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Pretty sure my son has mild Tourettes...

(14 Posts)
twinkles1974 Sun 10-Aug-14 11:50:40

Hi, I'm a newbie here, my 1st ever post so please bear with me!
I've pretty sure my DS (7) has mild TS. His dad was recently diagnosed with paranoid schizophrenia so I was researching that on the internet. Links took me to neurological disorders websites & I ended up on a page about tics. Was in shock as I read about the symptoms of TS- it was describing my DS perfectly. It had never crossed my mind he had TS, had always just thought it was his 'funny ways/habits' etc & ashamed to say had told him off about some of his tics as they were annoying :-( feel so bad now.
Anyways, went to GP to discuss it all & have to take him for a "check up" next week (GP wants to observe him). Now I know he will just sit there, shy & quiet, the only tic she is likely to see is the blinking. He has a whole host of other simple motor tics & a couple of verbal ones (throat clearing & sniffing) but they all wax & wane.
My aim in getting a diagnosis is that it enable him to access extra support at school (especially extra time to complete tasks & tests etc)
I've come on here to possibly chat to someone who has been through the same thing. I just need to talk about it. I've tried talking to family members about it but the topic is quickly changed, I reckon they just think i'm neurotic lol as the tics themselves are quite small & only a few have been noticed by others.
Anyone want to share their experience? Did you get a diagnosis? How hard was that process?
Sorry for the long post, I could have gone on for much longer!

PS. Is it usual to be addicted to reading the threads in the AIBU section?! I lose hours of sleep lying in bed at night reading them all! The EKL was hilarious! :-)

FanjoForTheMammaries Sun 10-Aug-14 11:52:58

He might, but also benign tic phases are very common in children so don't worry too much about TS yet x

twinkles1974 Sun 10-Aug-14 12:27:43

What are benign tic phases? Not read about them?

FanjoForTheMammaries Sun 10-Aug-14 12:39:53

If you look up 'transient tic disorder' you will find lots of info smile

twinkles1974 Sun 10-Aug-14 12:43:48

It says child must have had tics for less than a year to be transient. My DS has had them for 3 years now...

FanjoForTheMammaries Sun 10-Aug-14 12:44:46

Ah, I see.

Well then I hope you get some answers soon

PolterGoose Sun 10-Aug-14 14:06:49

twinkles have you ever tried videoing ds 'secretly'? Then you could show the GP.

Good luck smile

twinkles1974 Sun 10-Aug-14 19:35:52

Yes did that & showed her, thanks :-)

ChampagneAndCrisps Wed 13-Aug-14 10:27:42

He sounds like he meets the criteria for Tourettes. But it is a spectrum of illness, so he may not need medication. The potential side effects of the drugs are such that they're only used where it's severe.

You should get a referral to Child Psych to get the diagnosis and also get him seen by an Educational Psychologist.

My DD had severe Tourettes and now does exams in a room by herself. Without the stress of the quiet exam room her performance is much better.

Bodley Thu 21-Aug-14 23:45:10

Hi twinkles, my youngest boy has just been diagnosed with Tourette's. He has 'mild' tics, he's had them for a year, it started with coughing and throat clearing and then squeaking and nodding/nose touching. They stopped for 6 months then returned, like your child, they wax and wane, most people don't notice too much, think we notice more. He is only 4. We had same experience, son was quiet in first assessment, so as above poster said, we videoed him secretly. Anyway, in recent assessment after a year, he had obvious squeaky vocal tics so got a diagnosis. I am however at a loss as to what it will mean for him. He has been referred to a Tourette's clinic which apparently has a huge waiting list. He is just about to start school so I've no idea what to tell them. Hope you get somewhere. I think Tourette's is quite difficult as it.'so fairly rare and doesn't seem to be treated so seriously.

Bodley Thu 21-Aug-14 23:46:38

I must just say that I contacted Tourette's action who were really good, provided lots of info and were very supportive.

mrsbaffled Tue 26-Aug-14 18:13:03

Hello,, both my DSs have 'mild' TS (and comorbid OCD traits). Dx was VERY easy and straightforward for us. I took DS2 (4 or 5 at the time) and showed the GP him ticcing - he demonstrated lots of nose twitches in the room, and showed him video I have taken. Also my father has TS, so it was in the genes. As the genetic link was there and the tics were clear (both in RL and on video) he referred to paeds in county, who referred him onto a neurologost out of county as they had no local knowledge.
The neuro appt lasted all of 15 minutes. He listened to the symptoms and took our history. As he has had motor tics and a vocal tic for over a year he fitted the dx criteria, so it was a straightforward dx. He is not medicated and we were discharged. Teachers at school know, but no accommodations are made.

My other son was dx the year after at 9. He didn't tic at all in the neuro consult, but I had video evidence and a strong family history. He is doing 11+ in a couple of weeks, but again the neuro said he wouldn't need any extra time etc even though he has some quite dramatic eye tics. He reckoned he had sufficient control over the tics that he would complete a question, tic, and resume. I am not convinced, but hey ho!

Have a look on the Tourette's Action website. There is lots of info on there - including leaflets to print out to give to school.

mrsbaffled Tue 26-Aug-14 18:19:03

(For us the process was quick-about 2 months from seeing the GP to dx because I waited until I knew they fitted the dx criteria. I knew there was no point going before a year. In the end I went 18 months or so after the tic started, at a 'bad' time).

ChampagneAndCrisps Tue 26-Aug-14 18:59:16

The help we've had with our children has been very variable.

The private Ed Psych opinion we got for my daughter has been very helpful with the school for getting her space to sit exams by herself. She's sensitive to the stress in a quiet exam room. The NHS psychologists we've experienced have not been so helpful - they seemed to blame the parents for the presentation of Tourettes.

Professionals can underestimate the effect of Tourettes on a child, and they are also inclined to blame parents for exacerbating tics. The reality is that Tourettes presents very differently in different sufferers. The effects can be difficult to pick up in an appointment because the child may not tic in front of the Dr/Psychologist/Nurse. If the child does tic then often the stress of the appointment gets blamed.

My DDs current Dr seems to have a good understanding. I'm not sure my DS's Doctor really cares. I have to be pretty vocal to get the help they need. Our GP has been good in backing me up with the hospital. The school have listened to me explain about the way Tourettes affects them- it's not just about the ticcing.

I think we need to educate ourselves, and speak up for our children. With medication my two are managing their severe Tourettes, and are achieving a near normal life.

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