Re: parent of 14-yo boy with misophonia

[Guest guest]

Glad you found this group. Welcome. To: Soundsensitivity Sent: Tuesday, July 31, 2012 10:53 AM Subject: parent of 14-yo boy with misophonia

I have been reading and learning more about misophonia through all of you for several months, but I wanted to take time to introduce my son before I start posting my own questions. I didn't mean for it to be SO long, but I am hoping that people wondering about misophonia may see the similarities, understand and be more understanding. My son has misophonia with level 10 self-injurious responses. -- In Spring of 7th grade, at 13 years old, he started hitting his head on walls, lockers, and furniture at school after complaining of kids making sounds (beat boxing, hissing) in class. He would be released to hallway to cool/calm down. -- Teachers and his principal started letting him listen to an mp3 player for a calming music therapy. -- 8th grade continued with use of mp3 player, but head banging in class continues to concerning levels. He constantly complained of "hissing" and "chewing" "noises" at school with all staff members saying that no one was making sounds. He began listening to music 100% of school time. He prefers movie soundtrack or orchestra/symphonic music, for those wondering. -- In January of 8th grade, at 14 years old, he started tapping his head on wall, furniture, and his knees at home. -- In February of 8th grade he started having intense weekly incidents or attacks at school that cause concern for his safety. During these attacks he seems detached, inconsolable and unreachable or in a trance. At times whimpering like an animal. (panic or anxiety attacks?) Recovery time 10-60 minutes. -- In April of 8th grade year was isolated in a quiet classroom with an aide doing independent work for remainder of school year. -- At the end of 8th grade, 3 weeks before the 20/20 episode in May 2012, we found the page 9 description for misophonia. We felt like we were reading about our own life experiences. (http://www.hyperacusis.org/page9.html) -- We consider his self-harm at three levels: tapping, hitting and banging. Tapping is a gentle tap in a table or chair, where banging is concern for concussion. Although his neurologist says that a person can't really give themselves a concussion… Medical professionals: -- He saw psychiatrist from 3rd-8th grade for "atypical" ADHD and medicine management. -- He saw psychologist for most of 8th grade, but he couldn't "think of anything else to do" so we stopped going. -- He switched to neurologist in spring of 8th grade year for medication review and management. -- He began seeing a new therapist in spring of 8th grade recommended by Audiologist from provider list. She uses hypnosis and distraction activities to "suggest" ways to handle the situations that noise cause. He tells her that noises started to really bother him when he was 11. -- He sees an audiologist from THE provider list for evaluation and she confirmed misophonia recommending white sound generators to cope. Most of his evaluation had to take place in the sound booth because of noise and interruptions in the patient room. Luckily we live in a city with a big research center. He has tried white noise masking on occasion. He has typical misophonia behavior that others here have questioned and discussed: -- He spends most of his time in his room and eats most meals by himself. -- Agoraphobia is becoming a concern. His hyper-vigilance when we leave the house can be limiting. -- He controls his auditory and visual "diet" by spending most of his time on game systems or computer (how much of this is just typical teenage boy?) To go out as a family we let him "game" the entire time and use noise reduction earbuds. -- He copes by masking with mp3 player 100% outside of the house and van, 20% in the house but only around his sister. He and I do enjoy audiobooks in the van. -- He has auditory triggers of certain sounds, but does not trigger himself. He has four major sounds that he attributes to people that affect him: "hissing", "clicking", "smacking", "chomping" with hissing the mildest and chomping the worst. You do not want to be a "chomper" around him. -- He has visual triggers. His sister walks down the hall and he may tap his head but most often heads to his room. Also, kids who have bullied him at school, which includes a lot of kids, cause he to hit his head on the desks at school making the classroom setting almost impossible for him and others. -- For medications, we found that stimulants "increased" the noise. After several combinations this year, he is currently taking Luvox and Strattera. -- His official medical diagnosis is ADHD, OCD, anxiety but may expanded to include PDD? or Asperger's? He has some "little professor" tendencies and obsessions. -- His educational IEP lists Autism (language impaired) as the diagnosis. He has had an IEP since he was 3-years old. I wonder sometimes that his social language skills are behind because he can't stand to talk to people or the sounds they make. -- He is a bright child with a B-average even after spending only part time in class the last two years. I wonder what it could be if he didn't have his worries. I would also like to say to people in doubt of whether it is misophonia don't say: -- "Don't worry about the noises." -- "Ignore the noises." -- "Get over it." -- "I don't hear anything." But stop and really listen to your kid, your friend, your spouse…otherwise they could turn the rage onto themselves and self-harm. I'll never forget the psychiatrist telling me, "Well, you just tell him to stop hitting his head." This response lead to the switch back to the neurologist and review of medications. Thanks to all in this group for helping me to understand. ginny

