tourettes

[meggiemoo]

HI i am a new member with a six year old daughter currently being checked for tourettes. She has several motor tics and one vocal, can anyone share with me tips on how to tell her to ignore stares and sniggers.

We recently suspected that DS has Tourettes but the Paediatrician decided it was more OCD. I'm afraid I can't help though as DS is severely autistic and non-verbal (Paed and I shocked some medical students by guffawing, "its just as well he can't talk isn't it"?!!). So my DS is unaware that his behaviour is strange and oblivious to anyone staring. I looked at the Tourettes Association (or something like that), should be easy to find on Google, they had a LOT of people on there themsleves of with children who didn't have any other dx. Medication seems to a very common treatment but maybe check out their website and join up if its confirmed to get better info. sorry not much more help.

Thank you for replying I will check out the tourettes site.

Hi meggiemoo, my nine year old son was diagnosed with tourettes a few months ago. We got an appointment with a psychiatrist last January when his vocal tic (a high pitched squeaking sort of noise - v.loud) was almost constant. He also had facial tics. He could manage to control most of his tics at school though.

After his initial dx his tics disappeared completely. He has been pretty much tic free for 9 months. However, his grandad died a couple of weeks ago and his motor tics have returned. For about a week now they have become gradually worse until now his head is moving with the tic aswell.

I too am worried about how he will cope with peoples comments. I find a lot of children don't even notice, and if they do they don't comment. My 4 year old ds hasnt batted an eyelid and I thought he might have said something.

When he had his last major tics (Sept'04 - Jan'05) I had the same problem, his best friend asked him why he was making a 'stupid noise' Ds1 ignored him, eventually his friend got quite annoyed with him and I tried to explain that he couldnt help it, I then tried to encourage ds1 to hold back on his vocal tic.

I would like to give him some sort of stock answer he could give anyone who comments, but havent thought of one yet.

We have chosen not to inform anyone else of the diagnosis, this includes his school and gp as we believe the stigma associated with this diagnosis will affect him more than his symptoms atm. We would reconsider this if we thought it would benefit him.

Haven't you been given any advice by the Psychiatrist etc? It must be a common situation for children with Tourettes you'd think. There must therefore be commonly used strategies. Maybe I'm being optimistic!

Message withdrawn

Davros, I must say that my ds1's psychiatrist was of very little help. In fact he very nearly blew it for him. I asked him not to disclose his diagnosis to the gp and school but he immediately rang the school and talked to his teacher. I hadnt even had a chance to tell dh.

Admittedly he did not say the word 'tourettes' but he made everything sound so serious that ds1's head held an immediate staff meeting and told everyone (including teaching assistants, dinner ladies, janitor - everyone)that ds1 had a terrible disorder that he was struggling to hide from the school. He had called it 'multiple motor and vocal tic disorder'.

The first I knew of this staff meeting was when I was called in and ds1's teacher told me they were thinking of how to tell ds1's classmates. I was pretty clear when I told her that under no circumstances were they to be told. I mean how humiliating would that have been for ds?! He had tried so hard to conceal it at school and he had succeeded. I don't think he needs to make school life any harder than it already is and I know he doesnt want his classmates to know.

As it is some parents already know because they're lunchtime assistants or class helpers and were told through this staff meeting.

Anyway, ramble over, I still havent thought of a suitable retort for him. He'll probably think of a better one than me anyway

ggglimpopo your dd's reply was ace!

I hate it when the professionals and school think they are the only people in the loop
Sorry if this is an unwelcome observation, but are you sure things wouldn't be easier for your DS if the staff know? Too late now anyway as they do. Have you also looked at the Tourettes Society (or whatever its called), they have an online chat area sort of like this so you could ask about strategies and whether people have found it better or worse if certain people know the dx.

Hi Davros, it wasn't so much that I didnt want the staff to know, it was more that I hadnt had the opportunity to control it for myself iyswim. The psych. had rang the school straight after our consult and everything happened without me. If it had been up to me I would have told ds1's class teacher and the head and maybe, if they'd advised, other teachers too. But definitely not all the add-on staff, parent helpers etc. I just felt it had been taken out of my hands and I lost trust in the psych. (It was our 1st consult btw)

I agree that its ridiculous and not the right thing to do at all. Why do all these people need to know? I'd be very, very cross.

I think the school really thought they were doing the right thing but I'm amazed they didnt speak to me first about it. Ds1's teacher looked a bit sheepish when I was asking exactly who'd been told. Especially when I returned the next day and said "I just want to be clear, you told x,x,x, and all the other x's!!" But yes I will look on the tourettes site, I did briefly around the time of his dx but he's been symptom free for most of the year so to tell you the truth I'd sort of forgotten about it. Actually today his tics have been much better - !