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Here are some suggested organisations that offer expert advice on SN.


(11 Posts)
sasamaxx Mon 22-Apr-13 17:01:07

I think my son might have tourette's.
Took him to the GP on friday and showed her a couple of videos and she has referred him to paeds urgently to rule out seizures. I think this is because his current tic involves quite extreme head nodding and shaking.
He is almost 7 and has had various tics including lip-licking, grunting, throat clearing, leg thumping, crotch grabbing, eye twitching, blinking and eye rolling.
He is also very hyperactive and always has been - finds it very hard to stand still, stand in line, wait his turn etc and he will often shout and scream and race about causing chaos. He seems to find it very hard to control himself and can be a very stressful child to manage sometimes.

Does this sound like Tourette's?

I am now terrified that he is having seizures and feel very very guilty that I hadn't taken him to the doctor before but the tics always came and went, or switched to other ones.
I also feel guilty that I have caused this in some way by not being sensitive enough to his needs or not paying him enough attention or not having enough patience with his hyperactivity.

I'm really not sure what I should be doing right now and can't stop worrying about all of it sad

zzzzz Mon 22-Apr-13 17:19:41

Keep a diary. Record each incident.
Situation/precursor (eg sitting facing light)
What happened first (eg looked to left, stuttered or paused)
Any after effects (eg groggy, surly or unaware)

This kind of thing can really help if its epilepsy as it helps them make a more informed guess as to medication. How many in a day is important so mark ones you can't write up as well.

If it is seizures there can be great results with medication, and half of all children grow out of it completely.

mrsbaffled Mon 22-Apr-13 17:55:08

My 5 year old was dx with Tourette's over Easter. Look at the Tourette's Action website for reliable info.

To get a dx of TS there need to have been motor tics for at least a year with gaps of no more than 3 months, plus at least one vocal tic.

ADHD and OCD often come together with TS, so the active behaviour could be ADHD traits.

Please don't worry. It is good they are looking into seizures, so hopefully those will be ruled out. Lots and lots of kids have tics that are 'just' tics (google transient tic disorder). Even if it IS Tourette's, it isn't the end of the world. My dad has it and has achieved everything he has ever wanted to x

ToffeeWhirl Mon 22-Apr-13 20:04:19

Your son does sound quite like mine at that age (tics, hyper, extremely hard to manage) and my son (13) has Tourettes with OCD. However, that is not to say your son has Tourettes and only a psychiatrist or paediatrician will be able to diagnose it. As mrsb says, a lot of children have tics (often quite severe), but grow out of them. I don't know anything about seizures, I'm sorry, but it sounds as if you are getting the referral you need.

Tourettes sounds like the worst thing in the world to have because you always see the most extreme cases on television, but many people with Tourettes don't even realise they have it because they have it so mildly. Also, many of those who are diagnosed cope extremely well.

Whatever it is, there is no doubt that you have not caused it, so please do not torment yourself. This is a horrible time for you because you don't know what's wrong. Do you have a date for the appointment with the paediatrician yet?

sasamaxx Mon 22-Apr-13 23:58:46

thank you so much everyone smile
I'm using the phone so can't reply properly as I can't see the names and posts on the reply page angry but thanks for the advice and encouragement - and especially the support.
I don't yet have an appointment but the gp said I was to call the surgery if no appointment within 2 weeks so hopefully it won't be too long to wait. I just keep telling myself that whatever it is we will cope with it. I realise that although a diagnosis is quite terrifying, whatever it is, we need to know so that we can move forward.
I just hate the thought of people whispering about him and 'thats the boy with....' and all that.

sasamaxx Tue 23-Apr-13 00:02:44

also just to add - the tics have been ongoing for over 2 years now and seem to get worse in school term or if he is very tired or coming down with something.
also - he isn't 'almost' 7 - he is actually 7. I'm stressed today wink wink

zzzzz Tue 23-Apr-13 06:55:43

I should have added that our experience is epilepsy not Tourette's.

mrsbaffled Tue 23-Apr-13 08:27:21

It took 3 months for our appt to come through. We saw a neurologist who dx TS there and then.

ToffeeWhirl Tue 23-Apr-13 10:39:48

It took us eight years to get a diagnosis from our first visit to the GP about DS, in spite of us pointing out his tics regularly to all the professionals who were seeing my son. It would have been a lot easier for everyone if DS had had a diagnosis earlier <sigh>, so it's good that your son is being looked at so soon, op. At least you will know what you are dealing with and can find out how to help.

My son's tics also became worse during the school term and at times of stress.

It's natural for you to feel so worried, op. Try to keep busy and talk about it as much as you can with supportive friends. Post here for support too - we're happy to listen.

sasamaxx Sat 27-Apr-13 21:23:35

Thank you so much for all this advice ladies.
zzzzz it really helps to know what I should be recording when on the lookout for epilepsy - thank you!
mrsbaffled that is brilliant that you got answers so quickly - really hope the specialists we see are on the ball too smile
toffeewhirl I'm so sorry it took so long for you sad
That is really interesting that you also find term time makes the tics worse.
I was chatting to someone today and mentioned that I was suspecting Tourette's and they said 'why? Is he swearing?' lol - bizarre that people always associate it with this immediately

colettemum3 Sat 27-Apr-13 22:36:37

My 15 yr old daughter got her's confirmed yesterday by the gp. She hates going to the doctors and oh boy did her tics come out to play. They were still having a good time when we got back home and it freaked my hubby out as he's never seen it that bad.
We've suspected it for a couple of years but her tics have become more demanding so thought it was time that it was confirmed and that we have the paperwork to prove it.
But the little madam has been using them for her advantage for a while now (only a couple of times) and depends wherever or not others may see it as good or bad.
She does various martial arts and just before christmas her partner at karate called her freak and wimp. Freak she likes but she was absolutely fuming at being called wimp. It took a while but next time she was partnered up with him she kicked him in the balls and elbowed him harder then normal and then did her 'did i just tic expression?'

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