Any neurologists out there that can help with a potential Tourette's query?

[Anxiousmumpleasehelp]

I'm wondering if anyone can offer any reliable advice as I feel like there's a lack of clarity given by Dr Google!

I'm aware that for a child to be diagnosed with Tourette's that multiple motor tics and at least one vocal tic must have been present for a year.

My question is, what if these tics only last for a couple of weeks with a gap of around four months with absolutely nothing before a slightly different one starts? Would that qualify as Tourette's if that on/off with gaps of four months spans a year, or is Tourette's when it's more persistent/consistent across the course of the year?

95% of 'tics' are when watching tv only! And not sure if they're actually tics or just habits!

I'm feeling really really anxious about this so any well informed advice would be really appreciated! Thank you x

I don’t have an answer but was wondering this precise thing the other day so place marking in case someone more knowledgeable comes along!

Our DC has had a few different tics on and off for the past couple of years but there are months when they don’t have any and then suddenly they reappear- not all at the same time though. Usually just one or two. Usually when they’re tired.

It’s worrying for sure but I have read on here and on the NHS website that they are common and usually fade.

My 10 year old DS has Tourette’s. He constantly has 2 or 3 tics. They sometimes stop and a new one will start but he ALWAYS has something.

Don't know but my ADHD child has always had a tic of some sort of other, lasts a few weeks months before being replaced with a new one. Not uncommon with ASD/ADHD and I'm unsure whether it would qualify as a separate diagnosis of tourettes, I always assumed it was part of a bigger picture. Sorry for the digression.

no that would not be diagnosed as Tourettes. Tics in children are very common, and usually come and go. How old is your child?

Thank you @PippetyPoppetyPie @Thepurplecar x

@Trillio she's 5 and I wasn't worried at all as like you say I'm aware that they're common in childhood and given they only last a couple of weeks each time I didn't think much of it, however after reading a bit more about Tourette's and reading that tics need to be present for a year and that this can involve them coming and going it made me wonder does that mean she would meet the criteria as it will have soon spanned a year!!!! X

Lots of children have tics (I did) and for a diagnosis they have to be multiple, persistent and disruptive.

DS2 's occasional tics snowballed during the delightful combination of puberty and the pandemic and he has been disgnosed with tourettes. He's only not ticcing when he' s asleep and for the odd moment when he's absorbed in something. The tics really are a nuisance for him - one of his regular ones is a snort and he's as likely to do it with a mouthful of food as at any other time, so we have to supervise him eating. He's severely autistic so it's a tricky combination for all of us.

I have a young relative who also has a diagnosis and, while she can keep the lid on her tics around people, she struggles around Ds2 because his tics trigger hers and she has some classically sweary ones.

@PickAChew thank you for sharing your story x that sounds incredibly tough for all of you xx

Tourette’s is particularly severe. My son was diagnosed with tic syndrome, but always had at least one tic present. He feels he doesn’t have them any more (he’s 18 now).

My ds has Tourette’s and also shows signs of adhd/aspergers. He’s fine at school though so we don’t have a separate asd diagnosis.
The neurologist said they go hand in hand and if you have Tourette’s there is usually a form of autism there too even if it’s very high functioning.

Information (not necessarily directed at you, just for everyone):

Tourettes is not necessarily a severe form of a tic disorder. All it means that someone has had at least 2 motor tics and at least 1 vocal tic for 12 months or more, though not necessarily at the same time.

whereas a tic disorder, is usually diagnosed when someone just has motor tics or just vocal tics.

Tourretes vs a tic disorder diagnosis does not indicate severity. Someone with just motor tics, may have much more frequent and violent tics than someone with Tourette’s who has motor and vocal tics. And the severity can vary over time, so someone may have 4 months of more severe tics and then 2 months of less severe tics, all these times vary.

also, op, you say there are spans of time with no tics at all. Not to worry you in any way but there are many tics that are not ‘visible’ or very subtle; ie clenching of particular muscles, so could be in the toes, or the wrist or pretty much anything. Equally there may not be any at all for spans. I believe for it to be Tourette’s the tics must be present for more than a year with no break of more than 3 months at a time.

