Do the rages associated with Tourette's get better?
April 1, 2016 8:59 AM   Subscribe

Do children with Tourette's rages eventually improve?

I have a child who is in the middle of elementary school. He has Tourette's and various co-morbid conditions. We have a roster of professionals working with us and have for years. He has problems with sensory processing, may have ODD now. He is lovely with other people and kids and falls apart at home.

As part of this, he flies into huge rages, often around transitions, especially if a screen is being turned off. Previous recommendations were for me to go into the bathroom for 15 seconds while he calmed down. But he's getting bigger and this is just making him angry now and he escalates and looks for things to be more dangerous or destructive. There's only so much safety proofing you can do without living in an empty space. Books, shoes, mugs, sensory toys - they all become weapons - and he will seek out sentimental, important or expensive items to destroy. This has been going on for years. I am his primary target.

Things have improved in many ways. He's on medication, but we can't go any higher than this dose. But he is still flying into rages. Our team is working with us. It's always worse when there's a transition - such as this week, the week after spring break. When things are okay, they are okay. But sometimes he can hit me 40x in an hour.

But I'd like to know if this ever really gets better. I don't know if people with Tourette's just keep on raging through their teens and adulthood or whether they end up beating their partners and parents. I have read a few articles and attended presentations. But I've never really heard anything in detail, other than a presenter who told me that he eventually stopped raging when his roommate told him to move out. Suggestions for more information on these storms, along with articles, books, blogs and online resources appreciated.
posted by anonymous to Health & Fitness (9 answers total) 5 users marked this as a favorite
The BBC made the documentary John's Not Mad on a 15 year old Scottish kid with Tourette's back in 1988, and then did a follow up in 2002 when he was 30. John doesn't present raging specifically, but it's nonetheless a unique window into the history of someone with Tourette's. In the 2nd doc, he also meets up with fellow Tourette's sufferers.
posted by 7 Minutes of Madness at 9:18 AM on April 1, 2016

OK: got that mixed up! The 2002 link is for another follow up they did in 2009 when he was 37. Here's the 2002 doc.
posted by 7 Minutes of Madness at 9:27 AM on April 1, 2016

Is your team just accepting the 40x an hour hitting as "something we're working on?" Because you need to be safe in your home, especially as he gets older, and personal violence should not be tolerated as the status quo. I'm afraid--and you may be, too, from the tenor of your questions--that if this isn't explicitly addressed you won't be able to care for him in your home in a few years.
posted by praemunire at 9:33 AM on April 1, 2016 [12 favorites]

Is this a daily thing where he is holding it together in public or at school and then decompensating at home in the safe space around you? Or is he able to cope for several days (camp, overnight trips, or if you've been away for travel or other caregivers) without showing the same behaviour and instead he's got rage that's targeted specifically at you?

I've had three kids attack me and two were because of trauma, coping methods, and I was the safe space, and eventually the kids calmed down with specific anger therapy management treatment (I think it was CBT), but one targeted me and it was controlled and it was a whole different level of crisis.

The decision to break personal sentimental objects is a bit of a red flag. 40x hitting isn't that much - I had a kid bite me for close to an hour, they can just be unreachable when they're in that headspace - but it's whether they are planning and choosing to attack you out of focussed specific anger, or if they are spilling over with pain and you are the only person they trust not to hurt them in return. The difference for me was fear. I was never truly afraid of the two kids who hurt me in their own fear, just tired and pissed off and worried they'd hurt themselves accidentally, even with the bruises and bite marks on me. But the other one - I was scared increasingly.

Memail me if you want to talk about it.
posted by dorothyisunderwood at 9:54 AM on April 1, 2016 [8 favorites]


Your team needs to get on top of this STAT.

Are you doing therapy in how to handle this emotionally without tearing yourself apart? It's got to be extremely stressful.

Has your son been assessed in your home and have you recorded/documented his behaviors?

Telling you to lock yourself in the bathroom is just stupid.15 seconds isn't enough time for a normal kid that age to process his emotions. What happens if he breaks glass and cuts himself or sets a fire while you're locked in?

