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Tourette's syndrome

(10 Posts)
Rosesarebeautiful Tue 15-Oct-13 19:53:01

I have two kids with Tourettes, and whilst they and we as a family are doing ok, there really isn't a lot of support for this complex illness.

I sometimes see comments on mumsnet from people with newly diagnosed children and they're looking for advice - wondering how to cope and how to look after their child

So I just wanted to see if starting a thread where parents and adult sufferers could chip in with ideas of what works for their family. Anything - medication, therapy, hobbies....

mrsbaffled Mon 23-Dec-13 19:29:50

Hello. Just seen this. You might be better off posting in Special Needs : Children. There are a few of us over there with TS in the family x
Also have you found the Tourette's Action website? There were a few events nationally recently, though we didn't get to any of them.

HermioneWeasley Mon 23-Dec-13 19:34:35

My DS has a tic disorder. Paediatrician didn't think it was full blown Tourettes, but I'm not sure at what point on the spectrum it becomes Tourette's.

mrsbaffled Mon 23-Dec-13 22:09:57

As I understand it a tic disorder becomes TS when motor tics have been present for at least 12 months and there is at least one verbal tic.

My DS2 was dx with TS at Easter this year. He was 5. We are waiting to see a neurologist about DS1(9). His motor tics have been present for well over a year and have just got a lot more obvious (end of term stress, probably). I am not certain he has TS. He has always made noises. But I am not certain they are tics, or sensory stims (he is borderline Aspergers), possibly echolalia/palalalia?

mrsbaffled Mon 23-Dec-13 22:11:52

(Hermione, we were sent to see a neurologist out of county as local paediatricians have no experience/expertise in tic disorders)

HermioneWeasley Tue 24-Dec-13 11:39:10

I was promised a psychologist referral as in certain states (when he's in 'flow', when he's singing) he has no tics and I'd like to see if there's a way for him to "access" those states as the verbal tics frustrate him when very pronounced.

MrsBaffled - what input have you had from the neurologist? Any treatment or insights?

bishbashboosh Tue 24-Dec-13 15:48:21

Sorry I don't have any experience of adults but my ds has Tourette's.

He's doing ok at the moment in that he is living with it well. He's having cbt for severe anxiety and phobias.

I worry terribly about when he goes to secondary school. He also suffers OCD. On a bad day he knows there are people in the house wanting to kill him. On a good day he can just about go to the kitchen on his own to get a drink.

I'm battling for support from school.

It's hard

He's truly lovely, insightful, sensitive

A dream son really

bishbashboosh Tue 24-Dec-13 15:50:24

I forgot to say it is very obvious hE has the tics and getting worse as he gets older, but easier to manage, he's 10.

It doesn't stop when he is acting singing or doing sport

mrsbaffled Tue 24-Dec-13 21:58:53

We have had nothing but a dx from the neurologist. It took 3 months from seeing the GP to the neuro appt. DS2 was dx there and then, as his symptoms are classic and we have TS in the family (my DF is dx, and DH is undx).
Fortunately DS2's tics are fairly mild at the moment. Very few people actually notice, but see it as soon as I point it out. He tics in small ways all the time (mostly facial).
The neuro said it was important to get the dx so that we can access help as and when we need it in the future eg a referral back to him if he needs Meds for severe tics, or a CBT referral for comorbid OCD. He said it will probably be the OCD that causes issues, rather than the tics.

We are currently waiting to see the same neuro for DS1. School want him to provide some documentary evidence in case we need to apply for extra time in 11+ and SAts which are coming up next year.

likeamum Wed 12-Mar-14 11:45:59

My DS has fairly recently had TS dx. Taking him to local Tourette's Action events has been great. He feels "not alone" and is less anxious and depressed. Being very physically active, almost daily, really helps, although I've seen him Ticcing when playing football!! -if he doesn't have the ball. X country Running is amazing. Artistic endeavours are great.

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