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Misophonia

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liveworkplay

Does anyone have a child with misophonia? (or dealing with it yourself) DD's issues have progressively become worse so that now it is really impacting on her and the families every day life. Trying to get into an OT, let alone one who knows anything about it, is near impossible where I live. The only service who seems like they have half an idea has a long wait list and the public wait list is over 6 months as well. She has sever reactions to eating, breathing, sniffing...all the classic sounds.  As her GP said, she needs t want to be helped but I am not sure if she does. She's 11.

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amdirel

Yep, my almost 15yo. 

Her airpods are our best friend!

Even so, we unfortunately struggle to eat together as a family if it's crunchy food. So we have to spread out a bit and she turns her airpods up.

If we're snacking on something crunchy we need to sit in another room.

If DS1's hayfever is bad, I suggest an antihistamine lol. 

She once tried a yoga class to see if it would help her anxiety. She'll never do that again lol. 

So basically avoidance of her triggers is how we deal with it.

Probably not ideal but I'm not sure there's much else we can do.

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DQMission

I have it and have had it since childhood. My siblings do as well. We all suffer pretty badly. I havent been able to sit with my kids for dinner for years (I can do it at venues as the ambient noise helps me not focus on the sounds that cause distress). Eating sounds send me off the deep end. There is no ability to reason there. It triggers fight or flight in me. I cannot eat in front of others for fear of how I might sound (again except for in place I feel drowned or very safe). Lip smacking, cutlery hitting teeth, loud breathing, chewing, drinking, any crackling noise (wrappers etc) and low grade sounds (that mean I struggle to identify them), to name just a few, all make me very stressed and angry. People think it is an oversensitivity to sound, but its not. Tests have shown normal brainwave reaction to offensive sound like babies screaming and nails on a chalk board in people with misophonia, the abnormality only shows with specific sounds and those sounds can be different from person to person. It is often linked to anxiety and PTSD. 

Im not sure what you mean by 'help'. What sort of help are you talking about? What sort of help are you expecting from an OT? They will likely recommend noise cancelling headphones to use as needed. Exposure therapy often gets poor results as it doesnt deal with any causal factors. Id probably start with looking into anxiety as the first port of call. Also possibly trial a white noise machine? I use one at night to help with being able to rest. The more tired and stressed I am, the worse my reactions to sounds can be. 

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liveworkplay

Thanks, I was beginning to think we were alone in dealing with this. The GP has suggested an OT might help with coping strategies and desensitizing to a degree but I really don't know what "help" At the moment she lives in her noise cancelling headphones 24/7...yes even sleeps in them. She has to be in another room when we eat (mostly at the other end of out open plan lounge dinning area).  I understand she is not reacting on purpose and this is a real physiological response but she won't be able to function in society is she doesn't learn some coping strategies at the very least. Plus I need some concrete evidence and ideas for her school (who have been very good) to help here there as well. 

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Expelliarmus

I wish I had an answer. DH takes offence consistently when I can’t handle his chewing. 
 

My issues are not as intense as your DD’s, OP but I wish I had an answer because I’m tired of being called a d***head when I have to distract myself from noisy chewing. I’ve been making tapping noises with my hand for example and DH gets offended. Well. Do t come and sit with me in a quiet room to eat when you KNOW you have jaw issues that mean you can’t eat quietly! He can’t help it though!!!

Mate. Neither can I!

So, in short, I am no help but good on your for recognising people can’t help it. 

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DQMission

Your GP is not a specialist in neurological disorders. Desensitising doesn’t work. There are no real coping strategies that have been found to help other than avoidance. Is your child being treated for anxiety?  Well managed anxiety can reduce how severely your child responds to the trigger sounds. As for being able to function, that’s kind of the point, it can be a life changing issue. It is for me and is for both of my siblings. There are things I can’t do and can’t participate in and that’s just part of my life. Again, not sure what you mean by evidence and ideas. Not trying to pick, I am just not sure what you are after so it’s hard to offer ideas that might be what you are looking for. it’s a known diagnosis, and aside from avoidance, there are no proven treatments. What does the school want from you? What do you want from the school? Most importantly, what does your child want?

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liveworkplay
Posted (edited)
29 minutes ago, Yippee-Ki-Yay said:

Your GP is not a specialist in neurological disorders. Desensitising doesn’t work. There are no real coping strategies that have been found to help other than avoidance.....Not trying to pick....

29 minutes ago, Yippee-Ki-Yay said:

 

 

Thank you for your helpful...or not...comments. I am sorry you have not found anything that helps but there is research out there that says SOME people get SOME help from different approaches such as music therapy, counselling,  TRT and CBT. The GP is the first port of call for referral to OT and psychology. Yes, she is not a neurological specialist but just telling someone sorry, there is no help at all in managing this, you are on your own, is not helpful.  Misophonia is also linked to autism, ADHD, OCD and fragile X syndrome. If it is familial in your family, it may have been worth checking out...a GP can help there.

Edited by liveworkplay

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DQMission

I am sorry I have come across poorly. I didn’t intend to make you feel bad. The current thinking is that when certain therapies work it is usually because they help reduce anxiety rather than addressing misophonia directly. Misophonia is often confused with sensory issues associated with autism. My research over 25 years and my life experiences as well as the experiences of my siblings talks about a strong link between misophonia, trauma and anxiety. The Sensory issues with sound associated with autism which both of my children have are less noise specific are more related to volume rather than sound type. But that is just anecdotal and I can’t back that up with actual research. 
 

I have tried many things over the years and so have my siblings and have been mocked for being stupid and pathetic and have had family members deliberately make noises that distress me and laugh about it over decades. I hope you find something that works for your family, but most importantly for your child. I hope you don’t choose to do any exposure therapy while she is not of an age where she can give informed consent. Best wishes, I’ll shut up now.

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