Monday, July 2, 2012

A misophonia update, or I medicated my kid today

(Actually last week, but who's counting? Oh, right. We are. Very carefully.)

We liked this doctor. We had seen him before, years ago, when another doctor told us H might be bipolar. This doctor didn't think she was, and we agreed, and then he dropped our insurance plan and that was that until he showed up on our insurance plan again years later (read: now), just when we were thinking that things with C might need to be kicked up a bit (or A LOT), treatment-wise.

So. We were sitting there in his office, C and P and I, only C wasn't hearing anything because he had his fingers in his ears, because P was talking. He can't risk hearing P talk, you see, because P talking is one of his triggers. H breathing is another one of his triggers, but H wasn't there. Normally C would have ear buds in, listening to music on his phone, but he had broken his phone two days before in a violent misophonia rage during his second-to-last day of summer school, when someone near him was chewing gum.

(That was a bad day, a day when the summer school principal, who is C's vice principal during the regular school year and one of his "safe" people at school who knows what's going on with him, tried to call all of the emergency numbers she had for C but wasn't able to reach any of us. Fortunately I got her message just moments later and was able to rescue C and set measures in place for the next day, his last day of summer school, and that was fraught with angst on all our parts but it worked out okay, only his phone still was broken.)

So P was talking and I was talking and C had his ears plugged tight but mostly the doctor was talking. He had consulted some colleagues on C's case, had thoroughly examined the diagnostic results and our family history and C's symptoms and C's own personal history, and we talked about electrical activity and temporal lobes and people with autism spectrum disorders having rage responses to stimuli, and then he told us there were three different classes of medications that have shown a lot of success in treating stuff like this.

Three. Different. Classes.

Oh, you guys. I wanted to cry. I didn't realize how much hope had completely deserted me until I felt it spark up again. I felt exactly the way I felt when we were told C had Asperger Syndrome: this is a real thing. It has a name. Doctors know about it. And they know how to treat it.

So the doctor told us about the three classes of medications. He told us the one he'd like to start with, and he told us the exact medicine within that class that he'd like to start with, and he told us why (high efficacy, low risk of side effects), and then he stepped back a bit. He told us that he felt confident recommending this course of action, this medication, but that it was entirely up to us. Did we want more diagnostics first? Did we want to wait a bit, do some research on our own on this particular medication?

P and I looked at each other, and we looked at our son, our boy who is almost a man, who was coiled tighter than any spring with his thumbs jammed into his ears, afraid to even look at us because then he'd just KNOW the sounds we were making and then he'd be off in a blind rage, screaming and throwing things and punching walls.

And we both had the same answer: a year ago? Yes. We would want more tests. We would want to research all this before making a decision.

But now? Today? After watching C self-destruct before our eyes for the past year-plus? After all the reasons you've told us why this makes sense for our individual kid? Write the prescription. We'll start it tonight.

I know that whenever a parent announces that she's decided to medicate her child, it opens up a giant can of worms. All sorts of well-meaning people feel qualified to sit in judgement, to lament how many kids are medicated these days, to rail against a society that makes it okay and even desirable to numb oneself out, to render oneself compliant and complacent. So I'm bracing for that, and while I do not at all feel the need to justify P's and my (and C's, because his input was essential) decision to anyone, I'm not sure I can adequately express the degree to which this was NOT a hasty decision. It was an easy decision to make in the end, but it's one we've been going back and forth on for literally YEARS. Since before the misophonia. Since before the Asperger and Tourette diagnoses. If anything, one might argue that we waited too long to medicate him, that he suffered while we dithered. That wouldn't be entirely accurate either, but I can see where someone who didn't know the intimate details of the past 16 years of our lives might think that.

In the end, for me, I had to reach a point where I knew beyond the shadow of a doubt that I was 100% making this decision FOR C. Not for me, to make him easier to parent or to keep my heart from breaking on a daily basis. Not for his teachers and school administrators, to make him easier to handle and less of a disruption in the classroom. Not for the people who don't know us and see him flip out and wonder what's "wrong" with him. For C, because he is miserable. Because he is emotionally broken. Because he has been through so much in his life, and maybe this ONE THING can be fixed, or made easier for HIM to deal with. When I asked him how he felt about trying meds -- and this was before we even knew there WERE meds that could actually help, but I asked him again after Thursday's appointment -- his exact words were, "I will try ANYTHING. Anything to make this stop."

