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.

@PragmaticWench

*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.

I am not sure if this helps, but my 12 year old also has great friends, and frankly his class as a whole just accept his tics. There was a new child at the start of the year who copied his tic as a mocking thing and he got thoroughly jumped on by the other class members who told him 'He can't help it so stop it'.

DS told us this perfectly matter of factly. He assumed his friends / class mates would support him. (which surprised me as he ahs been bullied in the past for other things- not being sporty mainly).

Following as I’m interested in this.

My 8yo DD has had tics on and off for just over three years. Vocal and motor and what they are changes every now and again There have been times when she has them for a month and they suddenly disappear and other times when she’s had them for longer. She went over a year without having any last year but they returned a few months back.

We haven’t sought help because they don’t cause problems or interfere with her day to day life - we have just followed the advice on the NHS site. Her classmates have accepted them and If anyone new asks about them she tells them she has tics. If she were unhappy I’d consider it, but she’s a happy, confident child.

I’m not sure about getting a diagnosis this early on because the NHS site says that they’re common in childhood and usually improve after puberty.

@taykitty20

I’m struggling to remember now. I think he was about 8?

Thanks Hemione. How's everyone doing? I'm struggling with it all.