Tourettes

[shithappensx1000]

Hi guys
does anyone have any experience of Tourettes? It is the school's latest theory! They also want me to take him back to the GP for a referral to rule out ASD/Aspergers. They have also questioned dyspraxia, dyslexia, ADHD, ODD at some point in his short life. He's 9.
I still think it's some form of sensory processing.
Anyway, please any info/experiences would be much appreciated.
Thanks. xx

Hi, ds age 11 has recently been dx with tourettes (also has severe autism, GDD, low muscle tone & pica). He is non verbal but has recently started having shouting outbursts (always same noise) when he does this he often puts his hand to mouth as though trying to stop himself, constant blinks and scrunches his face, hits his chest and feet keep turning inwards which is movement tic. HTH x

To get an official DX of tourettes you need to have motor and vocal TICS present for one year, we are going through the DX route now. Our son who is 11 started July 2011 with motor TICs facial grimacing, blinking, throat clearing, these progressed to vocal TICS by november shouting out words, currently they are non existent and heighten when he is excited or anxious. We approached our local paediatrician who has referred us to CAHMS for diagnoses. Other than Mumsnet which is a great forum for help and advice, we are also on Tourettes Action UK, very helpful if you need more information.

Have you hear about the GAPS diet as a treatment for all these conditions?
This is a good lecture explaining the principles.
vimeo.com/10507542

Also have you heard about the possible link between Tourettes and strep infection? THere was a case in america where a cluster of girls in the high school all got tourettes at the same time, with a possible explaination that they shared an infection.
www.scientificamerican.com/article.cfm?id=could-infection-cause-tourettes-like-symptoms-teenage-girls

Hi thanks for all your responses.
My DS is 9, he has had 'tics' for the last 2 years. It started with clearing his throat. Over the last 12 months or so he has started to call out random words (often linked to a film he has watched or something he has heard). Recently, he has started to have tics connected to his tongue - clicking it or blow with it. There are occasions where he spins on his knees with his head on the floor - often when he's excited or in trouble with us. All tics seem to increase when he is excited or under stress. He also does a high pitched squeal when over excited.
He is a very stubborn child and highly opinionated. There is no grey area with him, it's either right or wrong and he has a strong sense or justice/injustice - this might just be a character trait being our child.
The community pead. saw him yesterday and said he's physically fine, blood tests are all normal etc. She did say many children have tics that they grow out of and we many be looking for them more than other parents might. I am just confused! So I think it's time to go back to the GP and ask for a referral for CAHMS.

I wonder sometimes if ds (8 yrs) has TS, he has private dx of High Functioning Autism (waiting for ADOS) so I am assuming his tics are part of that rather than TS.

He grimaces, nose scrunches, sniffs, stretches his mouth, chin to chest throat clears etc, at the moment they don't seem to cause any discomfort.

His tics are a lot stronger and more frequent at times of stress, even if it is good stress i.e Alton Towers....He loves fair rides, We went last week and he plucked up the courage to go on the spinning roller coaster. He shouted "this is amazing, I don't even care if I die" lol

Hi my ds has recently been dx with AS/ADHD also Tourettes and sensory processing disorder.

Sensory issues do heighten his tics due to overload or stress and can also be triggered by over concentrating on something ie. computer game or learning or if he is very tired.

His are both vocal and upper body at present.

I would video any episodes you see for the professionals to view as its harder to explain if your child isnt presenting with anything at the time and so can observe

Got to pop out now be back later

Hi Coff33pot how did you get a dx and how long did it take? And now that he is dx, what support does he get at school and from the medical profession?

Hi crappypatty - sorry to be ignorant but what is high functioning autism. Is your DS in main stream education?

This is a whole new (scary) world for me and my family. x

If you have heard of Asperger Syndromen (AS) then HFA is just the same imo, delayed language is the main reason that children got a dx of HFA rather then AS. The term AS is being phased out so current dx is HFA.

Yes ds is in mainstream school. He copes academically but socially and emotionally he doesn't.

If you don't have any knowledge of AS or HFA here are some links.

www.webmd.boots.com/children/asperger-syndrome

en.wikipedia.org/wiki/Asperger_syndrome

en.wikipedia.org/wiki/High-functioning_autism

www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/high-functioning-autism-and-asperger-syndrome-whats-the-difference.aspx

Hi shithappens sorry I didnt come back to you been working stupid hours and nowhere near a computer lol

Overall dx took 16 months all told. Its a bit too long to post here but suffice to say he was very complex and lack of experience down here let to a second opinion referral to Maudsley.

It is correct what another poster said that the tics need to be present for 12months or more. I would repeat the videoing of your ds is important as when I showed the proffessionals there were tics shown to me that I hadnt even spotted as a tic. I videoed via my mobile so ds was unaware I was doing it ie when watching tv, on laptop with his sister, out in the garden through the window.

Showing your concerns is a lot easier than explaining them if you see what I mean :)