And so that's where we are. The drug we're trying is Trileptal (generic name: oxcarbazepine), an anticonvulsant medication that's most often used to treat epilepsy. C does not have seizures as far as we know, but his EEG shows electrical activity in the brain that is consistent with a seizure type of disorder. (I have no idea whether that's true of all misophonics; it would be interesting to know.) He started on Thursday with a VERY low dose and we are very slowly stepping that up over a period of weeks until we get to the target dose for his body weight. So far he hasn't had any side effects; neither have we seen any improvement with his misophonia. We're continuing with both neurotherapy and with the neurotransmitter support supplement that C takes (a combination of l-theanine, GABA and 5-HTP) so that we can isolate any effect, positive or negative, of the Trileptal. And soon we'll likely be adding cognitive behavioral therapy back into the mix.

If this doesn't work, there are other things we can try, and that is so exciting to me. Because it wouldn't be exaggerating to say that these past few months, I have been in despair. I've been wondering if C will actually be able to make it through high school. I've been wondering if he'll end up dead or in jail. I've been crossing things off the mental list I had prepared for his future: Live in a dorm at college? Scratch that. He could never have a roommate. Live at home but go to regular college classes? Hmm, maybe not. College students chew gum and eat in class. Look what happened in summer school last week. Live at home and do some sort of distance learning program? Maybe, but can he actually get a degree that will help him make a living? For that matter: Have an actual job where he has to work with other people? Who knows?

Maybe, JUST MAYBE, someday soon I can erase those scratch marks and start adding things back to the list.

As for the biggies: Have a conversation with his father? Be in the same room with his sister? Take a car or plane trip with the rest of the family? Eat at the same table as us for holiday dinners or even just daily meals?

I'm not ready to think about those yet. But now I can hope.


  1. Don't feel like you have to defend your choices to ANYONE. You are a loving parent, caring for your child in the best way you know how. There's nothing else to say. I also have a child whose independent adult life is hard to foresee. To me the key is never to look beyond tomorrow--okay, maybe to next week. Wishing all the best to your family.

  2. I hope you're re-entering those checklist items soon.

  3. When you have watched your kid struggle so much and they tell you there is a med that will possibly help, you HAVE to try.
    I hope this can be the beginning of some relief for him.

  4. This is a fantastic, scary, heart-rending, overmwhelmingly-positive but breath-held thing!
    And I'm 100% behind you and your choices. Whatever they may be in regards to this.

    (In other news - I'm epileptic, and I take carbamezepine. I first started many, many moons ago (I was sixteen) and it whacked me out for about a week - don't be surprised if he sleeps. A LOT. Like sleeping-for-England kind of sleep. Also, he may sunburn more easily. And there's a weird thing about grapefruit affecting bloodlevels.) Other than that, any alcoholic beverages will hit him about six-fold (I'm a cheap and giggly date)he may get a few skin thingys on his chest that look like red freckles and there will have to be regular blood levels done to make sure his (this is RARE, B, RARE)liver is okay.
    If there is anything I can do to help, PLEASE let me know.

  5. I'll be hoping very hard with all of you!

  6. As a momma who medicates her son, I have been in similar shoes. Just wanted to add my voice of support. Do what you and yours decide is best for you and yours and screw the rest of us.

  7. Been there. STILL there. I feel for ya, darlin'. I understand. For just this moment, I with I lived in your hot, humid part of the world so we could commiserate. Hugs.

  8. If I can be of any help on the school front, please let me know. You have been struggling for a very long time, and you are doing all the right things. That you speak words like "cognitive behavior therapy" makes my heart sing.

    I know you are frightened and sad right this minute, but I must tell you, long-term prognosis for such things (Aspergers, misophonia, Tourette's, broad executive-function disorder-type behaviors) is excellent for children who a) are exposed to a combination of medication and cognitive behavior therapy and b) have a loving and stable support system.

