Tourette Advice/Support

[Loujc4]

Hi, Our 12 year old son has had mild tics for 4 years, but over last year they are getting worse especially within the last 4 months. We are getting severe facial grimacing, arm, leg movements, noises and recently he feels like he needs to hit things, like the wall. They are much worse in the evenings and we sit with him to help support. We think because he holds them in as much as possible during the day, they are coming out at night. He is worried about school and them happening and he has stopped wanting his friends stay over or stay over there because of it.
We are currently trying to find support as the GP only signposted us to a website and nothing els. I am aware there are behavioral therapies like CBiT and I am looking into it. But what I am looking for if advice for the interim from anyone that has experience similar and what they felt help there child deal with these tic attacks or any recommendations of therapies.
Thanks in advance.

Why are they not referring him?

My son has tics, his seem to come and go in waves if that makes sense, he'll have periods where they are a lot more noticeable and other times where they are suttle, doctors wont do anything because they arent bad enough. My boyfriend thinks I have tics too. What I think is a shiver he thinks is a tic due to how often it is

around 15 years ago my son was referred to a paediatric neurologist for his tics. We refused medication so he referred to a child psychologist who helped him feel more in control of them. She offered habit reversal training but he didn’t like the sound of that. He eventually grew out of them. They were always more pronounced when he was tired or over stimulated and disappeared when he was in flow. As a young adult he was diagnosed with inattentive ADHD (tic disowns ADHD are both caused by dopamine so they have a high co morbidity)

CBit teaches ‘competing responses’ - things your son can do when he gets the urge to tic that is incompatible with the tic so he is physically unable to tic. So for example clenching the fist to stop finger/hand tics. It has a relatively low success rate though.
It can be useful to teach your son strategies to feel emotionally comfortable/ accepting of the tics, and the confidence to say something to anyone who starts to take the piss. This is partly because the more someone is focused on- aware of the tics the worse they can be, so trying to accept and ignore them can be helpful, and it may help his confidence. Looking at other ways to help manage his stress and the physical environment can also help (over stimulation can make tics worse).
My son is 19 now. His tics only come out when he is stressed. He has some lovely friends and he has a low tolerance for anyone who thinks laughing at his tics is funny. But school was tough, so we built up interests and relationships away from school so that it felt less important.

Sport literally saved us!
the energy our son had needed to go somewhere!

also I think it’s important to understand that he will need to feel that his tic has been “satisfied” often our son needed it to hurt, if that makes sense

I feel very fortunate on his behalf, he had a huge network of friends who didn’t take any notice of his tics