Trying to understand- urges or tics?

[Skins]

Hi,

I'm pretty new to this as my 7yr old son has only just begun to show symptoms, which have escalated quite dramatically over the 2 months that they have been present. He says he has the urge (habit, his word) to be 'naughty' which normally results in one of 3 things, him trying to punch/kick/ scratch me, a hyper attack where he seems to lose motor control and has be helped to walk down the stairs after doing forward rolls jumping in the air and landing on his knees and a great deal of facial tics/grimaces or he has a couple of time started spitting on the floor.

What I don't understand is whether these are also tics or a different part of the illness, can anyone shed some light on this as it may help me to deal with these situations differently, thanks

[EsJaySea]

Hi - what you're describing are all tics, even the urge/habit/thoughts of doing something naughty can be thought of as a symptom if it's out of the blue & random. People with TS can get pre-something (preomitary?) urges before tics; my son describes it as an itch inside his brain. It's this itch that the tic scratches.

Your son clearly has a lot of complex tics (complicated movements or sounds, using more than one muscle group, as opposed to simple tics which would be a twitch, blink or grunt etc).

My son has had 2 major escalations since starting with tics when he was 6 1/2 (he's now 14) - the first was when he was 9. I remember how scary we all found that & we'd already had 2 years to get used to the diagnosis & whole idea of Tourettes - I can only imagine how frightened you and your 7 year old must be. Both my son's escalations settled down (after a few months), but after the first time when he was 9 his baseline TS was re-set at a higher level. (before he only used to tic 3-4 days a week; he has ticced every day ever since).

The last big escalation was last year & that turned out to be because he'd developed OCD as well and the anxiety associated with this new thing he didn't understand just set everything off. The OCD has responded extremely well to CBT, he is also now on 5mg Aripiprazole per day (but I'm not sure how much effect thats having, other than his belief that it's helping!) and he's doing fine. Still ticcing daily, but at a level that (mostly) doesn't bother him.

So, to answer your question - try to think of the urge as the tickle up your nose and the tic as the sneeze - they're part of the same cycle. Sometimes the tickle goes away, sometimes you sneeze.

Ideally you need him to be properly assessed, but I know how hard that can be. Tourettes Action Website I think has a list of clinicians (along with lots of other really helpful information - make sure his teacher sees the schools resources).

Best wishes

[Skins in reply to EsJaySea]

Thank you for your help. we have an appointment with paediatrician today so hopefully we can move forward a little more. thanks again Kate

[KarinaPoulton in reply to EsJaySea]

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[Pierce]

Hello, first I'm sending you huge ((((hug)))). I know what your going through and its hard work. I'm mum to an 11 year old son with TS and nothing that you have written surprises me. I have been bitten, kicked punched and insulted more times than I care to remember. I'm moving in to a bungalow as he's no longer safe to use stairs. Car journies were eventful when he developed a tic where he would open the door when I was driving. He now sits in the back with child locks on. It souns like you need some support. Have you called the Tourettes Action helpline? They are lovely and can provide a listening ear to a list of consultants. The forums are also really helpful for advice. The best thing for me was joining a support group. All of a sudden we were no longer alone and part of one huge family. We didn't have to worry about explaining things and I got so much advice and support. Tourettes Action can give u details of groups near you and possibly a befriender.

I would advice you to get some rescue remedy take some yourself and give some to your child. It won't cure anything but it just takes the edge off and can help you to cope a bit better. If its possible to ignore tics then do, I find making a fuss can make them worse. Chewy Tubes are great for biting tics you can get them on ebay or amazon. If he is hurting his knees when dropping to the floor knee pads are handy. You can get them all over the place. Try to remember to laugh, sometimes Tourettes is funny we are only human and laughing with someone is ok laughing at someone is not. Talk to your child about it they might surprise you. Most importantly get some me time for yourself. Its exausting being mum. I hope this has helped x

[Skins in reply to Pierce]

Thanks for advice and support! Saw west mids support group on Facebook,then saw an ex pupil as a member(I'm a teacher for my sins!) but really don't like the idea of work/ private life mixing, I'm sure other teachers will understand, so still feeling a little isolated. one step at a time! Thanks again K

[alexfrombath]

I don't think I can really add anything as the last two replies were really concise! But in my opinion...I think these are tics and the urge might be the premonitory urge, if that makes sense?

[Skins]

Thanks Alex. still trying to get my head around it really. I must admit as a teacher my previous knowledge about the condition was sadly lacking. personal mission i feel! I now know that school training is a joke. When i think i understand a little better i will try to educate others. thanks again K

[EsJaySea in reply to Skins]

I think they only do 1/2 a day on it in medical school as well! Premonitory - that was the word, thanks Alex.

We didn't even have your reasons, but didn't feel that support groups were for us (a bit introverted & socially inept!!). That said my son did end up, via a very long & strange route, being referred to a TS group run by a clinical psychologist (Dr Tara Murphy) at Great Ormond Street. It consisted of 6 structured sessions spread over 3 months last winter & covered subjects such as 'what is tourette syndrome', 'building self-esteem' and 'school and teasing'. There were 6-8 children in the group ranging from 8 to 14. A couple of older kids came once, but didn't come back. Parents weren't included in the group, but Tara did do a couple of Q&A sessions with us which was very helpful.

My son got a LOT out of this group and is now Facebook friends with the 2 other boys his age. I know Tara was hoping to expand the group in order to split the ages more appropriately. We are in East Herts where the local provision for TS is zero. Hopefully West Midlands has a big enough population to support a TS expert and I hope your appointment today went well.

You need never feel alone with the internet!! (didn't mean that to sound quite so creepy!)

[catherinem]

There is a consultant at the Birmingham Children's Hospital that treats kids. I run the West Mids support group.

The tics is the actual movement or sound, the preominatory urge is the uncomfortable, pre-sneeze like itch sensation us ticcers get before we need to perform that particular tic, sometimes it lasts for a few seconds, sometimes it's less than a split second. Does that make sence.

I used to teach, music at secondary level, but due to tics getting worse I'm now as one might say - "on the rock'n'roll". From my experience in mainstream training on TS has been nil, not I, personally needed it, I did however have a lovely afternoon with my collegues at a PRU having trainning with some ladies from the local LEA, frankly the training was laughable.

[Skins in reply to catherinem]

Hi.

Thanks for the reply. Could you give me the name of the consultant at Birmingham children's please. just watched your Nhs reforms link, this perfectly explains why we're having the problems with referral to a consultant. Still waiting for Camhs, not even a letter after being referred almost 6 weeks ago. we did go private to priory as I couldn't accept the wait, my son needed, and still does, need help.

K

[catherinem]

I'm afraid I don't know the name of the consultant as I'm an adult ticcer and I don't have my own kids, but I can get back to you to that one.