay the diagnosis of a brain tumor for example.
posted by drpynchon at 5:45 PM on April 8, 2010
If your son's problem started in the immediate aftermath of a bad sore throat or upper respiratory infection, I think you should consider the possibility of PANDAS:
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.
This diagnosis is used to describe a set of children who have a rapid onset of obsessive-compulsive disorder (OCD) and/or tic disorders such as Tourette syndrome (TS), following group A beta-hemolytic streptococcal (GABHS) infections such as "strep throat" and scarlet fever.[1] The proposed link between infection and these disorders is an autoimmune reaction, where antibodies produced by the infection interfere with neuronal cells.[2]
PANDAS is quite controversial as well, but I think the Wikipedia article I've linked is pretty balanced.
The New York Times had a nice little account of it in the form of a question and answer session by a couple of doctors from Yale who on the whole seem more skeptical about it than not:
Can Strep Throat Lead to Behavior Problems?
...These more narrowly defined Pandas cases appear to have an abrupt sudden onset, over the course of two days or less, and are marked by separation anxiety and obsessive-compulsive symptoms, a loss of writing skills and sleep problems. Tics are often present, but they can also confuse the picture, especially if they had been present in some form prior to Pandas onset....
I doubt you will get anywhere with the average doctor if you come in talking about this, so I would try to find an MD you know to have an open mind if you want to explore it.
I find the case for it compelling, but then, I'm a veteran of chronic childhood strep infections who didn't learn to read or write until I was almost 9, who cannot draw, whose handwriting is so bad two teachers in my elementary school accused me of faking it, whose mother had heart damage from scarlet fever, and who cannot tolerate the sound of chewing from a person I love more than life itself.
posted by jamjam at 9:25 PM on April 8, 2010
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.
This diagnosis is used to describe a set of children who have a rapid onset of obsessive-compulsive disorder (OCD) and/or tic disorders such as Tourette syndrome (TS), following group A beta-hemolytic streptococcal (GABHS) infections such as "strep throat" and scarlet fever.[1] The proposed link between infection and these disorders is an autoimmune reaction, where antibodies produced by the infection interfere with neuronal cells.[2]
PANDAS is quite controversial as well, but I think the Wikipedia article I've linked is pretty balanced.
The New York Times had a nice little account of it in the form of a question and answer session by a couple of doctors from Yale who on the whole seem more skeptical about it than not:
Can Strep Throat Lead to Behavior Problems?
...These more narrowly defined Pandas cases appear to have an abrupt sudden onset, over the course of two days or less, and are marked by separation anxiety and obsessive-compulsive symptoms, a loss of writing skills and sleep problems. Tics are often present, but they can also confuse the picture, especially if they had been present in some form prior to Pandas onset....
I doubt you will get anywhere with the average doctor if you come in talking about this, so I would try to find an MD you know to have an open mind if you want to explore it.
I find the case for it compelling, but then, I'm a veteran of chronic childhood strep infections who didn't learn to read or write until I was almost 9, who cannot draw, whose handwriting is so bad two teachers in my elementary school accused me of faking it, whose mother had heart damage from scarlet fever, and who cannot tolerate the sound of chewing from a person I love more than life itself.
posted by jamjam at 9:25 PM on April 8, 2010
Huh. This isn't likely to be terribly conciliatory, but depending on your son's age, my story may provide some useful input. For my entire life (i'm now 34), I've had the same repulsed/tormented/must-escape reaction as your son to eating noises or any sort of mouth sounds. Add to that the sounds of typing, or any type of soft click-clacking on the latest ubiquitous mobile gadgets, as well as the equally ubiquitous tinny overspill of too-loud headphones, gum chewing, repetitive bass sounds and a variety of other extraordinarily typical everyday sounds that somehow don't seem to drive other people completely insane. For no explainable reason I have always picked up certain sounds like a laser into my brain and absolutely cannot tune them out, ignore them, or tolerate them the way everyone else seems to. This obviously causes some social problems as one cannot gracefully escape the influx of such very ordinary sounds as coworkers typing at work, nor can you appear reasonable and sane whilst asking someone to stop chewing right this very second, preferably before your head explodes.
Much like your son, I was tormented by eating sounds at the table when I was growing up. When I was very young, I remember plugging my ears, pleading to leave the table, begging to be allowed to eat in another room alone, or angrily asking why everyone was eating so loudly (though I've come to see that all of my family are comparatively very polite, closed-mouth munchers). My family's reaction was general bemusement, then anger and eating with exaggerated loudness so as to tease and toughen me up, I suppose. (Pssst: it didn't work.)
On the occasions before I learned to micro-manage my reactions, or whenever I've tried to explain it or ask Person X to stop making X sound, the universal reaction has been that I'm a big massive jerk/control freak for flipping out at such commonplace sounds, and that I apparently have some serious mental issues that I need to get over PRONTO. I've learned to live with this issue by A) living in Manhattan where I couldn't hear a jackal tearing apart a wild antelope in any restaurant over the general din, B) never, ever mentioning this to anyone, aside from this here delightful public Metafilter litany, C) cramming earphones or earplugs deep, deep into my head at work (yes, that causes problems in and of itself, particularly with bosses who expect you to be auditorally available at all times), and finally, D) the old grind-my-teeth-to-nubs-and-get-away-as-soon-and-as-gracefully-as-possible when all of the above have failed me. Not fun, but semi-functional.
As far as some sort of medical Go-To Guy on this one, I'm afraid you're extraordinarily unlikely to find anyone in either the medical or mental health community who has the slightest, minutest inkling what you're talking about, let alone how to fix or address this. Over the years, I've described this issue to numerous doctors, including an audiologist at the apparently prestigious Cleveland Clinic, two psychologists, and two psychiatrists (though it was never the primary reason for my visits). It's categorically dismissed and considered just my own little personal problem or, more kindly, as a simple quirk: medically nothing to worry about, certainly nothing to be done about it physically. My shrink finds it interesting and is sympathetic but ultimately seems completely unsure what's going on there and simply encourages coping as I've always done.