[Guest guest]

Hi Ginny,I'm really sorry to hear your son has such a severe case of 4s. There have been a few people here in the past who have reported improving thier misophonia reactions through diet.I remember a mother whose daughter was having trouble with fighting at school. She had food allergy testing done and definitely noticed an improvement with her daughters reactions while the food elimination diet. http://health.groups.yahoo.com/group/Soundsensitivity/message/15892You can search the mothers name, Winterstein with the advanced search function to find her other posts.

Also there were a couple people here who claimed to be much improved by following the Gaps diet.http://health.groups.yahoo.com/group/Soundsensitivity/message/11397Welcome to the group.

[Guest guest]

Dear Ginny,

I want to commend on your efforts to help your son and to understand what he is

going through.

I began struggling with symptoms when I was about 7 years old. One of the

triggers was my younger brother " making noises " while playing with his toys.

These sounds enraged me to the point of tears, and I would yell at my brother to

stop. In an effort to defend my brother, my father would join in in making the

noises, as if I were bullying him on purpose and he needed to be defended. It

was awful.

I would've given anything for a parent like you who was trying to understand,

who acknowledged that I didn't choose to experience the world this way, and who

was trying to help me find some relief.

I hope this doesn't sound too trite, but have you tried taking him out into

nature? I don't mean to the nearest park, but to a wildlife reserve or national

forest, far away from the city and people? I have found a lot of solace and

healing in nature. It might be an amazing experience for him to feel safe enough

to take off the headphones for a few hours.

Sincerely,

Rebekah

>

>

> I have been reading and learning more about misophonia through all of

> you for several months, but I wanted to take time to introduce my son

> before I start posting my own questions. I didn't mean for it to be

> SO long, but I am hoping that people wondering about misophonia may see

> the similarities, understand and be more understanding.

>

> My son has misophonia with level 10 self-injurious responses.

>

> -- In Spring of 7th grade, at 13 years old, he started hitting his head

> on walls, lockers, and furniture at school after complaining of kids

> making sounds (beat boxing, hissing) in class. He would be released to

> hallway to cool/calm down.

>

> -- Teachers and his principal started letting him listen to an mp3

> player for a calming music therapy.

>

> -- 8th grade continued with use of mp3 player, but head banging in class

> continues to concerning levels. He constantly complained of

> " hissing " and " chewing " " noises " at school with

> all staff members saying that no one was making sounds. He began

> listening to music 100% of school time. He prefers movie soundtrack or

> orchestra/symphonic music, for those wondering.

>

> -- In January of 8th grade, at 14 years old, he started tapping his head

> on wall, furniture, and his knees at home.

>

> -- In February of 8th grade he started having intense weekly incidents

> or attacks at school that cause concern for his safety. During these

> attacks he seems detached, inconsolable and unreachable or in a trance.

> At times whimpering like an animal. (panic or anxiety attacks?) Recovery

> time 10-60 minutes.

>

> -- In April of 8th grade year was isolated in a quiet classroom with an

> aide doing independent work for remainder of school year.

>

> -- At the end of 8th grade, 3 weeks before the 20/20 episode in May

> 2012, we found the page 9 description for misophonia. We felt like we

> were reading about our own life experiences.

> (http://www.hyperacusis.org/page9.html

> <http://www.hyperacusis.org/page9.html> )

>

> -- We consider his self-harm at three levels: tapping, hitting and

> banging. Tapping is a gentle tap in a table or chair, where banging is

> concern for concussion. Although his neurologist says that a person

> can't really give themselves a concussion…

>

> Medical professionals:

>

> -- He saw psychiatrist from 3rd-8th grade for " atypical " ADHD

> and medicine management.

