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positive stories about Tourettes Syndrome please

(19 Posts)
ArnoldLane Mon 28-Apr-08 22:13:06

Hi, I'm new to MN and am hoping for some 'you are not alone' type of help.

My 10yr old DS has TS (dx when he was 7yrs) & has a variety of noises & twitches which he pretty much does every waking hour. He has no other associated syndrome, sleeps well, above average at school (who are fantastic about it), plenty of friends who really don't give a stuff about the tics...but zero self-esteem because of the TS. On average once a week he'll be howling, saying he hates himself and he wish he were dead .

The local CAMHS have refused to see him as he 'doesn't meet their criteria' angry so we're paying for a counsellor for CBT which is helping a bit. The problem is after every lull the tics seem to come back worse. After a really quiet Easter he started shouting last week & yesterday we got, for the first time, some swearing (although he's been doing copropraxia for several months).

He's in year 5 now and we're really worried about how he'll cope with 2ndary school. All the info out there suggests that the majority of kids with TS will have outgrown it by their late teens & I know there's a few of you out there in MN land who have kids with TS. Any rays of light I can offer my sad little boy?

avenanap Mon 28-Apr-08 22:16:23

I've never known it to be outgrown (maybe others have) but I have known it to be managed. It's an energy burst, once the energy's used up elsewhere life can be a bit easier. I have known people use it to play an instrument. My brother has it, he's fine when he's on the pc and concentrating. I know that stress can make it worse. I hope this helps.

ArnoldLane Fri 02-May-08 20:20:35

Yes thanks. We've noticed he doesn't tic when he's charging around or engrossed in something. How old is your brother now?

hippipotami Fri 02-May-08 20:29:59

I am worried about this for my dd. But as she is only 5 I am still hoping she is suffering from normal childhood tics or transient tic syndrome.

She started ticcing age 3, and has NEVER had a break longer than a few days form ticcing.
She always has two or three tics running alongside oneanother over a period of months. Then one of the tics may stop, only to be replaced by something else.
She has recently started doing a breathing tic and now a 'snoring' type tic (not sure how to describe the sound)

Does this sound like the start of tourette's or am I letting my worries exasserbate things?

With regards to positive stories, I watched a documentary last year about people with TS. One lady said she knows when she has to tic and turns it into a 'recognisable' action, such as flicking her hair or crossing her legs.
And one guy was a teacher, who despite his TS was very good at his job and very liked by both other staff and pupils.

hippipotami Fri 02-May-08 20:31:21

Dd does not tic when swimming. It is the one activity she loves above anything else, and it completely engrosses her.

The rest of the time she is a bundle of shoulder shrugs, sniffs, headshakes, noserubs, sighs and snores. Especially when talking and reading out loud.

ArnoldLane Tue 06-May-08 08:59:17

From what I know of the criteria, it does sound like TS,although she's younger than average onset. www.tsa.org.uk is really useful.

Although my DS isn't badly enough effected to need medication we found having a diagnosis useful as peoples tolerances to the bizarre noises & rude hand gestures increase if they know what it is. Although tolerance will be tested now he's started shouting the most offensive swear word. We're trying to get him to convert it to 'knickers', but no luck so far....

I saw that program! There were a few last year about TS. We told DS about the teacher & theres a premiership goalkeeper with it aswell, but he can't relate to them as they're 'old'!

The exercise is a funny one. DS doesn't tic when swimming, running whatever, but the moment he stops (even just between lengths) he will tic. It's almost as if that XS energy that has to come out as a tic is used up when he's being physical. Eats like a horse but as thin as a whippet because of it though.

Blandmum Tue 06-May-08 09:07:01

I once taught a young touretter. With good treatment he was impossible to 'spot' and seemed to improve significantly with age. Got GCSEs etc. Nice lad

candyfluff Tue 06-May-08 12:03:06

ok so my friend has a daughter who is seven and has what i would call a tick-she flashes her hands like they are blinking and at the same time opens her mouth wide. do you think this is ts???
her mum has taken her to gp 1 year ago and she was referred to hospital for tests including a brain activity test to check for epilepsy but nothing was found.
she also has learning difficuties and is currently waiting to be assesed for dyspraxia.