I'd never heard of misophonia before today, but came across a few Soft Sound Sensitivity sites over the years, and that's been as good as it gets: knowing I'm not the only one who reacts to certain sounds this way.
Regarding my fellow AskMeFiers' input so far, I can tell you definitively that I don't have OCD, I'm not autistic (or I'm so far over on the 'normal' side of the spectrum that it's flown under the radar and testing of all the docs and shrinks I've listed above), and have never had a strep infection. I've had my ears and hearing tested several times in throughout my life, and no one's ever found a problem, either physically, or mentally in terms of mega-control issues or weird pathology or the like.
posted by involution at 12:07 AM on April 9, 2010 [5 favorites]
Much like your son, I was tormented by eating sounds at the table when I was growing up. When I was very young, I remember plugging my ears, pleading to leave the table, begging to be allowed to eat in another room alone, or angrily asking why everyone was eating so loudly (though I've come to see that all of my family are comparatively very polite, closed-mouth munchers). My family's reaction was general bemusement, then anger and eating with exaggerated loudness so as to tease and toughen me up, I suppose. (Pssst: it didn't work.)
On the occasions before I learned to micro-manage my reactions, or whenever I've tried to explain it or ask Person X to stop making X sound, the universal reaction has been that I'm a big massive jerk/control freak for flipping out at such commonplace sounds, and that I apparently have some serious mental issues that I need to get over PRONTO. I've learned to live with this issue by A) living in Manhattan where I couldn't hear a jackal tearing apart a wild antelope in any restaurant over the general din, B) never, ever mentioning this to anyone, aside from this here delightful public Metafilter litany, C) cramming earphones or earplugs deep, deep into my head at work (yes, that causes problems in and of itself, particularly with bosses who expect you to be auditorally available at all times), and finally, D) the old grind-my-teeth-to-nubs-and-get-away-as-soon-and-as-gracefully-as-possible when all of the above have failed me. Not fun, but semi-functional.
As far as some sort of medical Go-To Guy on this one, I'm afraid you're extraordinarily unlikely to find anyone in either the medical or mental health community who has the slightest, minutest inkling what you're talking about, let alone how to fix or address this. Over the years, I've described this issue to numerous doctors, including an audiologist at the apparently prestigious Cleveland Clinic, two psychologists, and two psychiatrists (though it was never the primary reason for my visits). It's categorically dismissed and considered just my own little personal problem or, more kindly, as a simple quirk: medically nothing to worry about, certainly nothing to be done about it physically. My shrink finds it interesting and is sympathetic but ultimately seems completely unsure what's going on there and simply encourages coping as I've always done.
I'd never heard of misophonia before today, but came across a few Soft Sound Sensitivity sites over the years, and that's been as good as it gets: knowing I'm not the only one who reacts to certain sounds this way.
Regarding my fellow AskMeFiers' input so far, I can tell you definitively that I don't have OCD, I'm not autistic (or I'm so far over on the 'normal' side of the spectrum that it's flown under the radar and testing of all the docs and shrinks I've listed above), and have never had a strep infection. I've had my ears and hearing tested several times in throughout my life, and no one's ever found a problem, either physically, or mentally in terms of mega-control issues or weird pathology or the like.
posted by involution at 12:07 AM on April 9, 2010 [5 favorites]
Response by poster: Wow. Mefi never ceases to amaze me. Thanks to all who responded. Special thanks to jamjam for all the info on yet another condition I've never heard of (though I can rule out a strep connection in this case). My heart goes out to Katravax and involution. Though I don't personally experience this problem, I acutely feel my son's pain and have some inkling of how hard this makes everyday life for you.
It may be worth mentioning that the person who coined the term "misophonia" (Pawel Jastreboff, a professor at Emory University School of Medicine in Atlanta), claims to have some kind of a treatment strategy, but I haven't been successful finding many details. If you're interested, searching on "Jastreboff misophonia" turns up some places to start.
I think that for now, I'll start with the pediatrician to try and get some help for my son. It looks like it could be the beginning of a long journey. Thanks again, all.
posted by Shoggoth at 4:47 AM on April 9, 2010
It may be worth mentioning that the person who coined the term "misophonia" (Pawel Jastreboff, a professor at Emory University School of Medicine in Atlanta), claims to have some kind of a treatment strategy, but I haven't been successful finding many details. If you're interested, searching on "Jastreboff misophonia" turns up some places to start.
I think that for now, I'll start with the pediatrician to try and get some help for my son. It looks like it could be the beginning of a long journey. Thanks again, all.
posted by Shoggoth at 4:47 AM on April 9, 2010
IANAD... caveat emptor, etc
My friend's 4-yo son has sensory integration disorder, which isn't exactly what you're dealing with, but similar enough. She says the most beneficial thing has been taking him to a sensory integration therapist every week & practicing the methods at home. She found hers by reaching out to her county social work agency. There is apparently such a thing as auditory integration therapy, which may be helpful for your son.
posted by wowbobwow at 6:32 AM on April 9, 2010
My friend's 4-yo son has sensory integration disorder, which isn't exactly what you're dealing with, but similar enough. She says the most beneficial thing has been taking him to a sensory integration therapist every week & practicing the methods at home. She found hers by reaching out to her county social work agency. There is apparently such a thing as auditory integration therapy, which may be helpful for your son.
posted by wowbobwow at 6:32 AM on April 9, 2010
This thread is closed to new comments.
posted by amyms at 4:24 PM on April 8, 2010