I'm new here...Tic reversal/suppression t... - Tourettes Action

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I'm new here...Tic reversal/suppression therapy success?

bedacleave profile image
8 Replies

My 12 yr old son has just been diagnosed with Tourette's. He has vocal and physical tics (mostly facial). We were offered medication but son doesn't want this. CAMHS are not really offering us anything except group anxiety work but privately we are looking to fund clinical psychologist who will try TIC reversal therapy and TIC suppression. Does anyone know if this has been successful before/previous experience? It's expensive so don't want to waste money. Also trying to build self confidence with counsellor.

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bedacleave
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8 Replies
Lalala profile image
Lalala

My daughter has Tourette’s and tried tic suppression under the NHS. It actually made things worse because she was concentrating so much on suppressing one particular neck cracking tic - that all sorts of other tics came out. The Doctor we were seeing rubbished what I had observed- but another Dr agreed with me

Having said that, what works for one kid with Tourette’s doesn’t work for another. I have two with Tourette’s and their response to therapy - drugs in particular- is very different. The options they have been offered for treatment are also very very different. No one has offered my son tic suppression therapy - and he might well make use of it.

Try it, with an open mind, but don’t pursue it if it’s not working. Tourette’s is a neurological illness, not a psychological one. In my humble opinion. Good luck.

bedacleave profile image
bedacleave in reply toLalala

Thank you Lalala for your reply. Who did you go to to get a referral for this through NHS? Nobody has offered this to us other than paying for it privately

Lalala profile image
Lalala in reply tobedacleave

It was just her Consultant at the time. Another Consultant was locuming in the area, and was specialising in the therapy. The second Dr was a bit of a pain.

Where do you live? I think it comes down to luck of whose available

The thing is tics have to come from somewhere in their brain. They might be able to suppress one or two - it’s worth knowing the theory - but they are always going to need to tic. It’s not any kind of cure (in my view).

bedacleave profile image
bedacleave in reply toLalala

We live in Warwickshire. I'm going to try to find a local support group who I contact.

Lalala profile image
Lalala in reply tobedacleave

That’s a good idea

We’re in Scotland. My two kids have had very different experiences with the NHS. Could be worth asking if different Consultants in the hospital offer different services. Tourette’s Action seems a good service

Hi We have lots of information on our website about behavioural therapy which you can read here: tourettes-action.org.uk/71-... If you contact the Tourettes Action helpdesk we will be able to send you a list of behavioural therapists (a mixture of NHS and private practitioners) who you can contact directly to discuss your situation and how you might get a referral. You can contact the helpdesk on 0300 777 8427 or help@tourettes-action.org.uk

Coljacko1 profile image
Coljacko1

So sorry but this is not my field of expertise, so a unable to help you. I do how ever wish you all the very best in your journey to finding help.

Colinx

Skins profile image
Skins

Try here, Sasha was amazing!

sashahvidsten.com

Hope you get the support you need in a time that I remember when I also didn't know where to turn, good luck!

Xx

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