Tourette's, OCD, Misophonia - One little boy needing help

K

Kreynirg

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Joined
Nov 13, 2016
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#1
I'm not sure how much space is allowed in a post. Our son has had Tourette Syndrome since he was a baby. Now he's 13 and can hardly function outside his room. He can't listen to our voices or even look at our faces for fear we may make a noise that sets him into a huge emotional rage. His current Tourette Tic is needing to suck on ice chips every 30 seconds to alleviate a feeling in his throat then spitting the saliva onto his clothing because he can't swallow it due to feeling it is contaminated. We are just looking for advice, direction, help of any kind. I am going to attempt to post the long email we just sent to his main doctor at BC Children's Hospital. Thank you in advance if you get through it all. Here goes:

From: "Kevin
To: "Roger
Sent: Saturday, November 12, 2016 2:32:57 PM
Subject: Re: Kai

Update on Kai:

Good afternoon Dr. xxxxxxx

We wrote this letter a few days ago but since them we are compelled to update you even further. Kai recently (past 2 days) has regressed to nearly the same condition he was in last March. He has all but insisted on complete silence and us talking outside to prevent Misophonia and other emotional rage events. Despite how well he had done presumably with the Prozac, the 60mg per day doesn’t seem to be helping now. When we talked to Vince Matlo he suggested to both us and Kai that Kai should start doing more of the little things we do for him in the process or making him comfortable. We decided that if he was to always get his own ice chips it would be a great start. We tried this without much success. The main issue is if Tara or myself happens to be in the kitchen area when Kai needs ice he has to cover both ears, his nose and vision to prevent the risk of seeing a sound, hearing a sound or smelling something. He can only free up one hand while his shoulder and other hand cover the most sensitive ear and nose. Of course with only one hand filling his cup with ice is nearly impossible and always results in a huge mess. A couple times in a panic he left the kitchen with the tap running (for sound diversion), freezer door wide open and the bin of ice left out to melt. When we insist he cleans it all up it ultimately turns into a rage event from hearing or seeing something.

In text conversations we reminded him of the importance of Mr. Matlo’s suggestion. There were numerous texts where Kai argued about us just making things easier for him. At one point he suggested he wanted to leave home for somewhere that would provide all that care without question. We don’t want to force him into running away and becoming lost in the world, turning to street drugs for relief if he even survived long enough to make it to the streets.

Kai is not in school now (for over 2 weeks), but this time it isn’t specifically due to certain voices or sounds. This time he his simply too self conscious of the ice eating, spitting and soaked clothing. No professionals have asked him anything about that. Mr. Matlo insisted there would be a definitive reason Kai wasn’t wanting to be at school and a solution for that. We had trouble conveying to him that the self consciousness would only go away only when the Tic of needing ice and not wanting to swallow the liquid disappears. As far as we know someone can’t be “talked out of” Tourette Tics. In your opinion is that so?

Kai keeps insisting that all the Psychiatrists, Psychologists, Therapists, Counsellors and doctors only ever ask us what he needs and never take the time to ask him. As difficult as it is for him to speak with most people he still feels like he’s being left out of the entire healing process and to some extent we have to agree. It is difficult to get time with any professional we can access who can actually spend any time with Kai to find out what goes through his mind due to all his conditions.

Is there not an analytical mental health department at Children’s Hospital where Kai could to spoken with, observed, counselled, tested or anything like that? He is good at keeping it all together for an hour or so as he did at Vince Matlo’s office and even when we talked in your office, but eventually everything starts to come to the surface.

Is there any other Hospitals or clinics in Canada who could see him? When things get to this stage when he can’t make visual contact, hear our voices, smell our scent or even when faced with disappointment sends him into a rage sequence none of us but especially Kai has much of a life to live.

When everyday people go off the rails for some reason and become suicidal or dangerous they are put into the “psych ward”, drugged up and kept there indefinitely, is that our only option when things get unmanageable for him and us?

We really need to make some progress. He feels that no one out there is actually trying to help. Kai has fewer options to enjoy life and be happy than many people with physical afflictions. The funny thing is if he had some physical disease where there was a chance to be healed or have death postponed, he would have a back stage pass to all the care in the system, but give a kid a combination of debilitating mental conditions and he is pushed aside.

Any suggestions you have that might lead to some help for Kai to have a life outside his mental prison would be much appreciated.

Anyway back to the first update….