So could be transient tics, that are there for a bit and go and then after a while another appears again, and the cycle continues. Transient tics do not necessarily mean they will develop into Tourette’s or another tic disorder, but equally it could be the start of Tourette’s or another tic disorder. Often Tourette’s starts slowly around the ages 2-14 but average ish of about 6 years old. It can also come on suddenly.

i would get a gp appointment maybe if you haven’t already, and monitor at the same time. It’s often recommended to film the tics to show to the doctor, as a lot of the time doctors can be very dismissive of diagnosed tics, let alone undiagnosed or potential tics.

It is natural for you to be anxious. My 11 year old has just received a diagnosis after developing tics aged 6. I monitored this on my own and supported her until it got to the point she asked me to do something to help. I initially had a phone consultation with GP, who felt there was enough information for a referral (there would not have been this level of information in early primary). You could take the small step of a GP appointment first and relay your worry. Depending on the age of your child and symptoms they may ask you to monitor things or refer for further investigation.

Someone has said above it is usually links with autism. Although there is a definite link, Tourette's (or Vocal and Motor Tic disorder) can exist entirely on its own. I am in my 40s and was given an unofficial diagnosis during my daughter's assessment. I don't have autism and neither does my daughter. The clinician will investigate this as a possibility as part of the process of diagnosis (or at least my daughter's did).

Tics are annoying, frustrating and upsetting at times. They are sometimes painful depending on the tic and severity (e.g. repeated head or limb movements - I just took paracetamol!), but they are generally not harmful and, themselves do not impact on other areas of life. I managed well in school, have a successful career, fab friends and a lovely family. Late primary to early secondary was tough because I thought I was abnormal and was an easy target from certain peers (but they were the ones that were horrible to everyone!). From my late teens, I developed strategies on my own to manage this and accepted this was part of me. My daughter will have a much better experience than I did with much more support and understanding. She is excelling in certain areas, her school and class are supportive and I have no other worries about her apart from her tics (and guilt because I have passed this on to her.)
Best advice - ignore it unless your child wants to discuss it, find activities to distract and relax (although when relaxed can be peak tic time along with tiredness and stress) and shower with love, which I'm sure you're doing already. Sending hugs (and apologies for the long post!)xx

Thank you @Cleaningismycardio and @123dogdog for your detailed and kind responses xxx

Is he medicated? My DD16 had tics on and off as a younger child, and they all but went during the pandemic, thought that was it but they returned and she had one big tic attack where I honestly thought she was drunk! She would have been 12 then, she usually only has motor tics unless it's really stressful time but since being medicated with clonidine hydrochloride the tics are so much better - they do flare up or can tell if she's forgotten her morning meds, but so much better on medication

He is. First we tried him with sertraline to manage anxiety but that made no difference to him in any way. He's now taking risperidone. We're seeing fewer motor tics on that and his day to day vocal tics are less angry ones, though we still have some hellish days eg boxing day when he said Arriva arriva arriva non stop all day because we had no buses (one of his interests involves tracking buses on a map and waiting for them to pass the house) but it's been highly beneficial in terms of concentration and engagement. He's even stopped soiling himself. The downside is that his obsessiveness is far more intense but "go and annoy your dad" seems to cover most of that 😂

Can I ask how people got a referral to a neurologist . Was it through camhs? 😘

It was for us. CAMHS were dealing with him but we're unable to push out of their usual remit with potential medication when it became clear that trying to treat his anxiety was getting us nowhere.

Thanks for your response. So did camhs then refer him to the neurologist? I just think the mental health route is the wrong pathway. The NHS are terrible with tics

DD (autistic) had a tic come on gradually, then it was really bad for a week then 'Poof' it disappeared as quickly as it came, it reappears occasionally when she is stressed.

Initially I got her a doctor's appointment to get it in her notes and to start the 'year' Clock and to get a blood test to rule out any nutrients deficiencys. She was fine, just good ol' stress

Yes. CAMHS was the first port of call because, well, autistic, and it was an easy self referral (made by his teacher, at this point)

Of, course, while the intention was to be joint care, hsi CAMHS doc left and the patronising git that took over couldn't drop him fast enough.

CAMHS for us too, then referral to their CAMHS specialist nurse in the children's psychiatric team for more support alongside consultants