    Thank you so much for all your work and efforts. It is not over.

  9. This is a blog you must print and save for all those times you have doubt. You and P ave worked so hard these 16 years to give C his best life possible. Your struggles are so much more than those of the average parents who are all up in arms complaining because their kid doesn't get a top award or make the team. I have great hope for C that he will be able to deal with this new treatment and if not, it sounds like he as a great knowledgeable doctor who will suggest other forms of treatment. There is nothing at all wrong with medicating especially if it's done for the right reasons as C will be doing. I hope these next weeks of summer will be better for all of you.
    With love,

  10. Let us know what happens. There are other parents of kids with misophonia out there who also do not know what to do. I am one of these. I hope this works for you, I know how you are suffering.

  11. Wow, thank you all so much! We are sure we've made the right decision but your words of support mean a lot.

  12. I am on trileptal - I don't have misophonia (or at least I wasn't diagnosed with it) but I did have explosive rages. The trileptal has given me my life back. I hope it does the same for your son. BIG HUGS!

  13. I don't know anyone like you Kathy, your commitment to your family, and especially to C, is amazing and I can't imagine anyone having anything to say about it. During the time I've followed your blog I've perceived nothing but LOVE, dedication and positiveness. Never anger or bad feelings. In fact you are always funny and a pleasure to read.
    I admire you, dear Kathy, and I believe you are a great example of good parenting.

  14. Ah Badge, (for you'll always be Badger to me) you have always been the best and most ardent advocate for your kids, and if you think this is what your son needs then this is what he needs...and don't you doubt yourself for one minute.

  15. Badger, I have said it before and I will say it again: you are awesome parents. I know you are shaking your head and saying you are not here to witness it all, but it doesn't matter. The minutes in between do not matter. What matters is that you parent with all your heart and I know you both do that. I could not care less what other people thought of the decisions I make regarding my kids health. Your son needs you to save him from himself and you are listening to someone you have trusted for years. I am so happy that he has the hope of a plan to make this dreadful condition stop so he can go back to living a life. My heart goes out to all of you and three cheers for your doctor switching health plans!!

  16. I can't tell you how much I appeciate you writing your blog. Please keep us updated on how the medication is helping. We also have a child, a daughter, who suffers extremely with misophonia. It is an awful, awful condition and is causing her and the rest of our family so much stress and sadness. We feel so alone dealing with this and are desperate for answers, anything to make her quality of life better!

  17. This sounds so positive. A good doctor makes such a difference. I always feel you can't not medicate for the sake of not medicating, if you know what I mean? My nephew was showing all the signs of ADHD and suffering and falling behind at school, and my ex-brother-in-law resisted medication for a long time through fear of stigma/labelling, which effectively meant that my nephew lived through many of his primary school years thinking he was the worst kid in the grade. And that takes a lot of catching up on, and truth to tell I wonder if he will now, it's so ingrained. So I'm a full supporter of If Your Kid Needs The Meds, You Give Them! My fingers are crossed for you all, it sounds so hellish and some relief would be beyond awesome.

  18. Hi- Im feeling like I am reading about my daughter. She has Dx of OCD, touretts but psych isn't even sure. Meds are not working - my daughter turns into a raging aggressive girl over sounds- my voice, things being put down, closed, any loud breathing. I Think she has misophonia but can't find a dOc to help. We live in Dallas area- if you can recommend anybody anywhere in Texas plea email. I'm happy meds are working for him.

  19. Thanks for sharing your story. My 11 yr old daughter has a severe case of misophonia. Violent rage, breaks things, swears, tells us she hates us 10 to 50 times a day. All because we set down a cup or breathed, or touched a fork to a plate. Its been absolutely devastating to our family. Even at only 11, i feel her slipping away. I can relate to your checklist of normal milestones just being erased. She was a sweet and kind 7 yr old,. Now in 3 to 4 yrs, she isnt even the same person. I pray there are doctors out there right now that are committed to a cure. God bless all of you who live with or care for someone with misophonia.