mimsum Tue 06-May-08 14:52:46

Hi arnoldlane - all three of my kids tic although only ds1 has a dx of TS

tbh, we've got so used to the tics (they all started ticcing when they were 2 and they're 11, 8 and 5 now) that they're really not a problem - unlike the co-morbid stuff (anxiety, adhd, asperger-y traits) that ds1 has (but not the others)

ds1 is on clonidine, mainly for adhd type behaviours, but it's brought the tics right down so they're barely noticeable much of hte time

his psychiatrist says the next few years as he goes through puberty are the tough ones and as long as you can keep them in mainstream school they've usually come through the worst by the time they have to do any important exams

it's easier for me to be sanguine about the tics as my dad has had life-long tics - they were pretty bad between 9 and 16 and then calmed down to a pretty constant level - he's pretty eccentric but has had a great career and full life, so I know that tics by themselves really don't have to get in the way

ds is a swimmer and the tics stop as soon as he hits the water - it's as if the water washes them away - he's also managed to turn an arm moving tic into something that looks as if he's practising his strokes - in general, lots of physical activity is a GOOD THING for kids with TS - plus fidgeting has been shown to be a really effective form of exercise so ds will never be fat wink

I found this website really helpful when ds1 was first diagnosed and we were feeling fearful about the future - well worth a look for anyone worried about their child's tics

ArnoldLane Tue 06-May-08 21:08:13

Thanks Martianbishop & mimsum - really helpful. That website was reassuring too .

DS's main problem (from my perspective, not his) is the anxiety & general glass-half empty outlook. That's hopefully what the CBT will help with. But it's hard work sometimes convincing him he's not weird. The things they don't tell you about in ante-natal classes... wink

Candyfluff: the criteria for TS appear to be vocal & motor tics lasting for more than year, possibly with quiet (waning) periods of no more than 3 months. If you friends daughter isn't making noises then it might not be TS. Transient tics are fairly common, maybe your friend could video the tics to show her GP. If she's anything like DS she'll be really still & quite in the GP's surgery

hippipotami Wed 07-May-08 11:30:15

Hi Arnold, thanks for being honest, I agreee that dd's tics fit the criteria for TS.

It is heartening to hear that ticcing calms down after age 15.
At the moment dd seems to be getting more tics.
She is also a skin biter (has practically no nails and fingertips left) and went through a phase of compulsive hairpulling.

I hope the CBT will help your ds.

Please keep us posted with his progress smile

probablyaslytherin Wed 07-May-08 23:01:39

Have you read this www.amazon.co.uk/Anthropologist-Mars-Oliver-Sacks/dp/0330343475/ref=sr_1_4?ie=UTF8&s=books&qid=12101 96291&sr=1-4?

The person who has Tourettes is a surgeon. It might be reassuring to your ds to know of a successful professional person with Tourettes.

Robyn25 Fri 09-May-08 16:55:06

Hi

I've not posted here before (more of a lurker ) but I just wanted to add to this conversation. My brother has Tourettes and he's now 20 years old and although he still has it, it is so much better than it was when he was younger. He also suffers from OCD and elements of Aspergers and was diagnosed as dyspraxic when he was younger (although that may have been a misdiagnosis).

He has gone through just about every type of medication in his life and whilst some worked, others exacerbated the condition . . . sometimes he needed to take two lots of medication, one to counteract the effects of the other. Sometimes he forgot to take a dose, and it was unbelievably noticeable.

Speaking as an older sibling, somebody who had to grow up with this, I must be completely honest and say that it was not easy. I hope so much that your son doesn't have it to the same extent as my brother, and the fact that he doesn't have the other associated conditions does seem like a good thing. There were times when I wanted to kill him, because he drove (well, drives) me absolutely insane; he is impossible to have a rational argument with, having passionately unreasonable views and a tendency to scream and shout when things don't go his way. He would often pick the most hurtful things about us and shout them violently, even though he is, at heart, one of the sweetest and most generous people I have ever met in my life. He was never physically violent, not once. The only way to get through these outbursts was to repeat in my head, over and over again, that it wasn't him saying these things, but his condition. At other times I wanted to protect him against all of the hurt in the world; the looks that other people would give him when he ticced in a restaurant . . . the snide comments and bullying remarks of kids on holiday who didn't know him or understand.

All of this sounds so depressing, I know, and I'm sorry; I'm just being honest about my experiences, and apart from anything, Tourettes is such an individual thing for every patient that his (or my) experience of it won’t necessarily be anything like yours. Having said that, there actually are a lot of positives which can come out of this situation. For one, kids with Tourettes (like many other conditions on the autism spectrum) often tend to be incredibly artistic or musical . . . My brother had a fantastic natural ability on the saxophone (although he got bored after a few years and just stopped). He has also always been, rather paradoxically, and only at times, very mature for his age. Despite torturous outbursts, irrational spats, and bizarre tics, he has a well-balanced view of the world and will often come out with intelligent, insightful comments which none of the rest of us considered. It’s somewhat at odds with the rest of his behaviour, and I don’t know if it’s his personality or his condition, but it’s there nonetheless.

