My daughter has Tourette’s - ask us anything

[Tourettesmum123]

Having had yet another super frustrating meeting with college and DD due to her reasonable adjustments not being met, I’ve been reminded again of just how misunderstood Tourette’s can be.

I did have a look to see if there was an AMA already, but couldn’t find one, so apologies if this has already been done

DD is on a bit of mission to try and help correct some of the misconceptions around the condition.

We’re not experts, just talking from DD’s own experiences with Tourette’s and how it affects her, but happy to answer anything.

Hi

My son also has TS. He's prepubertal, and has has symptoms increasing since 4 year old and a crisis at 7 years where his tics were so complex he couldn't walk well, feed himself etc.

He is currently doing ok with the help of Topamax and CBIT.

Can I ask, did your daughter have an increase in frequency of tics or complexity when she entered puberty?

We have been told to expect this and we are gearing up an EHCP (other needs also) to have the right support in place in secondary school.

No questions but I'd like to take this opportunity to wish you and your daughter all the best, OP.

Florissant thank you!

@onionringcheeseypuff DD started with simple verbal and motor tics - she has been ticcy for as long as I remember - and then the complex tics appeared when she was around 13. She started puberty quite young (her periods started at 10).

Oh I’m sorry to hear this.

what reasonable adjustments do you want in place ? And why haven’t they so far ?

What are her most common tics and are there triggers? Is she expected to stay quiet in lessons? Does this make it worse?

She has pretty simple reasonable adjustments in place for her Tourette’s - access to an unlocked quiet room if she needs it and just being a bit reasonable in their expectations.

This particular meeting was because

1. She had a big tic attack - she was having a very ticcy day and could feel a tic attack building. She wanted to access her quiet room for a bit to see if they would calm down, but her teacher refused to allow her to leave the classroom - big tic attack ensued.
2. DD had to do a task as part of her course. Options were to use a hammer, to do some painting, and a couple of other options. DD asked to do the painting task as she was a bit worried about using a hammer. Teacher insisted she use the hammer

DD also has Functional Neurological Disorder so has other adjustments related to that as well

I don’t know why they don’t follow them, it was all agreed in writing when she started college and I don’t think any of them are particularly unreasonable.

Her biggest trigger with her tics seems to be her emotions. If she’s happy or excited over something her tics are super active.

If she’s feeling down then her tics are fairly calm.

Her tics kind of ebb and wane, she picks up lots of tics from things she’s seen on TV, or something like that and she’ll get it stuck on a loop, currently it’s that bloody Calgon advert. That will fade though and be replaced with something else.

The one tic she’s always had is whistling - however, she can’t actually whistle herself

She is not expected to suppress tics in class.

She can, and does suppress tics, but that always bites her on the arse later so she doesn’t unless she knows it’s going to be a humdinger - but then she doesn’t always know.

Her classmates have got used to her and ignore it.

She does exams and tests on her own in a separate room

Thanks for this thread!

My ds has tics which started around age 3. I've read somewhere that if they are verbal and motor and last a year or more it would be Tourette's? Is this a year with no gaps in between or just a constant year with the same/various tics? My ds can have a break for a few weeks before they start up again for months on end.

Also, my ds struggles with his motor skills (writing etc) and I just wondered if it could be connected? I found the information from his diagnosis very limited from the consultant, he basically said lots of children have tics and he should outgrow it by his late teens. They are getting worse as he is getting older.

Thanks for the thread, it's interesting to read about her triggers. Is stress another one?

I've noticed a guy at the check out of my local supermarket has tics. It's rare it happens but when it does he seems to keep talking through it but it's interspersed with odd noises. Is the correct way to deal with it to ignore the tics and keep the conversation going? I feel it is but but am worried I'm stressing him more by continuing.

So DD was diagnosed after she had complex verbal and motor tics for at least 1 year.

She’d had simple tics for years - stuff like blinking, sniffing, shoulder jerks, a little head nod, etc and GP wasn’t interested in these.

It was once the big, complex ones appeared that they considered her for diagnosis for Tourette’s. She also had an EEG

DD also had issues with her motor skills. She was actually assessed for dyspraxia at around age 6 but she didn’t have enough traits for a diagnosis. She’s mostly grown out of it now.

