chez

Hi Paul, I'd just like to say that your website really "spoke to me"! and I'd like to try a few things you mentioned with my almost 10yr old daughter (TS since 4.5yrs). We live in Australia, and although there are some resources here for TS, there are far fewer professionals who have dealt with TS, so I don't know where to go for help. However, your techniques make a lot of sense - especially coming from an adult with the actual disorder! I don't know how much a 10yr old will accomplish just yet, but will talk to her and see what she thinks too, as she's going crazy with tics at the moment. Thankyou for sharing your information and providing your much needed insight. (my daughter LOVES music too!)

Sorry I can't reply with any experience regarding CBIT, but I'm very interested in it, and would love to hear how you go with your daughter. My daughter is about to turn 10, so it may be a little early for her, but I think she would be capable soon. Good luck.

I can also confirm it's probably a tic, as it was one of the first complex motor tics my daughter did. Started doing this at 5, and went on for a couple of years, but on and off, and also sometimes subtle and sometimes quite strong, and she would almost fall over. She's now 9, and very rarely does it anymore.

My goodness, what a terrifying experience you have been through. I'm convinced that if we can resolve why tics wax and wane, not on a daily basis, but several weeks or months at a time, then we'll find an answer to TS. I'll be interested in following up on the diuretic issue.

Hi Ashley, I too am new here, although have been reading some of the various posts for a while, but particularly wanted to reply to yours because your story is soooooo much like mine! ie. .....daughter ...started tics at 4.5yrs, ...1st tic was head turning (came on so suddenly I took her to a medical centre after dinner one evening) ....have tried heaps of things with no improvement .... the car door thing happened with her too! ....etc. My daughter is now 8.5yrs. Things I've tried (through a lecturer/ex GP at a school of Natural medicine): eliminating sugar, wheat, dairy, adding various vitamin and mineral supplements (cant remember what they all were now). Also it was hard to monitor if anything was working as the tics wax and wane, sometimes waning for several weeks, and then slowly increase again. Then when they build to such a point that I "just have to do something for her", they subside again. Also, the waning would sometimes occur when I was doing NO diet control! I decided that diet restrictions and supplements were putting so much pressure on her (and me) so I've basically given up doing anything! which I feel very guilty about. She's now at an age that she's very aware of it all and can describe some of the feelings she's having when she tics, so I'm thinking of doing some sort of cognitive behavioural therapy, or habit reversal training, etc. I'll certainly be investigating it thoroughly first!! The reason I think there's a glimmer of hope that it may work is that when the car door thing started I decided to try to "nip it in the bud" by a mixture of forcing her to stop it, bribing her with something, and distracting her attention away etc. and it worked! She's never done it since except once, about 12months later, and I immediately put an end to it again. I know it's more of an OCD thing rather than a tic, but there's a lot of similarities between the two. I absolutely think that the key to finding a cure or treatment for TS will be when doctors work out why the waxing and waning occurs! I keep asking myself "what is happening when there are almost no tics for such a period of time?!". Chez.