Your professionals are failing you.

I know absolutely nothing about living with this. I have an acquaintance with a Tourettes teenager who seems to be coping such better. Apparently it's a combination of finding the right drugs and years of behavioral modification. Is your child getting this type of counseling?

As stated, I'm totally clueless about it, but if electronics are a major problem, couldn't you outlaw all screens in your house? Dump the tv, computer, and get a stupid no-screen phone instead of a smart one. Could you physically wear him out daily with some type of sports or activity? How about yoga or structured meditation for both of you?

Best of luck to you both.
posted by BlueHorse at 10:19 AM on April 1, 2016 [1 favorite]

My kid had a different diagnosis but similar behavior pattern. Memail me as well if you'd like to know more. I was afraid of her and rightfully so for many years. We have a wonderful relationship now that she's older. Still, I deeply regret not setting healthier boundaries about physical aggression toward me much earlier in her childhood. Do not go down our path if you can possibly avoid it. Good luck!
posted by Bella Donna at 10:24 AM on April 1, 2016 [3 favorites]

We have a roster of professionals working with us and have for years.

Can you consult additional professionals for second/third opinions? They've got to have colleagues, or maybe you can seek out other professionals with the same qualifications.

This sounds really tough on you, and not great for your kid. I'm so sorry you are going through this. You really need two things here: 1) support for yourself, whether in therapy or a support group or whatever, and 2) a different strategy for dealing with these rages to try to modify his behavior. I would worry that waiting it out could further entrench the behavior and become more dangerous for both of you, so if at all possible try to be proactive by seeking additional professional support and pushing your current team to try a different approach and give more guidance.
posted by JenMarie at 11:34 AM on April 1, 2016

There is a common parasitic infection that has been in the news recently as linked to rage behavior. I would get him checked for that.

I have two not neurotypical son's and I have health problems and multiple relatives who have anger management issues for various reasons. Everything I have read, seen and experienced indicates it can improve, but it probably will not magically improve all on its own simply because time passes.

You should look for studies on biomedical interventions that have shown to be effective. I don't have links handy, but I have seen studies over the years that suggesuggest that certain nutritional supplements help with keeping kids calmer.

Sensory processing issues is something I have first-hand experience with. Getting my kids healthier, including addressing nutritional deficiencies, has reduced those problems. Reducing those problems has reduced the social issues as well.

I have one child with such a bad temper that my primary goal in raising him was to make sure he didn't end up in jail or murdered for getting all het up with the wrong person. He bit and hit a lot when he was young. We worked on health issues and also worked on it socially. So, I think it can get better, but it gets better with concerted effort and problem solving, not just because time passes.

I will add that I also did a lot go rearrange our lives so they weren't under so much pressure to fit in. This included things like making the house quieter, making computer and Internet available all hours, and much more. I shaped our lives to us because it was clear that getting us to conform would involve breaking people. I did not feel that would go good places.
You are welcome to memail me as well.
posted by Michele in California at 12:06 PM on April 1, 2016

I do wonder whether your son's co-morbid conditions explain these rages? (For example, ODD could explain them) I cannot claim any expertise on Tourette's - it's far from my knowledge base. However, as far as I'm aware the clinical manifestations of Tourette's do not generally include rage and violence, and that these are typically caused by the co-morbid conditions. Therefore I think the key is not necessarily the natural history of Tourette's and your treatment for that conditions, but the identification of the precise co-morbid conditions from which he is suffering and the treatment of those would be paramount.

Also, the Wikipedia article on Tourette syndrome has a surprisingly detailed section about prognosis.

As a side note, I absolutely disagree with the advice to get your child checked for Toxoplasmosis (30% of everyone has a latent toxoplasma infection, there is only a single study linking a specific psychiatric diagnosis, Intermittent Explosive Disorder, which your son has not to our knowledge been diagnosed with, with this infection, and there is no evidence that any treatment would be helpful regardless).
posted by treehorn+bunny at 8:25 PM on April 1, 2016 [8 favorites]

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