Despite his obvious intelligence, he was less academic than both my sister (now 15) and me (23), and left school at 17 after poor AS-levels (although that was in part down to his school). Incidentally, he went to mainstream school but had a special supervisor the whole way through, and a consultant he went to regularly, who was as much a therapist as a medical professional. He spent a year studying computer animated design because, again, he had a natural talent at it, and is now working full time in this field. Since then he has come off his medication to the extent that he only takes it when he really needs it; for specific concentration, when he is having a really bad day, or just because. He did have trouble with bullying when he was at school but he has come out the other side with wonderful friends, who are all the more wonderful for seeing him as he truly is, and past the tics (which have also lessened in recent years).

I will always see him as a little boy with the foot-shuffling tic who moved so slowly through the local shopping mall and was stared at by passers-by. I will always remember calmly telling the bullying boys on holiday, after he had left to change for supper, that I would smash their heads against the side of the swimming pool if they made one more comment about a boy they could never hope to live up to in generosity of spirit. He has been impossible to live with at times, and he will remain so forever – it will never go away, or be cured, only managed, and accepted – but he has also provided me with a view of the world that I could never hope to have had on my own.

He is now 6’3” and 20 years old, independent, driving (yes, he was allowed to drive) and the only long-lasting effects that my parents are particularly worried about is his inability to quite get the grasp of money and credit. It burns a hole in his pocket like nobody’s business, and they have to keep an eye on what he buys, especially now that he has an income. He still lives at home but he’ll move out eventually. He goes out on his own, he has a life, he has a career. He will always have this as a part of his life but it won’t stop him from living it. I admire him hugely and I love him dearly. The next few years of your son’s life won’t be easy, but it will be all right in the end. And the more he knows that you love him and are there for him, the easier and more enjoyable his life will be.

Good luck, and don’t worry. I wish you all the best and I’m sorry for the length of this mammoth post . . . I only hope it helps, a little.

And now back to my corner . . .

cba Fri 09-May-08 21:02:41

robyn, that was a lovely post brought a tear to my eye. What a lovely sister you are!

hippipotami Fri 09-May-08 23:22:37

That was a beautiful post Robyn, please do not stay in your corner too long smile
You are a truly fabulous sister.

ArnoldLane Sun 11-May-08 21:42:55

Thanks Robyn, as a bit of a lurker myself I appreciate the contribution.

From all the stuff on the internet it does seem that for people with TS plus something else its the something else that gives them most difficulty and as DS only has Tourettes we're still hopeful that so long as he can learn to view life more positively he'll be OK. I know what you mean about it sometimes driving you mad. I can blank out all the tics (although they can take a couple of days to get used to when a new one appears), but he is impossible to watch TV with. Every thought that goes through his head comes straight out of his mouth, and if he hears a phrase that tickles him he'll repeat it and repeat it and repea.. well, you get the picture. smile But IKWYM, it is hard sometimes to know whats Tourettes, whats his personality and whats just a perfectly normal boy thing. But he is bright, loving, funny & sensitive, a bit too sensitive perhaps, but I wouldn't change him.

DS is our first so unfortunately he doesn't have a caring & protective older sib. That said, DD (7yrs) has been known to give a bollocking to anyone who draws attention to his tics!

So, a big day for him tomorrow. His class are off on a residential trip for the week. The sensible part of me knows he'll be better than fine, he'll love it. That stupid, knee-jerk, worst-case scenario part of me that seems to have developed since childbirth is being ignored. I shall go to the library and request that book that probablyaslytherin recommended instead.

Final thought for tonight. Watched Derren Brown on friday and he got a girl to electrocute a kitten (not really, but she thought she had) by using negative reinforcment. He described it as by telling someone not to do something the idea burns in their head until they have to do the banned thing. The way he described it sounded just like how DS describes the tics - like an itch in his brain that gets worse until he does the tic. Obviously we can't do much about the tics, but it did make me realise that we'd been going about the positive thinking the wrong way. We've been telling DS 'don't get so worried about what other people think' & 'you shouldn't think that everyone who looks at you is thinking bad things about you'. But it's all been with a negative emphasis - don't, shouldn't, mustn't. So that's my homework whilst he's away, its harder than you think smile

hippipotami Sun 11-May-08 21:48:39

I like your attitude Arnold, and I think your wonderful boy is going to be just fine smile

ArnoldLane Sun 11-May-08 21:49:38

Flip, i knew I forgot something. Your message did help thanks Robyn. Your brother is a lot better than he was and thats something I can tell DS along with the other bits people have kindly posted, when he's in one of his black moods. Thanks

TeamEdward Tue 25-Mar-14 09:39:41

Message withdrawn at poster's request.

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