We thought we would send an update on Kai since you are the one doctor we have seen who has the most experience, education and resources when it come to Kai’s mental health conditions . He is still struggling to live a “normal” life and we are still struggling to find help for him.

Dr. Burkey recommended us to the Kelowna Psychologists Group since they have numerous, highly educated and experienced therapists and counsellors. We were able to get an appointment with Vince Matlo who is very experienced but hasn’t yet received his Psychologists certification. We chose him since his billing rate was $130.00 per hour as opposed to $180.00 per hour and he has much the same experience as the registered psychologists. Either way it is an expense we will struggle to pay for not to mention the hotel costs since Kai’s requirement for a separate room forces us into the suite category. The expense of our overnight trip to Kelowna and the private billing was a huge issue that perhaps resulted in a very mediocre course of action based on Mr. Matlo’s findings. He was unfamiliar with the concept or meaning of Misophonia despite the long letter describing Kai’s issues we sent in advance. Not to say there wasn’t merit to his process, he did have some valid ideas and points to make however, his idea that most of Kai’s symptoms could be diminished with therapy didn’t sit well with us. Vince thought that most importantly Kai should get back to school. We agree but the reason Kai is out right now is mostly due to is his self consciousness of the Tourette tic he has – sucking on ice to relieve the feeling in his throat and spitting the watery saliva all over his clothing isn’t something he could be “talked out of”. If getting rid of Tourette Syndrome was that easy Kai would be having a great life right now.

Needless to say we left unsure if we would book a Skype session for $130.00 to address what was generalized as an anxiety issue. There’s no doubt that Kai would have anxiety over avoiding sounds and perceptions of sounds and the appearance to his peers of a kid who spits all over himself and eats ice chips every 30 seconds.

The reason for this update isn’t really to talk about another costly dead end but more to let you know how Kai handles the trip. His symptoms of Misophonia and the frequency of his main Tourette tic have increased lately to the point where he wasn’t able to hear my voice, look at my face at all or even get to close to me since he negatively reacts to my scent, as well, he could only hear Tara’s voice slightly more and for short conversations but still couldn’t look at her either. This actually reversed somewhat during our discussion with Mr. Matlo.

So how did the two day journey play out? First off was what about the ice chips? Kai goes through about 8 ice cube trays ground into ice chips every day. The grinding is left to me since our antiquated party ice chipper is difficult to turn by hand. I ground up enough for the ride there then a couple more bags for the stay and return trip. We packed it all into a cooler with frozen jugs of water. It made the journey. Then, since we knew Kai has to have a fan on in his room and in a vehicle, I bought a power inverter for the car so we could run two fans on the 5 hour trip. For the past couple months Kai has to have the window of a vehicle down to make noise but more importantly to blow smells he reacts to away. He rests his head like most dogs do with the full force of the wind on him. This window-down process has two pitfalls one being the colder temperatures we have now, the other being the noise it creates for the rest of us. With only his window down at highway speeds you get a helicopter thumping sound in the car. The only way this is moderated is by having a second window open. Either way I get a throbbing headache after only a half hour.

We told Kai that instead of the window he had to use the fans. That didn’t sit well with him and he insisted on it being down during the first part of the trip. After two stops where I exploded in anger at him for not listening we figured it was not worth all the stress especially after hearing him scream that he couldn’t breathe when I had the window up and locked out. We stopped at Tim Horton’s and after another “heated” discussion I decided we would have to compromise if we had any hope of getting out of 100 Mile.

The window being open apparently is more important to divert the smells to prevent him gagging then for the noise. He gags over scents the rest of us can’t detect. One that gets to him is if we are following a newer car that accelerates the always produce a sulphur smell. All of us detect and handle that but it puts Kai over the edge. So the window stayed down with the exception of when he got too cold but usually within a few minutes it was back down and so was my window.

We couldn’t speak much, if at all during the ride. Even with music in his headphones he can hear whispers of our voices or he can see my mouth move which can set off a Misophonia rage so we just refrain from speaking. I had lots of time to glance in the mirror at him and found it sad to see him stretching his neck to reach the air with his nose. Meanwhile he was consuming tons of ice and spitting the saliva back out. We had packed extra clothes but by the time we were in Kamloops we knew it would be necessary to by some more since he had changed twice in the first 200 kms. and we were only half way there on the first day.

