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Tourettes Syndrome

(10 Posts)
Toffeefudgecake Sat 25-Jun-11 19:26:48

My son has recently been diagnosed with Tourettes, plus OCD, dyslexia, social anxiety and ASD traits. Does anyone else have a child with Tourettes or any of these other issues? It would be so helpful to hear other people's stories. I know one mum in RL who has a son with Tourettes, but nobody else. I would love to hear from anyone in a similar situation.

magicstick Sat 25-Jun-11 22:07:25

My son has dx autism, adhd and social anxiety. He has had tics he had head nodding, shoulder shrugging, sniffing, burping, whistling, howling and swearing but he has never been given dx of tourrettes. He becomes very distreessed with social contact especially with people he doesnt know. He can start swearing or being rude to people just because he doesn't want them to talk to him. How old is you son ? Is he in mainstream school ?

Toffeefudgecake Sun 26-Jun-11 00:07:08

Hi Magic. Thanks for your reply. My son is 11 and is off school (mainstream primary) because of his anxiety issues. He doesn't have any noticeable tics at present (probably because he is more relaxed at home), but has had multiple vocal and motor tics in the past (grimacing, blinking, calling out, arm stretching and suchlike). He finds being with groups of people extremely stressful, but enjoys the occasional company of the two friends he has from school, so long as it is not for too long. He is generally fairly well behaved these days, although he can be extremely rude to us.

Why do you think your son hasn't been given a diagnosis of Tourettes if he has been having these tics for over one year? I notice your son has a diagnosis of ADHD: the psychiatrist who diagnosed my son said there was a link between Tourettes and ADHD and that they were on the same spectrum.

It sounds as if your son has quite severe tics, which must make life very difficult for him. Does he go through phases when the tics are not so bad? The doctor told us that it is possible to take medication for tics, but that it has so many side effects that people prefer to put up with the tics. Fortunately, my son does not need help for his tics at present. He has been prescribed Prozac for his anxiety and OCD.

I am just about to start the process of applying for a statement, which everyone who's been through it warns me is a long and tortuous process. Did you find it so?

My son is due to start at a large mainstream secondary school in September, but this is going to have to be very carefully managed. I think he will probably be put in a small class of children with special needs, rather than in one of the larger classes, but I have yet to discuss that with the school. Does your son go to a mainstream school?

magicstick Sun 26-Jun-11 15:32:45

My son is 13 his tics come and go and he normaly manages then quite well it is just if he is very anxious that We find they get worse. They were looking at it being tourrettes when he was younger but I think because of the overlap with autism and adhd they couldnt really decide. We didn't push for dx of tourettes because we could with a fight get the help he needed in school.My son takes clonidine for his ADHD. He has had a statement since he was five but only because we fought to get him one. He attened mainstream primary school. When he went to mainstream secondary school he didnt manage and the teachers didnt know what to do with him. They began excluding him until he was permantely excluded. Eventually we got him a place in an independent special school. He has come on so much since he went there and is not so anxious now.

unpa1dcar3r Sun 26-Jun-11 18:58:52

Both my boys have 'complex tourettes' like behaviours. Both do all the usual facial stuff and all that, but elder boy shouts out words and then quacks like a duck sort of, and twists his hand up in the air going 'sorreeeee, bad word'. Quite often they are bad words too! But we've changed certain ones like B*llocks is now bullitts!
Younger son swears all the time, especially when challenged or anxious, espcially round us! Not so bad with teachers etc at their special school.
Older boy burps atrociously! And now he's got this new thing where he pretends to sneeze really loudly whenever hes' anxious.
They have Fragile X syndrome and it's just one of the many things that come with that! We laugh mostly, you have to really, and to be fair they're pretty funny at times!

unpa1dcar3r Sun 26-Jun-11 18:59:10

Oh and then there's the spitting....

wendihouse22 Mon 27-Jun-11 09:54:10

My ds is now ten. Diagnosed with autism aged 4. A year ago is anxiety levels started to get really distressing until he was diagnosed with OCD in October 2010. He then started to say rote like phrases, like a mantra. No swearing but, he couldn't control it and would just call out these few phrases, irrelevant to whatever was going on. The more anxious he got, the more he did it until now, when we've just started him on a weeny dose of Risperidone for the verbal tics and anxiety. He's in mainstream primary. He's bright but, his learning ground to a halt when all this kicked in!

