Monday 26 September 2011

Mouthsplint - looking promising

Following a couple of attempts at the mouthsplint we made another visit to Dr Varga in Torquay for new diagnostics and a new lower splint.  Once the splint was fitted yesterday the boys were anxious to leave. Pete and I were chatting to Dr Varga and the hanging around would normally have triggered tics, or they would start to irritate each other which would in turn set off the tics. This didnt happen they were very calm, in fact the whole room felt calm, something we dont experience very often.
Joe had been experiencing really nasty ankle twisting tics and leg tics for a good couple of weeks. yesterday morning he had to come back early from a walk with a friend and their dog due to the tics being so bad. Walking back to the car with his mouthsplint in he did not show any signs of tics. 
In the car on the way to Torquay he experienced leg tics due to being cramped up in the car. This resulted in him punching his calf muscle very hard on numerous occasions.  Apart from doing this 3 times when he first got in the car to come home- it did not occur again during the 3.5 hour journey. 
Ben has not been able to touch a rucksack for months due to the sound of the material. He picked up his dads rucksack without thinking and was astonished when we pointed it out to him. He scratched at the material and it didnt trigger the tics. On the way back in the car despite being exhausted, Ben showed only minor head nodding tics and small arm tics.
At school today both boys were very tired following the late nights of the weekend. Last week we all noticed their tics increasing, so much so that on a couple of days the boys didnt get into their main classes at all.  Ben actually had Wednesday off school due to having physical and vocal tics non stop for 8 hours. Normally being so tired, with tics appearing to increase (and it being a Monday !) we would have expected a very ticcy day at school. This was not the case. Ben had a few minor tics and was very tired but no major shouty thrashing tics at all. His LSA said compared to last week it was not bad at all.
Joe had one or two leg tics throughout the whole day - last week he couldnt walk two steps without the leg tic. His arm flicking tic was hardly noticeable. When he took the splint out to go to bed the tics began to increase. His leg kicking tic came on, his arm flicking and his whole body was jerking.
I know this is just two days and i will record our observations over the next two weeks as the research shows that the tics can reduce over time. I will keep you updated.
Take a look at the videos of Joe and Ben on their very first visit to DrVarga.
His new website is tourette-syndrome.co.uk.
Trust me it is real, they are my kids and we witnessed the difference.

1 comment:

  1. Update on mouthsplint.
    We discontinued the treatment because we found the splint was only fitting for a few days due to the boys losing teeth and as a consequence existing teeth moving around. We will revisit this treatment in the future when their teeth have settled down if tics do not improve for them.

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