We’ve always been told that Tourette’s often goes hand in hand with other conditions so I could well imagine all these kinds of things are linked.

If she also has FND, does she definitely have Tourette's?

CAMHS is full of kids that age with "tics" they developed from Tiktok. Verbal tics are extremely rare but with the TikTok contagious version, verbal tics are prominent.

@CeeceeBloomingdale yes, stress is another one. As is anxiety.

I find it quite fascinating actually. You can tell her moods by her tics.

If she’s happy or excited her tics are like an over grown toddler bouncing around with no filter.

If she’s anxious or stressed they can become almost aggressive and sweary

Definitely ignore it and keep talking. DD becomes quite self conscious and it makes her tics worse.

Is your daughter medicated for Tourette’s? My Dd is 14 and was diagnosed at 7. She takes medication 3 times a day that seems to help sometimes, other times she tics a lot. Tiredness is a trigger for her.

I have a 13 year old who has had motor and vocal tics for 4 years now. He has a diagnosis of paediatric tic symdrome but his paediatrician (today when we had our review meeting) said it is not tourettes because his vocal tics do not include swear words. I know through the excellent tourettes action people that swearing is a complete misconception and feel so frustrated at the misinformation out there.

Just wanted to share - so not a question per se- but figure you and your daughter have had similar frustrations over the years with such things!

Best of luck to you both.

DD was diagnosed with Tourette’s at age 14, having had simple tics most of her life and a year of complex verbal and motor tics.

Verbal tics are, or certainly used to be, part of the diagnostic criteria of Tourette’s.

She was wasn’t diagnosed with FND until September or last year, she’s now 18

Functional tics, the type they mean when talking about TikTok contagion, are usually fairly short lived and last a few months. And it’s a bit more complex than developed tics after watching TikTok videos

No, she isn’t medicated. The neurologist felt the side effects of the medication was worse than the tics.

She was offered CBiT and habit reversal therapy but declined it.

Yes!

One of the biggest misconceptions I’ve found is that Tourette’s = swearing.

Only 10% of people with Tourette’s have coprolalia (swearing/inappropriate verbal tics)

That, and people expect DD to tic 24/7 - she doesn’t. Depends what she’s doing. She suppresses tics, some tics are internal, sometimes she’s so completely focussed on something she doesn’t tic. Some people use it as a kind of gotcha that she must be faking if she doesn’t tic for 10 minutes

Thank you for posting this, I am very interested to hear more about yours/DD's experiences.

My question, was PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) ever explored as a potential diagnosis?

There seems to little known about this disease that can present similarly to FND.

Thank you

No, PANDAS was never suggested to us but we have subsequently come across about it.

DD had an EEG to rule out epilepsy, told she had FND, given a link to a website and sent on her way. CAMHS had been dealing with it ever since, although she’s now just too old for CAMHS and adult mental health services are currently arguing that it’s not in their remit and she needs to go back to Neurology.

It’s so frustrating. I belong to a FB group for FND and it’s a reoccurring issue - no one really seems to know what to do with FND

What is FND please? I saw the full name earlier but I mean what is it as in how does it effect her etc?

OP, did you ever read the book The man who mistook his wife for a hat by Oliver Sacks?

One chapter was a case study of a man (one of Sacks's patients, I believe) who had Tourette's Syndrome. The man called himself Witty Ticcy Ray. The case study explored how Ray took medication during the week to control his tics but not at the weekend so he could be his witty ticcy self.

It's a term for people who report neurological symptoms (blindness, weakness, seizures) without anything physically wrong with them. The seizures used to be called pseudoseizures; they aren't real seizures but the patient behaves as though they are having a seizures (shaking, unresponsive etc.). They have a psychological cause.

@Februarystars23 thank you. I have never heard that term but funnily enough working with people with epilepsy for years have actually come across people who have these.
I'm guessing it's a new term?

Yeah it's a new thing. They've renamed pseudoseizures "non epileptic seizures" and FND (functional neurological symptoms) because patients didn't like the old term. But I think it muddies the water and people still think of them as a type of genuine seizure.