>

> -- He saw psychologist for most of 8th grade, but he couldn't

> " think of anything else to do " so we stopped going.

>

> -- He switched to neurologist in spring of 8th grade year for medication

> review and management.

>

> -- He began seeing a new therapist in spring of 8th grade recommended by

> Audiologist from provider list. She uses hypnosis and distraction

> activities to " suggest " ways to handle the situations that noise

> cause. He tells her that noises started to really bother him when he was

> 11.

>

> -- He sees an audiologist from THE provider list for evaluation and she

> confirmed misophonia recommending white sound generators to cope. Most

> of his evaluation had to take place in the sound booth because of noise

> and interruptions in the patient room. Luckily we live in a city with a

> big research center. He has tried white noise masking on occasion.

>

> He has typical misophonia behavior that others here have questioned and

> discussed:

>

> -- He spends most of his time in his room and eats most meals by

> himself.

>

> -- Agoraphobia is becoming a concern. His hyper-vigilance when we leave

> the house can be limiting.

>

> -- He controls his auditory and visual " diet " by spending most

> of his time on game systems or computer (how much of this is just

> typical teenage boy?) To go out as a family we let him " game "

> the entire time and use noise reduction earbuds.

>

> -- He copes by masking with mp3 player 100% outside of the house and

> van, 20% in the house but only around his sister. He and I do enjoy

> audiobooks in the van.

>

> -- He has auditory triggers of certain sounds, but does not trigger

> himself. He has four major sounds that he attributes to people that

> affect him: " hissing " , " clicking " , " smacking " ,

> " chomping " with hissing the mildest and chomping the worst. You

> do not want to be a " chomper " around him.

>

> -- He has visual triggers. His sister walks down the hall and he may

> tap his head but most often heads to his room. Also, kids who have

> bullied him at school, which includes a lot of kids, cause he to hit his

> head on the desks at school making the classroom setting almost

> impossible for him and others.

>

> -- For medications, we found that stimulants " increased " the

> noise. After several combinations this year, he is currently taking

> Luvox and Strattera.

>

> -- His official medical diagnosis is ADHD, OCD, anxiety but may expanded

> to include PDD? or Asperger's? He has some " little

> professor " tendencies and obsessions.

>

> -- His educational IEP lists Autism (language impaired) as the

> diagnosis. He has had an IEP since he was 3-years old. I wonder

> sometimes that his social language skills are behind because he

> can't stand to talk to people or the sounds they make.

>

> -- He is a bright child with a B-average even after spending only part

> time in class the last two years. I wonder what it could be if he

> didn't have his worries.

>

> I would also like to say to people in doubt of whether it is misophonia

> don't say:

>

> -- " Don't worry about the noises. "

>

> -- " Ignore the noises. "

>

> -- " Get over it. "

>

> -- " I don't hear anything. "

>

> But stop and really listen to your kid, your friend, your

> spouse…otherwise they could turn the rage onto themselves and

> self-harm.

>

> I'll never forget the psychiatrist telling me, " Well, you just tell

> him to stop hitting his head. " This response lead to the switch back

> to the neurologist and review of medications.

>

> Thanks to all in this group for helping me to understand.

>

> ginny

>

[Guest guest]

Ginny, I don't have any idea whether he'd be better off home-schooled or going to school. I can certainly see pros and cons both ways. The best I can suggest is to talk to him about it seriously and weigh the issues. Whatever decision you make can always be changed if it doesn't work. I'm so sorry that he is going through such a severe form of miso, and possibly other issues at the same time. I feel for you in your efforts to understand and to do what's best for him - it must be terribly challenging to know how to handle this.

Missy in Nashville

>> > I have been reading and learning more about misophonia through all of> you for several months, but I wanted to take time to introduce my son> before I start posting my own questions. I didn't mean for it to be> SO long, but I am hoping that people wondering about misophonia may see> the similarities, understand and be more understanding.> > My son has misophonia with level 10 self-injurious responses.

