Tourettes - is a formal diagnosis important?

[PragmaticWench]

DD is coming up to 9 and very clearly has tourettes. I've read a fair bit about the diagnostic criteria and she more than meets it.

She's had multiple tics at any one time since the age of 5, both physical and verbal, plus echolalia. The tics ebb and flow in their intensity, usually very frequent when a new tic develops (say every 20-30 seconds) and she has multiple tics that can run in a sequence, say a shoulder lift then a head twist then an eye roll.

School have now asked about it, plus a number of family and friends and we've just said that everything we've read says not to mention it to DD as that can increase the tic frequency. For me, it's just part of who DD is and so far, she's not seemed bothered by it and her friends haven't mentioned it or picked on her for it.

I'm aware tics can hugely reduce in teenage years, and aside from medication if they're very, very bad then CBT is the only thing you can do if you want to reduce them.

Am I unreasonable to not bother with a formal diagnosis for DD considering it doesn't seem to bother her? She already has allergies, asthma and coeliac disease so has plenty of labels in her life.

I confess that when DS started a couple of years ago I was irritated (and slightly frightened I think as the first tics were really dramatic.... like fits) and kept telling him 'Stop that!' 'Stop doing that!' for about one evening until I realised that this was very very much involuntary.

His tics migrate all ovet his body so he will tell me 'what is new' now.

@RestingStitchFace

If she need additional support for school - you won't get much without a formal diagnosis....

I totally disagree - DDs school were bloody amazing when her tics were at their worst and before she got a diagnosis.

She's very good at suppressing tics, but one did escape recently and she was asked by a random dickhead "Are you a spaz?" She was able to look him in the eye and say "I have Tourette's." Having the diagnoses empowers her to be able to stand up for herself rather than mummle "I tic sometimes"

Need to catch up the thread but just putting out there that I don’t think you even need the kid there for diagnosis—I showed some videos and received a formal letter saying “...consistent with Tourette.” This was privately tho. Whether this would cut it for help at school...probably not...but just to have it in writing my experience was that it can all be done without the child (though my daughter was only 6 at the time)

I agree the diagnosis process is not at all arduous for the child's -the worst bit was the blood test (to rule out other things I think) being weighed and measured and having reflexes tested at the first appointment, which DD didn't mind at all. DD didn't tic once during that appointment. We then had a follow up conversation with a consultant without DD present. I had lots of video footage as evidence, but they weren't really interested in it.

DD didn't tic once either, and it transpired that she thought you weren't supposed to do it in front of the doctor

@Watsername thank you for the book recommendation, I'll look into that!

It's definitely really helped to hear different views, from parents and people with Tourettes themselves. I've realised we do need to talk with DD about it properly and also show her other people in the same boat. I've been looking online at some videos made with children talking about it for themselves.

Obviously the chances are that the tics may increase during teenage years and then reduce after, from what I've read and from people here saying the same. We shall see.

Ways in which getting a diagnosis has helped DD.

Her psychiatrist has helped her realize that other behaviours, which other people were not aware of eg pulling out her eyelashes, are part of her Tourettes.

She is no longer ashamed of her tics, now that she has a deeper understanding of why they happen and the fact that they cannot be controlled.

She feels able to talk more openly with people about her tics and share what she knows about Tourettes, so that people becoming more accepting generally.

She is getting psychotherapy to help come to terms with the harm Tourettes has caused to her mental health.

She gets accommodations at college.

Her meds for other conditions such as ADHD are being adjusted in light of her having Tourettes, so that they don't make it worse.

Next step is occupational therapy, but that would have been more useful when she was a child.

The diagnosis was not difficult to get.

Just to add, getting a diagnosis was easy. I went to the doctor, who made an immediate referral to a paediatric neurologist. We were seen in about 6 weeks and diagnosed on the spot. He did various neurological tests (reflexes etc) and noted the tics he saw in the appointment. We also had some videos on a CDR but I can’t remember if he even looked at those. Diagnosis was based on our retelling of the history of the tics.

You need to have had tics for over a year for diagnosis.

[quote PragmaticWench]@Watsername thank you for the book recommendation, I'll look into that!

It's definitely really helped to hear different views, from parents and people with Tourettes themselves. I've realised we do need to talk with DD about it properly and also show her other people in the same boat. I've been looking online at some videos made with children talking about it for themselves.

Obviously the chances are that the tics may increase during teenage years and then reduce after, from what I've read and from people here saying the same. We shall see.[/quote]
It's great that you are finding out as much info as possible so you can support her. You said above that parenting is hard - it really is! There are a lot of tough decisions to make and sometimes we really don't have good options available either way. Best of luck.

Parenting really is hard. Any tips on dealing with the anxiety of how they'll be treated, what tics will come next, sadness over the whole thing..?

And, I've been bollocked for this on mumsnet in the past, but...any tips on how not to find it really, really annoying?

Any tips on dealing with the anxiety of how they'll be treated, what tics will come next, sadness over the whole thing..?

I decided if DD only spends time with people who care for ans value her, the tics won't matter. I came to this conclusion after sobbing to myself that she wouldn't be able to walk down the aisle when she gets married without ticing. Then I realised if she was getting married she would be surround by people who love her anyway, and it really wouldn't matter. Because if Covid it's been easy for DD to only be with people who care for her. Anyone who isn't kind can get lost. How people react to tics tells you a lot about them. And I do tell people she has Tourette's rather than letting them figure it out for themselves.

I have no idea how not to be annoyed. Sometimes it's impossible for me not to say "stop" and then I know I need to walk away. Obviously that's much more difficult if your child is younger.

