Tourette Syndrome - a little education.

[DestinedToBeOutlived]

There has been a lot of misinformation on here due to recent events, so I thought I would share what life is like for my dd, who has been living with tourettes and seizures for almost a decade.

I hope other parents, and those who live with tourettes can also share whatever they feel comfortable with.

syndrome - NHS [[https://www.nhs.uk/conditions/tourette-syndrome/ share.google/mxz8qKuhru11KtzQH

My dd also has epilepsy, often the two go hand in hand. Her tics are as involuntary as her seizures.

She absolutely cannot help what she shouts or when. It's not just shouting either, it's things like head jerking, whistling, blinking really hard, hand movements. These are often painful for her, and as such her school is at about 40% attendance.

Because of the narrative around tourettes, as displayed on many threads, kids stay away from her, so she has no friends, the only other kids that talk to her are other kids who have tics and they can't really be in the same room as they all set each other off a lot of the time and it all ends up very painful for all of them.

We have tried endless medications, most made her worse, some made her tics a little better, but came with side effects that just weren't worth the trade off.

Because of the attitudes of others she suffers from anxiety, which make things worse for her.

She can be walking along quite happily and the shout that I'm a slag, or she can be in the middle of school and start shouting things like "jam and toast" as well as many, many other things.

Sometimes she will have a seizure and people rally round and understand that, but there is no understanding for her tourettes, because people seem to think those are voluntary, or she can suppress them, or she can walk away and calm down and she will be fine.

Tourettes simply doesn't work like that, the tics are as random and involuntary as her seizures.

It could come on at any place and any time at all.

She has tics in her sleep so wakes up in pain every morning, which also effects her schooling.

You may see a 20 second snapshot of someone and think it's funny or offensive, but unless you have to live with it you really don't have a clue.

It's not a case of "well you must be thinking that, that's why you said it", it can't be prevented any more than you can prevent a hiccup.

To anyone who has formed an opinion due to the recent news story, please educate yourself about tourettes first. It's a scary syndrome and you're not in control of your own body. Can you imagine living with that day in, day out.

You wouldn't tell someone in a wheelchair to walk because their wheelchair is in your way, or someone who has asthma to stop having it because their coughing is pissing you off, or someone having a seizure to snap out of it because you need past them, so why are we telling those with tourettes to make their world smaller to accommodate people?

OP Thankyou for your post itb was very informative

i watched a Documentry on Netflix about Children with Tourettes it was very interesting i can remember a young girl called Bianca on there I dont know if its still available too watch if it is I highly reccommed

My child with tourettes is only 9, almost 10 so too young but I absolutely will when he is a bit older. My other children are 15, 17, 21, 23 and 26.

I have bought it on prime to watch it with my 15 and 17 year old. I saw it in the cinema when it came out. My adult children have seen it.

My concern for my son would be seeing the violence experienced by JD in the film. But I do think from age 13-14 I would let him watch it with me. Obviously it also depends on yoir child, their understanding and needs.

I missed how old your child is, will read back.

@Sheldonslovechild have you seen it yourself? If not watch it on your own first only you can judge how your daughter may react. I think it is a brilliant film, its very well done, its funny, sad, heartbreaking but also heartwarming. It was a film that gave ALL the emotions.

Yes, my daughter and I went to see it. She’s 20 now, so it’s up to her really

Yes, it did massively set her tics off, but other people ticcing always have so she’s pretty used to it and expects it. She used to go to a teens with tics and Tourette’s support group and it was always utter chaos.

Her tics are quite dependent on her mood, so if she’s stressed and anxious, they’ll be violent and aggressive. If she’s chill and relaxed, they’re quite harmless, if she’s happy and excited they’re like a hyper 2 year old. She was relaxed in the cinema so her tics were fine, but if she was worried about something coming up I might suggest we go another time - if that makes sense?

Yes my dd is 15 and we saw it at the cinema.

It did set her off. She gets set off with kids at school with tics as well.

We went on a Friday night so she would have the weekend to recover though as we expected it, so might be best to wait a week 💐

@Springersrock thats really intetesting re your daughter and tics varying depending on mood. My sons absolutely go through the roof when he is anxious but there is also a correlation like that with mood. Happy almost stimming tics, clapping, random silly noises. Same with body movements but if he gets upset or frustrated they rapidly can become more aggressive, jerky, and inappropriate.

We have co morbid conditions autism, pathalogical demand avoidance, profound sensory issues and sensory overwhelm contributes to the tics as well. Its such a minefield unpicking it all as shock language is a part of the pda as well.

And I have noticed the contextual element to tics how he bounces of other people, children, behaviour he sees etc.

We are yet to meet anyone else in RL with tourettes, I need to see if there are any local groups.

Thanks everyone. Dd is 12 so think the suggestion that I watch it first is a good one.

