Dr Kate and sudden onset tics

Posted Mon 17th Jan 2022 at 09:49 by Dr Kate

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GP Kate shares her experience of her daughter's sudden onset tics and their journey

It’s exactly one year since our eldest daughter, then aged 13, came home from school after a normal week and our lives changed overnight. She was a happy, active and independent girl, on the school athletics and football team, an animal lover and with a strong group of friends.

We noticed that evening as we watched our family movie that she was having a lot of neck jerks, as if she were clicking a stiff neck. The following day, she started jerking violently in the car. It was as if she were having a seizure, except she was conscious and terrified about what was happening.

Over the next 48 hours she rapidly progressed from simple vocal tics, such as sniffing, throat clearing and whistling to shouting random words, echoing things other people said and eventually swearing profusely. Movements included limb jerking, eye blinking, facial grimacing building up to lashing out at her younger sisters, beating herself in the head and chest and throwing things or her legs giving way.

I’m a GP, and initially reassured her these were tics, common in children and that we shouldn’t worry, things would likely settle. We looked up tic disorders and Tourettes online together and discovered lots of useful information on Tourettes Action website.  But our anxiety grew as the weekend progressed and things became far more severe than I had ever experienced professionally. We were scared by what was happening, it felt as if our beautiful girl was slipping away from us. What if she had a brain tumour, epilepsy, or some kind of encephalitis.

We sought help from our own GP on Monday morning and were seen by our local paediatrician who confirmed this was a tic disorder. We discussed the possibility of Tourette syndrome and Functional Neurological Symptoms (PANS too was covered).  It seemed likely our daughter had a combination of both TS and FNS. Looking back it was clear she had had small tics from the age of 8 years with sniffing, throat clearing and neck clicking.

We were directed to Tourettes Action for resources and advised there was nothing else locally available. CAMHS could help with coexisting difficulties such as anxiety, OCD, ADHD but had nothing for managing tics. Essentially, we were told there was nothing anyone could do for her and hopefully things would get better eventually.

3 months later we were fraught. I’d had to stop work, we were unable to leave her at home alone. Ironically, lockdown made it easier to try to continue with schooling. Attempts at going to school had been difficult with her swearing and shouting at teachers, throwing things, scribbling and ripping up her work. Everyone found it distressing, despite wonderful support from Lucy at TA, who has so many resources to help schools cope.

We were fortunate enough to seek help (privately) from Dr Tammy Hedderly who runs the TANDeM service at Guys Kings and St Thomas’ School of Medicine, London.

We had 2 appointments with Dr Hedderly in which she explained to us and our daughter that the tics (whether they be functional or not) are like a ‘short – circuiting’ in the brain, bypassing her normal control mechanisms. That her brain was being tricked. The theory that the tics are seeking a dopamine reward (the chemical in our brain that gives us pleasure) and any attention, whether it be positive or negative, gives it that reward. For example, stopping to help her back to her feet when she dropped to the floor on a walk, trying to stop her from hitting herself, laughing at silly things her tics said, crying after she’d lashed out at a sibling. All those reactions are rewards.

Dr H told us that if we were all on board our daughter’s tics could massively diminish over a matter of weeks, even days. She warned us that in the first 48hrs things were likely to get worse, as the tics ‘tantrumed’ for attention.

Let’s be clear – the tics were not our daughter seeking attention and they were in no way under her conscious control. They were real and terrifying and were stealing our daughter’s life and future.

Our instructions were to ‘ignore’ the tics as much as possible and ‘reward’ any non-tic time. Easier said than done! We felt there was so much tic that we would effectively be ignoring our daughter most of the time. But she was determined, so we arranged for her siblings to stay with grandparents for a week (as they in particular struggled not to laugh and respond to the ‘entertaining toddler’ version of their big sister).

So, we’d walk on as if nothing happened when she dropped to the floor; we moved to the other end of the table at mealtimes and carried on our conversation as if her tics weren’t upending her plate and throwing her drink, pausing to include her between tics; we would restart interaction with her whenever tics paused offering as much love and attention as we could. A period of non-ticcing would prompt – let’s make pancakes/snuggle up for a movie/do our nails/take the dog out.

Dr H was right. Our daughter’s tics were almost continuous for 48hrs, then slowly but surely we had longer pauses of tics where we could leap in with ‘reward’ attention. And within a week we could see a light ahead of us – we’d gone from there being more tics than our daughter, to more daughter than tics. Within a few weeks, we could think about the possibility of school again and within 2 months her tics were minimal. Though we did still have the odd occasion with a really scary tic, such as holding her breath until she passed out or not being able to feel or move her legs at all. We were all able to not give these any attention and fortunately they passed after only a couple of occasions.  She is now back to what we think of as her Tourettes tics – so minor that they previously went unnoticed.

Another key element to FNS, Dr H explained, is recognizing that a brain that is prone to tics is incredibly suggestible. Watching other people tic and talking about your own tics all result in more tics. You’ve probably come across the media phrase of Tik Tok Tics. We were clear our daughter hadn’t come across anyone with Tourettes or tics in real life or social media before her own began, but undoubtedly exposure online contributed and worsened things once she looked for support and understanding.

Our national specialists can’t yet explain the link between social media and the pandemic of sudden onset tics in teenage/tweenage girls but there is a significant correlation. I’ve seen in my own work the surge in mental health difficulties that so many of our young people and adolescents are being negatively impacted by social media.

The other big element is addressing that of emotional wellbeing. Psychology input can be invaluable for those with functional tics.

We found it helpful to consider the idea that we all have a cup that fills with daily stresses and worries. For example having not slept well, a school test the next day, overdue homework, friendship troubles, the normal adolescent struggles of working out who they are, how to fit in, parent pressures, family bereavement. When our cup is full, it only takes a drop to make it overflow – you can become angry, or anxious, or depressed or tic.

We can empty our cup with connection to other people ie seeing friends and family is really important; exercise and being outdoors in nature (the magnitude of the effects of the natural world on our mental health is an emerging reality); distraction ie things we enjoy such as hobbies, listening to music; and breathing techniques or mindfulness exercises to down regulate our stress hormones. There are many aspects CAMHS services can help with, regardless of tics, though they are so swamped I would encourage you to explore how to boost your children’s and your own wellbeing regardless of their input.

Every day I read stories online of increasing numbers of desperate parents with loved children starting down the road we have just travelled. This group of young people with sudden onset tics and other Functional Neurological Symptoms are such a new and rapidly expanding number that our health services are overwhelmed.

If you are affected, please see your GP, they will want to help. Remember we are generalists and don’t hold all the answers, but the specialists we can refer to are few and far between.

Many GPs will not have personal experience of Tourettes and tic disorders. Do direct them to the Tourettes Action website which has good resources for health care professionals and to www.neurosymptoms.org/en_GB/symptoms/fnd-symptoms/functional-tics/ which is a brilliant guide by Dr Hedderly and Prof Heyman from GOSH on functional tics.

I am working to help improve knowledge and understanding in primary care.

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