Thanks for your honest response. Funny, I had the same thing about walking down the aisle. On good days I think, so many people walk around with Tourettes and have no idea that's what it is, on bad days I think, that's it, life will just suck from now on.

I do wish someone had given me a few choice words to say as a kid--I had eye tics (nothing dramatic, though now I see it's my lovely genetics my daughter has), and I had no idea what to say when people asked. I also had no idea that it was common and figured it was something only I did.

Another one I have been bollocked for but has anyone or their child tried meds?

@taykitty20

And, I've been bollocked for this on mumsnet in the past, but...any tips on how not to find it really, really annoying?

Anyone bollocking you for that hasn't got a child with tics.

Or hasn't got a child with tics and has sensory issues themselves - a position that I'm in.

Either way, you don't deserve anything other than support.

That being said - I wish I knew the answer. I really do.
The tics can be absolutely constant and relentless and 3-4 or more at a time!
I wish I could give advice on how to not let it grate on you life nails down a black board.

I poured all my effort into not showing it.

I said this earlier but if your child has tics, please do look into pans/pandas.

It is an inflammatory condition and taking ibuprofen can reduce tics and/or anxiety (if your child has that too).

@lizkt

I said this earlier but if your child has tics, please do look into pans/pandas.

It is an inflammatory condition and taking ibuprofen can reduce tics and/or anxiety (if your child has that too).

Thanks for that tip. I saw it before but didn't get round to looking into it, so thanks for posting it again.

It doesn't relate to use, almost the opposite in that ours started off very small and got bigger over weeks, months and years and is hereditary.

I've read about Pandas in the past though and sounds very debilitating.

Stupid is a label, weird is a label, naughty is a label. Tourettes syndrome, Coeliac disease etc are diagnoses. It drives me crazy when people muddle the two up.
You can only pretend this isn't a thing for so long. The sooner you talk to her about it - light heartedly, but properly - the better. If it's not a huge deal to you then it won't be for her, but pretending it's not happening is not the way forward IMO.

I think there is a huge difference between pretending it’s not happening and not turning it into a “thing” though?

taykitty20
I think there is a huge difference between pretending it’s not happening and not turning it into a “thing” though?

Exactly this. DD already has lots of names for the conditions that mark her out as different and mean that on a day to day basis she can't do the things that other children take for granted. Obviously she's lucky these are fairly easily managed. She's also lucky at 8 to have friends who don't notice her tics too much. So I'm conscious that the actual diagnosis process might make it 'a thing'. As she gets older it may be more helpful.

We are definitely going to talk about it properly with her though, thanks to the support and advice on this thread. We may well then get a diagnosis.

@Tal45

Stupid is a label, weird is a label, naughty is a label. Tourettes syndrome, Coeliac disease etc are diagnoses. It drives me crazy when people muddle the two up. You can only pretend this isn't a thing for so long. The sooner you talk to her about it - light heartedly, but properly - the better. If it's not a huge deal to you then it won't be for her, but pretending it's not happening is not the way forward IMO.

Thank you this is such a good way to explain that having a diagnosis for a neurological condition is not about labelling.

Tic syndromes, OCD and ADHD are dopamine related disorders so ibuprofen will not help.

My DS saw a child psychologist for his - she offered him a choice of a couple of things they could work on together and they became less pronounced and intrusive. It could have just been that he was getting older and they’d have reduced anyway, but he found it a very positive experience.

We were referred by a very irritated paediatric neurologist after I refused his suggestion of haloperidol.

Big thanks for supportive messages; I'm having quite a hard time with this lately. Hugs to anyone struggling with this--or anything else. Hermione, how old was your son when he was offered that? I've struggled to find anyone who will work with kids younger than 9...

@UhOhOops

Interestingly although we don't have a diagnosis, DD prefers to just says 'it's my Tourette's' if people challenge her. Much easier to say than 'it's my generalised tic/vocal tic disorder which was exacerbated by the anxieties of lockdown and living through a pandemic'.

She's 9 now. It may seem a long way off but before long she'll be sitting GCSEs in a huge hall, rows of desks, lots of stressors that can heighten behaviours like you've described. There is absolutely no chance that it will be tolerated by invigilators, and in many schools without a formal diagnosis she would not be offered special arrangements such as a room on her own, or one with a window. Teachers will question her behaviours in secondary school, and could give her other labels such as disruptive, loud, uncontrolled, which could lead to detentions etc, and (I've seen it happen) the actual disruptive kids will welcome her into their circles with glee.

Once she has a formal diagnosis (as she does for coeliac, asthma etc already) school can straight away put supportive strategies in place.

I agree with this.

also one of dd1's friends had tourettes. Not really a problem in a relatively small primary school, all aware, everyone just treats him as himself.

Then he started secondary.
Because he had a EHCP around his tourettes, they had a meeting with the SENCO before he started and talked about how to let his teachers know and how to handle it in school. All very positive.

Roll on September and every week mum is up at school, every week one of his teachers has handed out detention for him being 'disruptive' in class. When they looked at it, it was his vocal tics, and teachers had just not understood, or been properly made aware of the fact that they were tics.

Mum had really good solid case to stand on, as she had EHCP and SENCO meetings etc and a diagnosis.

If she hadn't had all of those, if it was just 'he has tourettes' I am not honestly sure that her ds would have survived without being excluded. As it was, it took until about November of year 7 before all the staff really got it, and worked out how to have him in class, without sending him out every 5 minutes for detention.

The thing is, at primary, where he was happy and settled, he actually ticked very little. Even in year 6 where they were often expected to work quietly (so more like a secondary classroom). I suspect that the anxiety over fear of being told off, made his tics worse at secondary.

This is why, in the long run, it is helpful to have a diagnosis.