Tourette's

[bishbashboosh]

Is there a thread for support for parents of children with tic disorders? My ds had OCD and generalised anxiety disorder also, which is more stressful than the tics. At the moment he's swimming along brilliantly in his bubble but he still can't leave the house alone or go upstairs alone.

His current school are wonderful bug he moves to secondary school in September.

I'd also like to add that although my ds is on the SEN register, and under CAHMS, I still struggle to see him as special needs, is that strange?

No not at all. I do have experience of special needs but because he appears outwardly to be doing so well

I have two with Tourettes and comorbid diagnoses such as anxiety and OCB.

I struggle a bit to define them as special needs too, as I feel they're lucky enough to cope normally in other ways. And I don't want to feel that I'm overstating their problems
But I think the diagnosis of special needs is broader than one might think initially.

And my children do need special attention. It's so painful at times to see them suffer. I'm so fed up with people just saying how well they're doing educationally, because the pair of them have severe Tourettes and hide it well in public.

I realise this thread may have died, but I would find a support thread helpful.

I also have a 7 yr dd with Tourette's and her tics are so bad at the moment and anxiety levels high.
She is bothered by some of them so much it makes her cry.
A support group would be great.

Is your DD on any medication - for tics or anxiety?
My two have both been helped by meds. I don't think they could cope without them.

It must be hard for both of you- to be 7 and have severe tics must be difficult to live with. Mine developed it suddenly when they were around 12 and it's been hard, but I feel at least they were lucky to be a bit older.

No she doesn't have medication .
She was diagnosed last September but started with tics since about 3 yrs old.
She was under camhs waiting for ados, as my older brother and sister have three children each all on the spectrum and all diagnosed apart from one. ( who's just started uni and been pulled aside for concerns )
Anyway my daughter scored low on ADOS so they ruled out autism and said bye!
I went back a year later as they promised to re assess. They denied this and referred us to a movement specialist who diagnosed TS in less than half an hour. Relief and gutted rolled into one...

Me and school also suspect PDA
Her anxieties are so high. Her tics seem to spiral out of control lately and she's so upset about it. She is trying so hard to suppress at school as she said people think she's weird :-(

So when she comes home she has a few vocal ones ( loud random shouts sounds) and so many body jerks, eye rolls facial grimaces
She does one with her mouth/ lips so all her skin around her mouth is bright red. She them gets so embarrassed and doesn't want to go to school and be seen.. Just exhausting for her and us

The consultant at the time of dx said he doesn't really medicate as the side effects can be worse than the tics themselves
I have no idea about this

What does the medication do for you?
Do you think she would benefit?
What sort of time/ situation do they take it for or is it a daily thing?
Sorry for rambling on.

When both mine suddenly started to have Tourettes, the were both awful. It was about a year apart, and whilst it's usually a random illness, in our family we've been diagnosed as having Familial Tourettes.

I am so thankful for the medication. It reduces the number and frequency of their tics, in higher doses it can help with anxiety. They're both on Risperidone - which I think there is most evidence for. My DS is also on low dose Prozac for anxiety. Other drugs are used for tics - Clonidine, and Aripriprazole. There's less evidence for Aripriprazole - but it seems to have less side effects than Risperidone.

Risperidone's side effects are weight gain, sleepiness, Parkinson type symptoms. Risk of Tardive Dyskinesia - google it - on high dose & used long term,. Can affect bone mineralisation, can delay periods

I've found Drs have different attitudes to using meds. My DD is 14 & her Dr is keen to optimise her control. My DS's Dr is much less keen to increase his meds. My DS is suffering a lot with anxiety and agitation - I'd like his meds to increase slightly.

I understand why your Consultant is not keen, but if her tics are affecting her quality of life then I would push for consideration of them. There are Tourettes Support groups which may advise you.

It's important the school realise she's suppressing tics - because that is exhausting. Educating other children, teachers and parents is worthwhile too.

I should have said, neither of mine have had side effects to Risperidone. My DD's Prolactin is high because of it - so she's to have a bone scan. Her Consultant would like her to switch to Aripriprazole

My DS has had no problems with Prozac, however my DD reacted very badly to Sertraline- also for anxiety. Her tics deteriorated severely at that time.

Hello, joining in conversation late....not been around for a bit.

I have 2 with TS:
DS1 (9) mild TS and co-morbid OCD traits. AS traits (just under dx criteria). SpLD in Spelling, writing and fine-motor control. SA+ (for SpLD).
DS2 (6) TS, co-morbid OCD traits.

Both are quite mild at the moment, but go through more severe phases. No medication.

DS1 has been very hard work, up and down emotionally - we describe him as Jekyll and Hyde, but he appears to be getting more stable as he gets older.
DS2 is very stubborn and impulsive, and is acting up a bit, much worse in the last six months or so.

My father has TS and DH probably would have been dx with it as a child, though only has mild motor tics now. DMIL also has tics. We have it strongly on both sides, so I suppose it was inevitable my two would get it.

Hi
I hope this gets off the ground

I find people - including my immediate family - just don't understand / believe how ill the children actually are. Because they tend to look normal in public. Consequently I've had things like my mum telling me 'I'm difficult' for looking for any emotional support. I'm pretty independent and cope ok with this now, but wondered if it was a common experience

Also my DS copes well enough in school - but by evening is agitated and can't seem to settle to anything. Any ideas? I've told him he needs to take breaks during the school day & not to constantly suppress tics. I think he's just exhausted, and doesn't know what to do with himself