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.

I think it used to be called Conversion Therapy or something similar.

It been explained to us as if you think of your brain as a computer - the hardware - DD’s brain, is fine, however, the software has gone a bit funky - so the messages it sends and received are a bit awry.

She does have seizures and had an EEG to rule out epilepsy, but they appear like epileptic seizures - for DD they range from absent seizures to full blown, what we expect a “fit” to look like. They are very “real” and it’s offensive to suggest otherwise, but they are not epileptic

She also has a load of other stuff going on - muscle spasms which leave her hands/feet/knees locked, temporary paralysis, extreme fatigue, foggy brain, nausea when eating, etc.

DD’s neurologist has suggested that FND can start as a result of some kind of trauma that her brain just couldn’t cope with. She had severe mental health issues in the summer of 2020 - she ended up with panic attacks, agoraphobia.

They don’t like calling it psychological as it can suggest that it is something that DD can control, when it’s absolutely not.

Because they are “genuine” seizures. They are just not epileptic seizures

They're not genuine seizures because they're not due to inappropriate electrical activity in the brain. It is essential to differentiate them because seizures can be life-threatening and status epilepticus needs urgent medical treatment.

@Tourettesmum123
Thank you for the reply. I hope I didn't offend you or your daughter. No if they are showing on an EEG they are clearly not something she can control!
It actually is different from what I had experience of from your reply so thank you for teaching me something new.

You didn’t offend me!

Her seizures did not up show on an EEG, so epilepsy was ruled out. To an onlooker they do look exactly the same though

Which is why they are known as non-epileptic seizures.

Pseudo seizures or saying they not “genuine” seizures implies that what they are experiencing is not real or put on. It’s unhelpful.

It isn't consciously put on, but they fulfil a subconscious need.

@Februarystars23 I am not sure what you are trying to achieve. First you suggest that the OPs DD's tourettes might be because of social contagion- now you are insisting that the seizures are essentially all in her head- or the physical manifestation of that. Is there actually any purpose to insisting that the confirmed diagnoses by the professionals involved in the care of the OPs DD are probably barking up the wrong tree?

I'm not getting what your aim is tbh.

Thanks for the reply, my Ds school have told me they would like to assess him for dyspraxia too. I've been told there isn't much that can be done with the tics apart from just 'wait and see'

Do you know much about the wrist device to control Tourette's that is going through the clinical trials? (I just read about it in the news last year)

Thanks for the thread. It’s really interesting. My DS has tics but we were told it’s not Tourettes. Best wishes to your daughter.

@shell856 No, I don’t know much about the wrist band. DD originally signed up to take part in the trial but when the time came she declined.

From what I understand, I think it intercepts the premonitory urge with electrical pulses, but I don’t really know

@ItsJustNotWorking it happens all the time to be honest. I hadn’t noticed it was the same poster as the viral TikTok post. People seem to want to insist it’s all in her head all the time.

She has been diagnosed by qualified, experienced medical professionals who have seen her test results, have been party to her medical history.

DD still has to live under as if she has epilepsy - she’s not allowed to apply for a driving licence, etc

@Florissant sorry, I missed your post earlier - I’ll have to look the book up. DD has named her Tourette’s as well

I'm finding this thread fascinating.
I myself have Tourette's and was diagnosed age 23.
I literally received the diagnosis and nothing else.
No meds, no support, no information...just told I had it by a psychiatrist and off I went.
I find when I speak to other people who have it/have children with it, I learn so much that I don't know about my own condition.

My tics tend to be worst when I'm tired, excited, stressed or have had a drink (or two).
I can suppress them to a point but it's like trying to hold back a blink.
They've calmed down as I've got older - they used to be quite aggressive and I'd often lose my voice, bruise myself etc I have scar tissue from a tic I had over the course of a few years where I'd scratch the same point on my chest.
My tics are cyclical. I'll have some for a few months and then they'll fade and I'll develop others, I'll have them for a while and then the old ones come back.

@SouperNoodle it is quite mad how levels of support vary in different areas, or even within the same area.