The mood was lightened while in Kamloops though when Kai got a big laugh out of discovering his A & W hamburger had no meat inside. It was good to see him laugh so hard because that is our Kai. We had already left that area so we did find a McDonald’s to grab him a “filled” Burger. Whenever we stop for food despite our offer for us to sit at separate tables Kai always fears hearing eating sounds so instead he chooses to stay in the car by himself. We bring him out his food then eat ours inside. It feels sad to us but for Kai it’s a way of life he has gotten used to in order to avoid Misphonia reactions.

Our trip continued much the same with lots of spitting, noisy window sound and some gagging with minor throw up. We arrived at the hotel and Kai was quite happy about his own room. There was an extra fan we requested and we set up the one we brought. Both those ran the entire stay. The door latch was okay for Kai to hear so we were able to freely open and close it without knocking or him covering his ears and chanting “please close the dooooooor” like he does at home to drown out the click.

Since Kai can’t touch and barely look at sheets and pillow cases I had to remove the hotel pillows right away. We then covered the bed with his last dry, soft blanket and discovered we would have to buy some other in order for him to cover up. Luckily Wal Mart was close by and they had the kind he can touch.

The next day we packed up and went to our meeting with Mr. Matlo.

After our meeting was done we grabbed lunch and headed for home. Once again windows down, Kai’s face and nose directed into the wind. As we past through the Westwold area where the road was windy, narrow and busy, Kai began making a grunting noise. We looked back and his cheeks were full of vomit (after he had smelled something). It took nearly 30 seconds to find a safe spot to pull over where Kai threw open the door. All we heard was “Oh no its all over the door!”. We were just happy it wasn’t on the carpet. We continued on with an uneventful stop in Kamloops then started the last half of the trip. All was going fairly well, Kai slept a bit. His shirt was off since they were all soaked by then. We passed the rest area and just when it was too late Kai yells out “why didn’t you stop – I have to pee!” We said we couldn’t turn back so we would stop in 70 Mile another 20 minutes away. That wasn’t soon enough and he insisted we find somewhere to stop. We turned on to a winding road to a mill and finally found a spot wide enough to pull over. He jumped out shirtless, in the dark, the wind was howling as he tried to pee. Then a truck came by, and another. We waited forever and he finally said “I don’t know what’s wrong, I just can’t pee”. It was obviously all the distractions. We made it to 70 Mile, found one of his soaked shirts and he ran in the store finally for relief. Not so long later our journey was done and we were home.

All of us were tired, frustrated about a seemingly pointless journey yielding less than desirable results. We keep trying these alternative chances of some relief for Kai’s symptoms but seem to just let him down. After some of his most stressful days he often asks when is the doctor going to call or he asks us to get the Prozac dosage increased. The pharmacist says it would not be recommended whereas Dr. Burkey says there may be room for a bit more. Of course the soonest appointment with him is December 7. Needless to say Kai struggles minute by minute, hour by hour, and day by day.

Often family members offer their advice or opinions on what we or Kai could do but given their limited understanding of his conditions and only seeing him with his best foot forward it is easy to think its no big deal. When we describe what actually goes on in Kai’s day they are usually shocked. I always put forward the question “would you want to trade places with Kai for even one day?”. It becomes very evident that no one would be able to cope out in their world if they had to suck on ice, spit all over themselves, avoid so many sounds, smells, textures and even visual cues in order to eliminate the risk of such emotionally draining reactions of anger, perceived pain, sadness and discomfort.

With Christmas fast approaching we often wonder how that will look. Normally we can sit around the living room as a family to exchange gifts. We can talk about what each other receives and what we should do during the day. Now those little things we usually take for granted can’t be attempted. We can’t picture a Christmas where we can’t speak, where Kai can’t look at Tara’s and my faces, where Kai can’t get too close because of the perception our scents will make him gag. He longs to be a big part of the family again. We haven’t had a dinner together for nearly a year. He tries to be part of everything by creating visual obstructions or listening to loud music in his earphones but if a song ends and he hears us talking somewhere he can’t stop the reaction. There are so many things for him to get through a day as peacefully as possible. We usually spend Christmas Day with family and friends, we haven't been able to see anyone in months as we feel bad leaving Kai out of those fun times. Good thing he is so strong!

We have watched and read about experimental therapies of people having huge success with “healing the brain”. We’re hoping we can find some clinical trial or experimental non-medicinal therapy that could help Kai back to a normal life. All of us live so freely and happily with such lack of appreciation for what is inherently our right. Then you think of someone like Kai who although has happy moments, everyday its a struggle for him to achieve them. Things as simple as looking at your parent’s faces, giving them a face to face hug, enjoying breakfast at the same table, not constantly wearing wet clothes or covering your ears to avoid random sounds, having the confidence to be amongst your peers without self consciousness; those are all so easy for the rest of us.

