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.

Of course she needs a proper diagnosis. Think of the issues this could create for her in school and social situations, a formal diagnosis means accommodations will be made. It may improve, yes, but then again it may become worse.

Getting a diagnosis, not a label, for any conditions is important.

For me the key thing with something like Tourette’s is about understanding yourself and why you react in the way you do. The lack of proper recognition can be a massive barrier later in life for so many

You definitely need a clear diagnosis. I can't believe you would basically 'ignore' esp if other people are commenting.

I have just spoke to my own GP re a tic my son has develeoped in the last couple of weeks

Tourettes can be an indicator of severe anxiety. Mine both had it, but grew out of it with the help of an SSRI. They still have the severe anxiety though because of ASC and ADHD.

A diagnosis isn't a label.

Have you heard of pans/pandas?

With all those immune issues like coeliac, allergies and asthma along with tics, you'd be very wise to look into pans pandas.

@AutumnLeaves21

Of course she needs a proper diagnosis. Think of the issues this could create for her in school and social situations, a formal diagnosis means accommodations will be made. It may improve, yes, but then again it may become worse.

Not necessarily. In fact we recently decided against getting a formal diagnosis for DD.

Have you ever tried cannabis oil? I swear that it was like a miracle, stopped her fairly extreme coprolalia within about ten days.

We had a series of online meetings with CAHMS which we found incredibly helpful. Helped us understand where her anxieties came from, and some really good ways to talk through them with her.

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'.

If you want to know about how to use cannabis oil I'd be happy to PM you. DH did a lot of reading before we figured out what worked.

Sorry meant to add: a diagnosis is not THE way to access support in school. They focus on what the child needs, diagnosis or not, so in DDs case that meant things like letting her draw in class, sitting her near the door if she wanted to leave to tic, giving her mindfulness stuff to work through with a TA, etc.

@BlameItOnTheBlackStar

Sorry meant to add: a diagnosis is not THE way to access support in school. They focus on what the child needs, diagnosis or not, so in DDs case that meant things like letting her draw in class, sitting her near the door if she wanted to leave to tic, giving her mindfulness stuff to work through with a TA, etc.

Thanks for your info @BlameItOnTheBlackStar I am in a similar situation with my DD, I was worried about Tourette’s as there is a vocal and physical element but the tics seem to change all the time, currently triggered by anticipation/anxiety/uncertainty. I have spoken to a teacher specialist in autism who has also seen a lot of NT girls post pandemic with tics. She said to ignore for now… not even sure the school/medical services would want to know - being so stretched and her tics not being too severe/disruptive.

Following this as I'd been wondering the same thing. Can I ask those of you in similar situations how your kids deal with it (regardless of what you call it)? Do they explain it? Do friends react? Does it upset them? My 7 year old's has recently ramped up to a very noticeable level and though I find it quite distressing she seems to be ok. But I've caught her kind of looking around, I think to see if people have noticed, and it makes me so sad.

@taykitty20 my DD hasn't mentioned it herself but I've carefully mentioned it to her, as in "DD, you're going to walk into a wall if you keep looking backwards" or "does it feel better when you roll your eyes back?".

Her friends haven't said anything when I've been with them all, and DD hasn't said they've commented but they may have without me knowing.

My DD certainly doesn't seem bothered if anyone sees.

@BlameItOnTheBlackStar thank you for your experience, it's helpful. DD doesn't seem to have anxiety or particular concerns, so I'm not sure for her if it's anxiety related.

I didn't really think so either tbh, as she's always had some form of tic, throat clearing, blinking, etc. But the constant top-volume swearing was a shock, and I don't think it's a coincidence that it started during lockdown when she lost all of her social networks etc.

It's incredibly common post-lockdown sadly.

We are sooooooo open about it all. Talked about it all the time, and just openly said to her (basically) anyone who gives you a hard time can go fuck themselves. We talked a lot about empathy, and that everyone is dealing with something, it's just that hers is sometimes more visible than others'.

Speaking to her teacher, the head, and the support for learning teacher was essential, and they were fantastic.

@Pawprintpaper I think there's definitely an element of wait and watch with tics; I read that they're most common between 8 and 12, and our experience seems to track with that.

What I'd say helped us was talking and talking. Eventually DD came to the conclusion (well she thinks it was her who concluded it ) was that being outside, being with others, and limiting alone time/screen time in her room was mentally healthy for her. We worked our arses off to treat it like no big deal, and were just very clear that it was a thing we'd just calmly deal with, and that it would pass (while underneath feeling sick when I could hear her swearing all through the house).

I don't think there's any harm
In a formal diagnosis, and tics can get much worse during puberty before calming down. But if you don't feel there's any point in a diagnosis I can understand why you wouldn't bother. There is so little support out there that it won't make any difference to any treatment.

I think there's a big difference between never acknowledging to your DD that she tics and talking about tics specifically, for example asking if she had many tics at school today. The later is more likely to exacerbate the tics, ans the former could leave your DD feeling unsupported.

I think though, if your DD has a diagnosis when she's older she will be more confident to say to people "it's my Tourettes" rather than "it's my complex tic disorder" which people are less likely to understand.

@BlameItOnTheBlackStar Would you be able to pm me how you used the cannabis oil? Do you continue to use it after the tics have calmed down, or is it something you always use? Thanks

Of course @LynetteScavo I'll do it from my laptop tmrw. We haven't used it for ages now actually, although we keep it around. If DD feels a bit 'ticcy' she might take one capsule but I reckon it's just a placebo at this point.

Also interested re the cannabis oil! Thx for responses; I work hard to act like it's no big deal but I don't think I'm doing so well. I find it very difficult to watch and it's also hard not to worry about the future/what tic will come next. I also find it very hard when it seems to surge after a period of calm!

Am I unreasonable to not bother with a formal diagnosis for DD considering it doesn't seem to bother her?

It's a bit 'denial' imo. Not having a diagnosis doesn't change her condition, however having one may hope her navigate her way though life.

with formal diagnosis, you have it in place should you ever need it.

In other words, if it becomes and issue in school, and you need more support from school, it is much easier to get her the ECHP she needs (or perhaps get it added to her ECHP if she has one) if she has a diagnosis.
It is one massive step out of the way.
There will be times when she will need to be accommodated, and it is easier for all if you can say it is official. Especially if that accommodation or support costs money.

Following. I’ll be back tomorrow to read the whole thread. DD is currently waiting for CAHMS

It’s so important, especially for her as she grows. She will not thank you for not pursuing a diagnosis.

I think a diagnosis can certainly be helpful for many individuals...but at the end of the day, with most things and certainly with Tourette, every case is so different. I'm not sure how helpful it is for, say, a teacher to say, oh, ok, Tourettes, look it up, and then assume that'll be the case for that child, instead of that kid's particular set of circumstances being described and then worked with. I'm also being very honest and admitting I don't know how much of that is my discomfort with a diagnosis. Really, I don't know. My daughter knows she has tics, but I've never mentioned tourettes to her.

...to be clear I'm separating out the issue of "pursuing support" with "pursuing diagnosis." I'm aware sometimes you need one for the other.

Op look into PANS x

My DD has recently been diagnosed at 20. She's very angry now that we didn't pursue the diagnosis when she was much younger. I feel like a complete shit and like I let her down.

We all thought she was fine with it, but she was trying to protect us.

BTW OP you use the word 'seems' a lot when talking about your daughter. It sounds like you're really not actually sure how she feels about it. If you don't pursue a diagnosis, at least clarify with her that it's an option rather than making any assumptions about how she really feels.