  20. OMG! People think my 16 year old is just a brat and disrespectful because she goes nutsoid over the littlest sounds. She can hardly stand being in the same house with her grandfather because of his mouth sounds he makes, and he lives with us! It is unbearable!

  21. Sound-Rage. A Primer of the Neurobiology and Psychology of a Little Known Anger Disorder (Chalcedony Press, 210 pgs) has just been published and is available from
    The book provides compelling evidence that it is a developmental, neurological disorder, and presents detailed information on the brain regions implicated in the disorder. Other important areas of research discuss:

    • how the brain’s “hard-wired” circuitry interprets stimuli as pain and affects behavior and emotions
    • how processing of visual and auditory stimuli overlap in the brain and result in creating new triggers
    • how the brain uses mimicry to induce empathy and reduce the distress caused by triggers
    • why the disorder is routinely misdiagnosed as a phobia, Post-Traumatic Stress Disorder, Obsessive-Compulsive Disorder or a sensory processing disorder and how “Sound-Rage” is unique among all disorders
    • why exposure therapy worsens the symptoms while cognitive behavior therapy is highly effective in reducing them

    It presents a current state of knowledge to the public and provides another voice for hope, courage, and resilience. I hope this helps.

  22. I know this is an old post, but I felt I needed to respond. First of all, I am so incredibly sorry your son is going through this. I am a misophonia sufferer as well, and I know first hand the torture he is going through. I too, would do anything to get rid of this, and my heart breaks for any young child who has no choice but to suffer in this manner.

    I am now 31 and a mother of two. I have spent my entire life (since age 12) with this. When I was young, Misophonia didn't even have a name. I was send in for test after test by my parents, but nobody could ever find out what was wrong with me. I was alone, and felt like I just must be crazy. It started when I could no longer stand my sister's breathing sounds when she slept, soon it moved onto encompass my dad's breathing/snoring, and then chewing sounds, and later my teacher's "S" sounds. As I grew older, the roster of sounds expanded. It has never gone away.

    Despite all of this, I found ways to alter my life to make it tolerable. I am hoping me telling you this could help, even in some small way. Even with Misophonia, your son's life can be filled with joy. It just takes a lot of careful planning and understanding on you and your families part.

    1. Move somewhere quiet. Middle of the woods quiet if possible. This is because misophonia often expands to include noises by neighbors and other people nearby. It is of utmost importance he have somewhere to escape with zero noise.

    2. Consider Homeschooling. School is hell for most misophonia sufferers.

    3. Help him feel more in control of his environment, it makes a lot of difference. This means the family needs to be REALLY careful to avoid trigger noises, and if he hears them, let him to be free to communicate that he has heard it, and you immediately say "sorry". Just that acknowledgement is like a soothing balm most times. After he sees the effort from his family to avoid the noises, he will eventually learn to better control his emotional responses to the trigger sound. It can change his response from one of extreme anger and anxiety, to one of controlled response.

    I completely understand why you would want to medicate him (as truly, I too would take any medicine to rid of this) and this is absolutely not a judgement, but to add to your considerations I would like to say this; Because Misophonia has no cure, I think medicating him will only make things worse for him, and I worry about the developmental issues these medications could have on his growing brain. I think the best thing for is to focus helping him:

    1. Fully understand his disorder and how to manage the emotional response he's feeling. He's going to need to develop a lot of emotional maturity to manage the severe responses he experiences. The better he understands how and why he feels the way the he does, the easier it is for him to cope.

    2. Develop skills for a job in which he could work at home as an adult. I am a comic book artist and working at home is a major reason I am able to be happy most days.

    3. Help him feel not alone. There are thousands and thousands of us. He is not alone, and he is not crazy.

    4. Help him curb his feelings of overwhelming guilt. Guilt over having negative reactions is incredibly debilitating. Help him understand that you are not mad and that you understand and just want to help him through this.

    Misophonia is really hard, but manageable with a lot of help and understanding from those around us. I am sure he will be okay with such a loving mother as yourself :) Good luck and all the best to you all.