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Tourette's dx today

(20 Posts)
mrsbaffled Tue 02-Apr-13 14:45:32

DS2 (5) was dx with being "on the Tourette's Spectrum" today. Spent all this time worrying about his brother (being assessed for AS), that it hasn't thrown me at all.
I guess we don't know how it will go in the future, but at the moment it isn't a particular problem and he is not distressed by his tics.
We have been discharged until such a time he needs more help with either his tics or if the OCD gets worse.

So <hello>! We have a dx, but not for the son we were expecting first....

ToffeeWhirl Tue 02-Apr-13 15:02:28

Hello, mrsbaffled. My son (13) also has a diagnosis of Tourettes with OCD. At five, lots of children have tics, so it hopefully won't be too much of a problem for your son at the moment. My son's tics were bad at that age, but other children and even the teachers often didn't notice them. I think they assumed they were part of youthful exuberance (or just naughty behaviour <sigh>). The tics have improved over the years and now we hardly notice them. It's the OCD that's the problem.

I borrowed this book from the library when DS was first diagnosed. It's very helpful. Also joined Tourettes Action, although I spend more time on the OCD websites these days, to be honest.

I hope you get a diagnosis for your other son soon. I found it really helped us to have a diagnosis, even though we got the wrong one at first. At least it confirmed what we already knew, which is that our DS was different in some way.

mrsbaffled Tue 02-Apr-13 15:05:45

Thank you. I will look at those links x

ToffeeWhirl Tue 02-Apr-13 17:14:55

Have just realised I replied to your thread on the same subject the other day - I thought I recognised your name smile.

I watched 'Kids with Tourettes' on ITV the other day. Am not sure if it's a good thing to watch or not, especially if you are still getting used to diagnosis. Every case of Tourettes is unique, so it may have little relevance to your son's symptoms. I was particularly interested because one of the boys had TS plus OCD, however not a lot of attention was paid to the latter. On the whole, the children's tics were much more severe than my son's are at present, but it was interesting (though upsetting) to see how they were taught to delay the tics. My son has learnt to repress his tics on his own, but it's exhausting to do this and explains a lot of his difficult behaviour when he was at school.

Are you still feeling ok? I think it takes a while to sink in. I had to go for a long solitary walk just after DS1 was diagnosed. Even though we'd been battling for a diagnosis of something (we weren't sure if it was ASD, Tourettes or ADHD, but it ended up being TS with OCD, generalised anxiety and ASD traits), it was still something of a shock to have it made official.

There are some overlaps between AS and TS, incidentally, which the book I mentioned makes clear. For example, both syndromes bring a dislike of change and TS children often need help with understanding social rules, like children with AS. I had to teach my son to make eye contact and smile when he spoke to people and he still struggles socially. Also, both types of children can have problems with anger management, as they both experience so much frustration.

Feel free to PM me if you want to discuss anything off thread, now or in the future.

mrsbaffled Tue 02-Apr-13 18:39:27

Thanks for asking x
I still feel OK. I think the dx will raise a few eyebrows, though. I know school have been a bit blind to it, but I help in his class once a week and can see him twitching away all the time. I guess they just aren't looking.

I did see the programme the other night. The children were deliberately chosen to be severe. The boy with OCD was just gorgeous - I wanted to give him a big hug!

ToffeeWhirl Tue 02-Apr-13 19:26:01

People don't notice tics unless they are severe. It's very annoying when you can see your child ticcing and other people seem to suggest you are exaggerating. I arranged a meeting with my son's teacher about his tics when he was about six. She had only noticed the really obvious tics. Once you know what tics look like, you can spot them easily, but you need to know what to look for.

My DH has TS, although he was only diagnosed recently, following my son's diagnosis. He is much better than me at spotting my son's tics and OCD behaviour, because he is tuned into it.

You are right that the children chosen for that programme had severe symptoms. I know that people still doubt my son's diagnosis because he doesn't appear to have any tics these days. However, we know that he had a lot of tics for several years and that he still tics, but it's so subtle, only a trained eye would see it. He has learnt to suppress them, so he's fortunate in that way. However, the OCD that can accompany TS causes him no end of problems.

coff33pot Wed 03-Apr-13 12:54:56

That was a good programme a few tips that might help DS in there thanks for the link smile

Hope you are ok today MrsBaffled x

DS school are good with it all at present I just tell them if he is having an anxious day or not and they are prepared for it.

The TA bless her carries some soothers in her pocket and if DS is throat clearing badly and it is making him feel awkward she gives him one and has one herself loudly pronouncing she has an awful frog in her throat too smile

Its the bone cracking that makes me cringe as it hurts if he doesnt do it but hurts when he does and I am afraid he will damage his neck one day but what do you do when the tic will only be replaced by another and could be worse.

My main worry this week is that he has developed a phobia of going outside anywhere plainly saying its his holidays and he should be allowed to stay in if he wants. If forced out his tics go wild so its a new phase we are on at the moment.

ToffeeWhirl Wed 03-Apr-13 15:51:42

Also hoping you are ok today, MrsBaffled. Have you told your DS his diagnosis?

coff - sympathies with the tics. It's awful when they hurt to do or not to do. Also sympathies on your DS not being able to go out. DS1 has had periods when he can't go out because of his anxieties. It is very stressful for the whole family, particularly when the child is too young to be left alone. At least now he's 13, I can leave him for an hour or so. Maybe your son is just so exhausted from school that he needs time without any stress at all.