DD used to attend a Tourette’s support group pre-covid and even within our area support was very different depending on your GP surgery, which paediatrician you were referred to and which paediatric neurologist they then referred you onto. We were lucky and DD has been well supported

This was all pre-covid, with the FND which is since covid we’ve been pretty much left to our own decides. We were given her diagnosis, a link to a website and discharged.

Luckily she was already seeing CAMHS so was able to work with them after she received her FND diagnosis and I have to say, they’ve been amazing.

It’s such a shame that not everyone has the same level of support.

I'm so glad your dd has a wonderful team of people supporting her. It really does make all the difference.

When I was a child/teen, my parents always thought Tourette's was just where people swear so had no idea that my tics were anything but a 'nervous habit'.
I never understood why I couldn't stop myself from doing them and was permanently embarrassed and teased because of them.

I think had I had the support and understanding your DD has had from yourself and medical professionals, things would've been very different (in a good way).

My only question is that has anyone found any treatment, therapy, medication that helps Tourette’s so people that have the condition can live a relative normal life? And what are the personality trails. I have a sister who has Tourette’s. I think it started in puberty, not to the point of shouting or swearing but definitely lots of tics, I think she also has attention deficit. She is 50 now and her tics have reduced a bit but the condition still impacts her. She grew up in a developing country so no much support or knowledge of the condition; she has been able to study and work without much support; but I feel it has been hard for her, perhaps having to do double effort than someone without the condition. I think it still impacts her and the enjoyment of life; I feel she lucks motivation and positivity. It is impacting her more now that she is older and finding it more difficult to get a job. She has an adult daughter bur has not had a partner.

I just want to know what helps with the condition. It seems medicine has not advanced much on this.

You are wrong. FND seizures are real, non-epileptic does not mean not real. Yes, they have different medical causes to epileptic seizures, and as far as we know don't cause damage in the same way as epileptic seizures, but that does not mean that they are not real seizures. They are a different type of seizure.
FND is also not considered a psychiatric condition anymore, and advances are being made with a new type of MRI that can see the differences in FND brains. The cause is not necessarily psychological. It is certainly not subconsciously filling some unmet, unspecified psychological need.
There is very clearly something physically wrong with someone experiencing FND symptoms. Just because it cannot be seen on standard tests, does not mean that we are not really physically ill.
People with functional disorders (ME, fibromyalgia, FND), especially women, have been told for centuries that our conditions are merely due to out of control emotions. This kind of argument is no further on than dismissing us as hysterical women. Our pain and our symptoms are real.
Also, if it were a mental illness, that still doesn't mean it isn't real - mental illnesses are real, debilitating conditions as well.
This is all stuff my neurologist told me upon diagnosing me with FND.
Please stop spreading misinformation.

Sorry for going off on one OP, it frustrates me to read that kind of rubbish as I'm sure it frustrates your DD!

Hi im looking for advice really.. my 7 year old daughter has ADHD and over the last year or so had been doing random things which until recently i was not aware that they where tics. it started clearing her throat constantly, then sniffing out really hard every couple of minutes for months, now the past 3 months shes been doing a jolt with her head which has recently moved down to what i can describe as a full body (abdomen) twitch/jump. We have seen the doctors an they said yes it is a tic disorder, we are waiting to see a specialist about it but she said to me that its hurting her, she tries not to do it and its painful. Is this tourettes or would it be a different kind of tic disorder? i think its been about a year an a half now that iv noticed things happening but the past 2-3 months have been the most intense / movement kind of tics.
Can i do anything to help her or comfort her with how shes feeling ? iv researched but sometimes other peoples personal experiences are better and know more. thanks in advance

Hi, I know this is an old thread, but I wondered how your daughter is now? My son is 7 and has tics.

I have a friend whose daughter has Tourettes .
I have been out with them, and she has come out with tics that have been nasty things about people passing by... usually about their physical appearance. I have been assured that it does not mean that they are thinking such things about the people passing them... Is this true?
TBH if someone called me a fat bitch when I was walking past, Tourettes or not, I would be really upset.