[Guest guest]

Welcome Ginny. So sorry to hear of what you and your son have had to endure. From what I've seen discussed here, it seems when there are comorbidity situations, it's especially difficult to cope with the triggers. Personally, I hate white noise, the last thing I would ever want is that pumped into my ear. I find an iPod with different noises and mostly music far more better to listen to when was trying to escape (although I no longer have to do that, thankfully) and earplugs at night to sleep, white noise keeps me wide awake. With that in mind, pay attention to him not wanting to do that or having adverse reaction to it, many of us here don't like white noise, and let him use his iPod with other noise if that works better.I strongly believe in diet as a part of the ability to cope as well. I do NOT believe food causes Misophonia. I do believe how well we treat our bodies helps with coping with the triggers. I have suggested many times that diet and exercise and sleep and positive thinking are paramount to coping, it won't take the triggers away but will help with dealing. Teenagers have it especially bad in my opinion because of all the added hormones and because they eat bad and get poor sleep. I'm attaching a link not in support of the supplement this article suggests one buys, but for the content. http://www.teenlinkusa.com/anger.htmlWhat we and especially teens eat and how we supplement is so incredibly important in my opinion. For instance, my 6 year old daughter and I got our genes tested for gluten sensitive and celiac, I have two of the former and she has one plus the celiac. We are now totally gluten free and sugar free. It makes a huge difference in behavior. It's incredible. Food doesn't just affect the stomach but the brain and all of our systems. Look up what eating gluten causes if you have two or more of the genes. it's mind-blowing, one of which is ADD. 80% of Americans have at least one gluten sensitive gene and 43% have at least one celiac gene, those are remarkable statistics. I guess my point is everyone really needs to look outside the psychologist and audiologist box and expand the ways to cope to be a whole body approach. This is a neurological brain disorder, what we feed our brains is essential to how it functions.Good luck! And kudos to you for being a great mom!Heidi

I have been reading and learning more about misophonia through all of you for several months, but I wanted to take time to introduce my son before I start posting my own questions. I didn't mean for it to be SO long, but I am hoping that people wondering about misophonia may see the similarities, understand and be more understanding.My son has misophonia with level 10 self-injurious responses. -- In Spring of 7th grade, at 13 years old, he started hitting his head on walls, lockers, and furniture at school after complaining of kids making sounds (beat boxing, hissing) in class. He would be released to hallway to cool/calm down.-- Teachers and his principal started letting him listen to an mp3 player for a calming music therapy.-- 8th grade continued with use of mp3 player, but head banging in class continues to concerning levels. He constantly complained of "hissing" and "chewing" "noises" at school with all staff members saying that no one was making sounds. He began listening to music 100% of school time. He prefers movie soundtrack or orchestra/symphonic music, for those wondering.-- In January of 8th grade, at 14 years old, he started tapping his head on wall, furniture, and his knees at home.-- In February of 8th grade he started having intense weekly incidents or attacks at school that cause concern for his safety. During these attacks he seems detached, inconsolable and unreachable or in a trance. At times whimpering like an animal. (panic or anxiety attacks?) Recovery time 10-60 minutes.-- In April of 8th grade year was isolated in a quiet classroom with an aide doing independent work for remainder of school year.-- At the end of 8th grade, 3 weeks before the 20/20 episode in May 2012, we found the page 9 description for misophonia. We felt like we were reading about our own life experiences. (http://www.hyperacusis.org/page9.html)-- We consider his self-harm at three levels: tapping, hitting and banging. Tapping is a gentle tap in a table or chair, where banging is concern for concussion. Although his neurologist says that a person can't really give themselves a concussion…Medical professionals:-- He saw psychiatrist from 3rd-8th grade for "atypical" ADHD and medicine management.-- He saw psychologist for most of 8th grade, but he couldn't "think of anything else to do" so we stopped going.-- He switched to neurologist in spring of 8th grade year for medication review and management.-- He began seeing a new therapist in spring of 8th grade recommended by Audiologist from provider list. She uses hypnosis and distraction activities to "suggest" ways to handle the situations that noise cause. He tells her that noises started to really bother him when he was 11.-- He sees an audiologist from THE provider list for evaluation and she confirmed misophonia recommending white sound generators to cope. Most of his evaluation had to take place in the sound booth because of noise and interruptions in the patient room. Luckily we live in a city with a big research center. He has tried white noise masking on occasion.He has typical misophonia behavior that others here have questioned and discussed:-- He spends most of his time in his room and eats most meals by himself.-- Agoraphobia is becoming a concern. His hyper-vigilance when we leave the house can be limiting.-- He controls his auditory and visual "diet" by spending most of his time on game systems or computer (how much of this is just typical teenage boy?) To go out as a family we let him "game" the entire time and use noise reduction earbuds.-- He copes by masking with mp3 player 100% outside of the house and van, 20% in the house but only around his sister. He and I do enjoy audiobooks in the van.-- He has auditory triggers of certain sounds, but does not trigger himself. He has four major sounds that he attributes to people that affect him: "hissing", "clicking", "smacking", "chomping" with hissing the mildest and chomping the worst. You do not want to be a "chomper" around him.-- He has visual triggers. His sister walks down the hall and he may tap his head but most often heads to his room. Also, kids who have bullied him at school, which includes a lot of kids, cause he to hit his head on the desks at school making the classroom setting almost impossible for him and others.-- For medications, we found that stimulants "increased" the noise. After several combinations this year, he is currently taking Luvox and Strattera.-- His official medical diagnosis is ADHD, OCD, anxiety but may expanded to include PDD? or Asperger's? He has some "little professor" tendencies and obsessions.-- His educational IEP lists Autism (language impaired) as the diagnosis. He has had an IEP since he was 3-years old. I wonder sometimes that his social language skills are behind because he can't stand to talk to people or the sounds they make.-- He is a bright child with a B-average even after spending only part time in class the last two years. I wonder what it could be if he didn't have his worries.I would also like to say to people in doubt of whether it is misophonia don't say:-- "Don't worry about the noises."-- "Ignore the noises."-- "Get over it."-- "I don't hear anything."But stop and really listen to your kid, your friend, your spouse…otherwise they could turn the rage onto themselves and self-harm.I'll never forget the psychiatrist telling me, "Well, you just tell him to stop hitting his head." This response lead to the switch back to the neurologist and review of medications.Thanks to all in this group for helping me to understand.ginny

