How should we decide whether to try and get DS a diagnosis of Tourettes?

[MamaChocoholic]

DS2 (nearly 8) has had various tics for some years, normally one verbal and one physical at a time, but they change from time to time.

Now the school referred him for speech therapy because the verbal tic, a "nnn" sound, can get in the way of reading aloud. Speech therapy said it is not stammering because it happens between words, and is an involuntary tic disorder, Tourettes (but stressed outside their expertise for definite diagnosis).

School would like us to go to GP for a diagnosis. But- DS2 is fine. We are fine. Tics are mild, do not interfere with his school work other than slowing speech, and do not interfere so far with making friends. He does not appear to have any comorbid condition.

So- taking him to the GP would make it an issue for DS2, when currently it is not. We are reluctant to do that.

Are there any benefits from a diagnosis? From what I have read, there is no cure, tics may get better as he gets older, and could get worse if we make a big deal of it. School have said they think while his classmates are currently unaware, as they get older they will tease him and so he needs to have information/strategies ahead of that.

It's possible he has both, or at least a mix of both neurodiversity isn't exactly exact.
You obviously realise a GP will not diagnose and he will need to see various others in order to narrow down what they think he has.

Thanks, yes I realise that any diagnosis may or may not be tic disorder, or something else. Also, I'm aware the GP could be only the first step.

I'm interested to know what benefits there might be to getting a diagnosis.

I'd be really interested to hear people's experiences after getting a diagnosis of a tic disorder (since tics are the only symptom DS2 has), did the diagnosis help? In what way?

I believe (based on a survey of one child and some associated background reading) that tic type disorders can worsen at puberty, which is when some potential co-morbids can flare (in our case, OCD, but anxiety disorders in general). Our study of one child showed mild tic disorder (single verbal tic - a throat noise) which progressed from not interfering with anything (and just causing mild annoyance to listeners) to full blown OCD. Would it have happened if we had attempted to seek diagnosis of the original symptoms? Maybe. We’d have been better placed to recognize some of the other softer symptoms before the OCD kicked in fully I think.

My ds is now 12 and diagnosed with tourettes 3yrs ago by a psychiatrist in CAMHS. At the time his tics were much more pronounced hence the need for a referral.
Over the past 2 yrs he has learned to control his tics or suppress then while in public and let loose then when hes at home.
Otherwise the diagnosis has made no difference to his or our lives. Luckily his tics are a lot less although now i feel guilty because he has this diagnosis that will be attached to him for life.
Sorry im not much help but just think about what a diagnosis will do for your son long term.

Both my boys have been dx with Tourettes. The GP referred to peadiatric neurology at a neighbouring hospital. Dx was very simple and not a big deal at all. In fact you don't even need to take your child to the initial GP appt, you could just take some videos.

For us I wanted a dx as the intensity of the tics was worrying with over 10,000 movements and noises a day. I was much happier it was tourettes than something sinister.

Actually, both boys have improved over time and the intensity of the tics has waned in both. The 'label' drops if they no longer meet the dx criteria.

In fact, it's been very useful having the 'label' because teachers know not to tell them off for the noises - otherwise they would forever be being told off for disturbing people.

Additionally, many other conditions can come along with TS, eg OCD, ADHD, rage, and understanding where these tendencies come from has been useful for us as a family.