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 have 2 children with it the one who presents worse I haven't bothered to have diagnosed, the other I have as he has severe anxiety and his tics cause him pain. Both of their schools are aware and know it is a sign of anxiety.

Definitely get an assessment. Firstly it's important to be seen by a professional to ensure correct diagnosis. Also there may be a time when dc needs support in school or work. It may be important for dc to know who they are an a diagnosis can be part of that. It may support how you parent. It may give access to services/funding that could be helpful. You may be eligible for benefits which may help. Dc may need support post education.

I think one of my concerns is that the diagnosis process night upset DD, making the tics an issue whereas at the moment they're just part of DD.

However I do see your point @ZZTopGuitarSolo, perhaps ignoring it isn't best for DD.

Parenting can be hard sometimes!

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.

People on here saying "get a diagnoses" have absolutely no experience with Tourette's.

We got a diagnoses for DC1 and it helped zero.

Absolutely nothing. No support, no suggestions, no help, nothing.

This is not unusual. See the Facebook groups, there's nothing you can do.

The only thing the doctor suggested was Phenergan so he could sleep when his tics were preventing him falling sleep.

I gave him half the dose and he was a zombie the next day. Never again.

With DC2, he got tics, it never crossed my mind to get a diagnoses.

DC3 has a 50% chance of getting Tourette's.

Neurological conditions have familial connections, I had OCD between the ages of 7-12 and that is one that is linked.

So the poor gits got my bad genes there.

YOU DONT NEED A DIAGNOSES TO GET SUPPORT FROM SCHOOL.

And that's for anything.

If your school is t supporting a child with extra needs, without a diagnoses, they are a shit school.

Tics are VERY common.

She shouldn't need a diagnoses for teachers to support her/understand.

People on here saying "get a diagnoses" have absolutely no experience with Tourette's.

We got a diagnoses for DC1 and it helped zero.

It might help your DC though. Knowing is important. Having that 'reason' for behaviours does matter. As a neuro diverse adult who wasn't diagnosed until adulthood I can't stress enough the importance of knowing who you are.

It's not all about help in school, because as you go on to say, that is not diagnosis dependent- however when she goes into the workplace, she will need that diagnosis if she is going to need any adjustment.

Definitely get a diagnosis. My brother had it since he was a little boy and the problems can get worse as they get older. With a diagnosis she'll have access to help straight away instead of having to start from scratch when/if you suddenly need it. My brother is in his mid 30s now, and he found it absolutely invaluable to get support and to understand his own illness. He also found it extremely helpful to be connected with other people who have Tourette's too. It can be a very lonely and confusing place to be without that.

It might help your DC though. Knowing is important. Having that 'reason' for behaviours does matter. As a neuro diverse adult who wasn't diagnosed until adulthood I can't stress enough the importance of knowing who you are.

A conversation can do that.

"You have tics. They are really common. You probably have Tourette's, given the criteria for diagnoses. But unfortunately there's no medications or exercises that can help.
There are lots of groups, and online forums for support though."

How does a diagnoses improve any of the above?

It doesn't.

@ItsAllAboutTheLighting

It might help your DC though. Knowing is important. Having that 'reason' for behaviours does matter. As a neuro diverse adult who wasn't diagnosed until adulthood I can't stress enough the importance of knowing who you are.

A conversation can do that.

"You have tics. They are really common. You probably have Tourette's, given the criteria for diagnoses. But unfortunately there's no medications or exercises that can help.
There are lots of groups, and online forums for support though."

How does a diagnoses improve any of the above?

It doesn't.

I'm glad you think it's so easy.

I'm glad you think it's so easy.

The conversation?

That's easy. The route for diagnoses that will take an age thanks to Covid?
Not easy.

Coping with Tourette's? That can be physically and mentally painful.

I'm not sure which one you're alluding to but we have been through all of what I've described.

A conversation isn’t the same at all, it may be when younger but for many neurodiverse people who don’t receive a diagnosis that creates a whole host of other problems and unhealthy coping methods.

I really do not see how a doctor saying the same words makes any difference at all.

It didnt for us.

It's not worth the paper it's written on.

But I guess some adults might need that validation.

I would agree if it was ASD, ADHD, Dyslexia etc.

But Tourette's? Makes no difference.

Well for a start in a workplace a formal diagnosis will help much more than “my mummy says” when it comes to looking at reasonable adjustments

@Sirzy

Well for a start in a workplace a formal diagnosis will help much more than “my mummy says” when it comes to looking at reasonable adjustments

I think the tic themselves will show employees that they don't have to rely on "what mummy says".

I would say the diagnosis is less important then the help and support you can get. As others have mentioned, still sadly, in a lot of places with a diagnosis you will be told to just get on with it, but a couple of big hospitals/children hospitals do have Tics and Tourette’s services (Evelina and GOSH in London for example). So I would say yes push for a diagnosis but push for a referral to a proper Tics and Tourette’s service (be warned the wait list will be long).

As others have said, it might not be a “problem” now, but it could be later and I would say better be proactive then reactive - particularly when wait lists will be horrendous.

@ItsAllAboutTheLighting

Your sarcasm doesn't make your posts correct.

@ItsAllAboutTheLighting

I really do not see how a doctor saying the same words makes any difference at all.

It didnt for us.

It's not worth the paper it's written on.

But I guess some adults might need that validation.

I would agree if it was ASD, ADHD, Dyslexia etc.

But Tourette's? Makes no difference.

How old is your DC?

I can kind of understand your thinking. DD1 has likely ASD and DS has been diagnosed with ASD. When we suggested to DD about diagnosis she wasn’t at all interested and at 16 that is reasonable for her to have a say. When you are on top of knowing what is going on and so long as schools etc accept the issues there isn’t much else.

[quote Eltonsglasses]@ItsAllAboutTheLighting

Your sarcasm doesn't make your posts correct.

[/quote]
I haven't been sarcastic once on here.

Op- if you have not already checked this out, this is a great resource.

www.tourettes-action.org.uk/

(DS aged 12more than meets the clinical criteria for Tourettes but the paed is waiting another year before formally diagnosing it and currently just calls it 'paediatric tic syndrome'. )

FWIW DS also has a range of diagnoses. We are perfectly open about the tourettes because clearly he knows he tics! We left some of the other diagnoses such as ASD for when he was old enough to understand it.

I haven't been sarcastic once on here.

Sorry I misread

Also we talk about his tics. I ask him if they hurt (they look painful sometimes depending how it is manifesting). he describes it like when you need to vomit and you have no control over your reflexes.

Parenting is hard for sure sometimes.

@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.

Actually she's 12 and I don't really recognise what you're describing. She is very very supported by her school and I don't doubt they're taking a child-centred approach instead of a diagnosis approach.

My friends 3 children all have Tourette's as part of wider disorders and in their case a statement was absolutely required. But I honestly believe that DD's tics are more discrete and situational with no other needs, and so we're fine with the choice we made, through a number of decisions with CAHMS over the course of 6-8 months.

@ItsAllAboutTheLighting

I'm glad you think it's so easy.

The conversation?

That's easy. The route for diagnoses that will take an age thanks to Covid?
Not easy.

Coping with Tourette's? That can be physically and mentally painful.

I'm not sure which one you're alluding to but we have been through all of what I've described.

I agree with much of what you're saying. As I say we've never shied away from discussing it with DD and have always said 'you might have it, you might not, it makes no difference at all to the people in your life who are important to you'.

Not sure why this is turning in to a touchy debate, it's not 100% black and white.