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[Guest guest]

Here's another good article about food and behavior Ginny. This page specifically talks about head banging and what foods should be avoided:http://fedup.com.au/factsheets/symptom-factsheets/head-bangingHeidiMy son has misophonia with level 10 self-injurious responses. -- In Spring of 7th grade, at 13 years old, he started hitting his head on walls, lockers, and furniture at school after complaining of kids making sounds (beat boxing, hissing) in class. He would be released to hallway to cool/calm down.\-- 8th grade continued with use of mp3 player, but head banging in class continues to concerning levels. He constantly complained of "hissing" and "chewing" "noises" at school with all staff members saying that no one was making sounds. He began listening to music 100% of school time. He prefers movie soundtrack or orchestra/symphonic music, for those wondering.-- In February of 8th grade he started having intense weekly incidents or attacks at school that cause concern for his safety. During these attacks he seems detached, inconsolable and unreachable or in a trance. At times whimpering like an animal. (panic or anxiety attacks?) Recovery time 10-60 minutes.-- We consider his self-harm at three levels: tapping, hitting and banging. Tapping is a gentle tap in a table or chair, where banging is concern for concussion. Although his neurologist says that a person can't really give themselves a concussion…

[Guest guest]

I have encountered these cases quite a few times, where children try to hurt

themselves in a variety of ways.

I would be sure to consult

1) a psychiatrist, because that reaction falls on the far end or extreme end of

reactions, not in the middle of the bell curve

2) a psychologist who can help teach your son choices in reactions and try to

help him acquire different sets of skills for dealing with difficult situations

3) pediatrician to examine his body and history for any other syndromes or

issues

4) school psychologist to see how he is doing in class, is this just an at home

situation or is it all the time situation

5) a physical therapist or chiropractor, to see if this child has any issues

with his overal body health, even an exercise therapist to see if he can use

exercise as an off setting activity for his frustration

I will try to post other ideas but I want you to connect with people here who

have children who are like your son.

You are not alone!

Marsha , AuD