His psychiatrist has said that ASD sits nicely with OCD/Tourettes.

I wish it was just the ASD again, which souds ridiculous really but the OCD/Tourettes has impacted massively o. His/our lives. Tentative school friendships have died away. We were new to this area and I can honestly say, after 18 months, we do not have any acquaintances.....never mind friends. We used to have 2 boys over after school but my ds was never invited to theirs in return. Now, no one comes. I'm not seeking sympathy.....a great many people are in that boost, I know.

He's due to go into secondary in Sept 2012 . We're hoping he gets a place at a mainstream secondary with ASD provision. He IS Statemented, but places are tight. OP, the who,e statementing process is tough.....we got one on second application but, it has been absolutely vital. I would say, grit your teeth and go for it.

wendihouse22 Mon 27-Jun-11 09:56:05

God, blood iPad is crap for typing.

A lot of us are in the same BOAT.

Toffeefudgecake Mon 27-Jun-11 12:26:49

I met with the primary-school SENCO this morning. She said it is too late to apply for a statement with her, as there are only four weeks until the end of term, but that she will work with the secondary school to apply next term. I realise this will probably be a long battle.

I have asked her to convey the importance of my son having a quiet place to go to when he is feeling stressed. He may be in a small class of special needs' pupils, but the SENCO wasn't sure if he would be eligible. How many special needs labels do they need to be eligible, FFS?!

magic - it's good to hear that your son is now settled at school and doing well, although I'm sorry that it was such a battle for you to get him there. I can see why you didn't pursue the TS diagnosis, when you clearly had enough to get him a statement already (with the usual fight required, of course).

unpa1d - you are right about having a sense of humour. We try to ignore the tics mostly, but some of them are so funny that it actually helps DS if we all laugh about them. He had one where he used to whoop like a cowboy. He found it really embarrassing and would try to hold it in until there was an appropriate moment to whoop. There was another that was just like a Hitler salute - most unfortunate. Luckily, it didn't last long. No spitting, thank god - that's a tough one to deal with. And no swearing either - well, there is, but it's deliberate! Am hoping we don't have spitting/swearing tics to come...

wendi - I'm not surprised your son's learning ground to a halt when he was suffering anxiety and tics. I took my son out of school because he was utterly exhausted and miserable, thanks to his various issues, and he clearly couldn't learn in that state of mind. Since being educated at home, his tics have vanished, but his OCD is still very bad. From what I've read, the OCD can be harder to deal with than the Tourettes. Certainly, in my son's case, the OCD wears him out and makes doing anything out of the ordinary especially difficult. I hope that the Prozac and CBT (he's on a waiting list for the latter) will help with that. I'm really sorry to hear that you are so isolated and that your son's friends fell by the wayside. Does he mind? My son is actually very happy to be on his own or just with us for most of the time. He finds being with other children very stressful, but the psychiatrist said he needs to practise in social situations, which is one reason I feel he needs to go back to school.

wendi - are there any other mums in the same boat as you in your area? There may be a local NAS group or other support group. Even if your son doesn't miss company, it sounds terribly hard on you. I know how hard it is to settle into a new area and it must be even harder if you don't make any new acquaintances.

It's really good to hear from other people in similar situations.

unpa1dcar3r Mon 27-Jun-11 17:32:15

"I have asked her to convey the importance of my son having a quiet place to go to when he is feeling stressed. He may be in a small class of special needs' pupils, but the SENCO wasn't sure if he would be eligible. How many special needs labels do they need to be eligible, FFS?!"

Toffee, what relevence is it about whether he qualifies or not? I don't understand why the school cannot have a quiet corner, surrounded by a little wall with cushions in etc where he can chill, even this would help. Esp if they provided say ear phones and played some really soothing music while he's there. Or let him look at some books or something. Its easy done FFS, no biggie. Why they making a drama out of it?
My boys go SEN school but they still have quiet corners (as well as multi sensory room etc)

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