Unfortunately she hasn't met anyone else with tourettes so handy to know that the tics may be set off by the film. I had read that somewhere but wanted to ask.

Has anyone tried or know someone who has tried the neupulse device ? I believe there’s a general roll out in June.

Yes, my daughter was due to be involved in the trial in 2022 but she was then diagnosed with non epileptic seizure disorder so couldn’t do it. I don’t think it will be something she can use unfortunately.

@Madthings My daughter is also Autistic and also has non-epileptic seizure disorder and they all seem to have an effect on her tics too.

Also, stuff she’s doing impacts them - she rides horses and when riding she barely tics - and one thing I’ve noticed that absolutely fascinates me, is that her pony can tell the difference between tics and actual instructions - for example, she has a clicking tic, but her pony can absolutely pick up on what’s a tic and when DD means it. I assume it’s to do with how she holds her weight and body when riding but I find it really interesting

Most neurological movement disorders and conditions get worse with stress, anxiety and tiredness. My tardive dyskinesia certainly does. My involuntary movements were terrible today when I had a panic attack 😫

https://neupulse.co/

A great thread.
I have a friend who has a young adult DD with Tourette's. She does swear and shout slurs. I have been out with them and an old lady walked past. She shouted "miserable old bitch". She also has physical tics that hurt her a lot. Sometimes she is out in a wheelchair as her legs kick out and make her fall.
I have known her since she was small, and the Tourette's started in her mid teens. I was worried she would call me a fat bitch or something, but I was assured that whatever she said does not mean she is thinking it, or agreeing with it. She can't help it.
She should not have to, but she covers her self in badges and lanyards about her Tourette's so people can at least look and see before they get mad she had called them fat or whatever.

I cant even imagine. I had said from the start of my sons tics that anxiety and stress made them worse and was ignored by school etc.

Now that I have a letter from paediatric neurologist stating that I am having it added to his ehcp.

We had a terrible time where the achool were asked to keep a diary of his tics, they told me they were and then they failed to because it was too difficult in a busy classroom.. but they didn't tell me they weren't doing it.

Unfortunately for my son his PDA results in extreme anxiety to even simple demands, even his own need to eat etc. Reducing demand, using declarative language snd supporting his need for autonomy help reduce the anxiety but its hard when even his own want to do something creates demand which creates anxiety... which makes tics worse. Add in stimming, shock language, impulsive behaviour.. it makes it all really complex. I feel like every day I am learning more and I work with complex needs children in specialist environment.

Tourettes gas many comorbid conditions we have old traits, obsessive handwashing which again can be linked.

The brain and neurological systems really are so complex and we have so much to learn. I have not heard of your particular condition so I shall go do some googling . Thank you for sharing.

the reaction around the BAFTAS has really shocked me. I came from a lay mans understand of Tourette’s, not in depth but have covered it in nurse training etc. it absolutely baffles me that people cannot grasp the fact that what he is saying is completely involuntary and likely it was that word BECAUSE that word is the most inappropriate in the situation!
i cannot imagine how hard it is to live with, it looks utterly exhausting and debilitating. That should surely be the focus!
The swear words are just words. It’s just language, no more no less. Children hear swearing all the time, there are far worse things. The thing that makes words worse than just noises is the intent behind them and there is no intent with Tourette’s so I really cannot understand why people can’t grasp that. I KNOW it isn’t a word that should ever be said and how hurtful it can be - however the breathtaking lack of empathy for JD has shocked me. He shouldn’t have to be humiliated for this.

This sums it all up so well 👏

Thanks @Saffronyy - tbh I am exhausted and my brain is NOT braining today so I wasn’t entirely happy with how I phrased things. I’m pleased you found order in the muddling mess! 😂

You're very welcome 😊 it's always good to talk to others who understand and empathise ❤️

My condition is a supposed "rare" neurological movement disorder caused mostly by psychotropic medication like antipsychotics and antidepressants, but antisickness and also other classes of medication can cause it too. It's bloody horrible and I hate it, it's actually torture sometimes and had ruined my life in a way (I know that sounds hyperbolic but I genuinely feel it has). It's essentially brain damage from neurotoxic medication.

But, hey ho. I am still able to speak, see, and walk. Even if i am a bit twitchy lol 😆

As the mum of a disabled son it's been a depressing week realising how much visceral hatred there is out there for disabled people.

Thank you to everyone who has shared their story, and to everyone who has taken the time to read everyone's stories.

It has been quite depressing this week, with the overwhelming attitude I've seen being that disabled folk are OK as long as their disability fits certain criteria and doent bother anyone else, but it also been very heartening to see a good amount of people who are willing to learn and understand too.

Overall I'm glad these conversations are being had now.

At the end of the day, the people of colour who were offended or traumatised by John's outburst can go on with their lives while John has to live with his limiting and distressing condition. Fortunately, it appears that he lives in a close community where he is well known, accepted and loved by all. I do hope he is doing OK given the furore.