A notable reaction Kai has done for some time now is raging in the exact same manor when he doesn’t get his way as when a sound or sound perception has gotten to him. I get upset with him since he always says it was a word or a facial expression however there have been times where I pass him a note that says no to something without a word or visual contact and as soon as he processes the turn down he begins a rage. I call this bad behaviour but is it actually a fourth component to his other mental illnesses?

Anyway, this is our update, we’re not sure if you have much time to keep track of all these events or can offer any insight as to where we go from here. Lately it seems nothing is helping Kai towards having a life equally as fulfilling as the rest of us enjoy. We fear as he grows older, moving toward adulthood he may become even more reclusive. How would he ever go on a dinner date with someone or share a dorm room at college or even hold down a job that involves dealing with people. It would be pretty hard to explain bringing the thermos of ice, spitting on himself, wearing headphones with loud music and not looking at his date while eating is involved. Is this as good as Kai’s life ever will be. Its sad to think about.

Thanks

Kevin & Tara Grinyer
250-791-7246

--------------------------------------------------------------------------------

From: "Roger
To: kevin
day, October 31, 2016 5:10:51 PM
Subject: Kai

I seem to have lost contact with what’s happening, in the midst of everything else happening here...
I need to complete my report, such as it is, with an up-date, and get it to you.
If Kai’s status is still poor, then we need to work out another plan with all in agreement.
Could you please up-date me, including whether Dr. B is still actively treating Kai?

-- R
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M

Misophonia

New member
Joined
Jul 3, 2017
Messages
1
#2
Hello!

I know this post is a little old, but I just wanted to reply seeing as I also have Misophonia and live in British Columbia. I'm 25 now and got my misophonia at about age 10. I would definitely say I was at about a 7-9 scale in regards to how bad my misophonia was. Although I have great parents, I couldn't help my actions which really hindered my relationships with people closest around me. It was only when I turned 19/20 that my mother investigated further into it and found out that it was indeed a medical situation and wasn't just rudeness or what have you. I also had little cycles of OCD that would come and go as I was in childhood. I got punched in the head a few years back and have been experiencing very bad anxiety and depression to where I had to quit school and my job ect to focus on treatment. I started going to the SWINGLE clinic in downtown vancouver that specializes in neurofeed back (Neurotherapy) and was trying to recover from my anxiety that I got from a concussion. After two years I stopped neurofeedback to try more so regular therapy, but the swingle clinic definitely helped. I will say that it wasn't cheap (5 grand CAD ) but when I was able to decrease my anxiety, my misophonia also started to calm down. When my anxiety was at rough moments, so was my misophonia. They just mimicked each other. I'm at the point now where I never think about my misophonia anymore although I'm still working on anxiety and depression, the miso is not really a part of my life anymore. That was done without any medication, however, I just started some Cipralex to get me over the finish line with my anxiety. I also tried cipralex 3 years ago for a couple months, before I decided to try the swingle clinic out, and the cipralex totally stopped my misophonia. Not sure if that would be the case with most people, but it's definitely something to consider. I hope things have gotten a little better for your son but if not, definitely head over to the swingle clinic and see what it's all about. They also do speaker sessions in the lower mainland so you can see what it's all about! Cheers.
 
K

Kreynirg

New member
Joined
Nov 13, 2016
Messages
2
#3
Misophonia

Thank you for taking the time to read and respond to our post. Kai is a much different boy now (14 1/2 years old). The biggest change came with the start of Haloperidol. That drug at even a low dose calmed his rages down by about 95%. He still suffers from Misophonia and other sensory processing/over sensitivity problems like scent to which a good or bad smell can cause him to gag and vomit. An example of a good scent: the smell of toothpaste on someone or hand cream, bad: the smell of dogs, the smell of mild sweat. He still reacts to murmuring whisper sounds, eating sounds, lisping th and s words etc. One notable difference about the information in your post is it doesn't seem like Kai suffers from any anxiety whatsoever. He doesn't seem to worry about anything. Could anxiety like what you describe go unnoticed? Can you give me examples of your anxiety? It is interesting to see that the reduction of your anxiety also reduced the Misophonia symptoms. I would love to hear more.