When I first took my DS out of school (he's home educated now), his tics mostly disappeared, so I'm sure they are exacerbated by stress.

mrsbaffled Wed 03-Apr-13 22:40:36

Bless you, ladies, for thinking of me x

I am mostly OK, but just had a bit of a teary wobbly in front of DH sad He is so stoical about the whole thing, it comes across as a bit uncaring.

I haven't specifically explained the dx to DS2. He was in the room, but he wasn't really listening.

I have told DH's family, but I am probably not going to tell my parents for the moment, anyway.

MareeyaDolores Thu 04-Apr-13 14:11:48

Leaflet for friends/ family to read

TheSitChewAceChien Thu 04-Apr-13 15:02:48

Hello mrsbaffled.
I came on here to look for info on tourettes, as DS (6) was diagnosed yesterday, and saw your very similar post.

DS has vocal tics (really really loud ones!) but it was somehow a real shock to hear 'Tourettes' in relation to him- if that makes sense?
He's also being assesed for ASD, but there is not enough info/evidence of that to be diagnosed or not yet.

Hope you're ok.

ToffeeWhirl Thu 04-Apr-13 15:54:55

I left a long message yesterday and it's not here confused. I included a link too - very odd. Anyway, here it is again - info from Tourettes Action, which also includes leaflets you can show to family (although I like your link, Mareeya - hadn't seen that before and it has some useful stuff on OCD on that site too).

Hope you are feeling ok today, mrsb. I'm sure your DH is not at all uncaring, but it just hasn't hit him yet, or he has his own way of coping.

TheSitChew - it is a shock to hear the news, isn't it? I felt really shocked to have it made official, even though I had suspected it for years. I hope you are feeling ok today and that you are getting enough support from friends/family.

mrsbaffled Thu 04-Apr-13 16:58:34

Thank you. I am OK today. Busy, which helps!

The neurologist directed me to Tourettes Action. The link you posted, Mareeya is super. I like how it emphasises how tics may not always be terribly noticeable. My parents are coming to visit tomorrow, and I may show them this. My mum worries for England and doesn't listen to science and reason, just to old wives tales. All so ironic as my dad also has TS, though it is hardly noticeable these days (although I was only told that he had the dx when she was ranting and raving about how horrible my dad is, so she sees it as something really bad sad ). I haven't told them about DS1's suspected AS. Again ironic as I think they both have it too, but just wouldn't understand and go into a panic!

How are you TheSitChew?

ToffeeWhirl Thu 04-Apr-13 17:59:46

Yes, it's good that the leaflet emphasises that tics may not be noticeable. More to the point, they are often missed by those who aren't looking for them. I think some people think we have made it up about DS1 having TS because his tics are so subtle or non-existent these days. It just shows how little is understood about Tourettes. His tics were very noticeable when he was younger, but now it's his OCD which is the problem.

I found it really helpful to give family a leaflet about DS1's diagnosis, mrsb. It gave the diagnosis an authority, whereas my own attempts to explain would not necessarily have received the same consideration.

We are still going through the "Shall we tell people?" situation. In fact, we have just been discussing whether to tell certain family members. Close family have known since the diagnosis, but we have kept it from the wider family. However, the issue has just arisen because there is a wedding we have to go to and we have had to explain the difficulties of DS1 attending such an event (because of his anxieties). And this part of the family have just found out he doesn't go to school, which has caused a lot of bafflement (and some judging, I expect).

Ironic that your dad has TS and you suspect both your parents have AS too. It will be very complicated for them to hear your son's diagnosis for that reason, although it may help them realise more about themselves over time.

Good luck with the visit. I hope it goes well, whatever you decide to do.

mrsbaffled Thu 04-Apr-13 18:08:02

Thanks. I haven't made a decision yet. I think I will print something off and have it there just in case. Actually, I think one of the boys will blab anyway LOL!

mrsbaffled Fri 05-Apr-13 16:39:41

I told my dad about both boys. We have agreed not to tell my mum until she notices. Actually he was brilliant and very understanding (as he would be, having TS himself). He started ticcing when we were taliking about it, and actually I now realise he does it a lot, but just hadn't really noticed properly before, which makes me feel a bit better. He has done really well for himself in life.
Apparently his nan had bad OCD too, so it's strong in our genes.

ToffeeWhirl Fri 05-Apr-13 17:09:34

That's good, mrsb. I'm glad your dad was so understanding about it. He must have overcome a lot in his life to cope with it without any support or recognition. Interesting that you are noticing his tics more now. We found the same thing happened when DS1 was diagnosed and we were able to trace it back in the family.

My younger son has a lot of vocal tics at the moment. We are keeping an eye on it to see if it progresses.

Have you thought about what you are going to say to your DS's teacher? It's good that you have a diagnosis so young so his tics are not misunderstood as fidgetiness or misbehaviour (hopefully).

Hope you are feeling ok today.

mrsbaffled Fri 05-Apr-13 17:18:36

Not really thought too much about telling school. I think I will make an appt with the SENCO as soon as they go back. Actually I am really good friends with one of the other teachers in his year, so I hope she might help me out a bit LOL!

Wondering how TheSitChew is too...

ToffeeWhirl Fri 05-Apr-13 17:26:29

Yes, good idea to see the SENCO. Great that you are friends with one of the teachers.

Hope TheSitChew is ok too.

MareeyaDolores Sat 06-Apr-13 19:39:31

Glad it went well with your dad. With MIL and ds's asd, we waited forever to tell her, then wound it into conversation as a brief mention of 'oh yes, it's official now'.

This was after an age of dropping hints and waiting for her to notice / mention the various traits

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