Firstly, as a new member I just wanted to say 'hi' and to express how comforting it is to:
a) have an avenue of treatment that I can explore and act upon rather than listening to Dr's suggest that there is no known reason for tics and to just ignore them
b) know that I'm not the only parent out there dealing with this.
I'm a mum to a nearly 9 year old daughter who has displayed basic tics for the past 5 years. Like everyone else they have waxed and waned but are pretty much always there in some form (both vocal and motor). When I started researching possible treatments, Sheila Rogers 'natural treatments for tics and tourette's' book popped up on my screen and there were just too many factors that rang true for my daughter.
Motor tics that she has had over the last few years have included tapping her face, opening her mouth whilst simultaneously widening her eyes and looking to the left, closing her eyes almost as though she is falling asleep then opening, looking into the corner of the room, blinking repeatedly, tensing her stomach, scrunching up her toes, a head jerk (this has been the most painful one to date) and leaning her head to the side.
The most aggressive one she has had was a full, quick body jerk when she was 5. This was the one that had us first go to our GP to get her checked out as up until then they had been very minor.
Her vocal tics are less varied so its been either a clearing of the throat, a type of grunt or a quick 'hmmm'. The most recent one is the one I mentioned in my original post where it's like she's quickly holding her breath with every new sentence she speaks.
She does have a known allergy to peanut and dust mites and as a young baby was intolerant to dairy, soya and egg so the idea that her tics may be connected to what she was eating seemed logical to me.
Then when I had a good think about the times her tics have worsened I could almost always directly link it to chemical exposure e.g. the day after I treated her hair for head lice was when she first really exhibited a jerk like movement of her whole body, the evening after a friend had sprayed coloured hair spray on her for a disco her tics ramped up etc.
Unfortunately, the links aren't always that apparent and so I find myself searching for the best way to get her screened for possible further intolerances and sensitivities . Two months ago I cut out gluten and refined sugar (as much as possible) which led us to our first break through where we had a number of weeks without any real noticeable tics.
However just this last week a vocal tic has started to become more and more frequent ( whenever she starts to speak its as though she's trying to hold her breath at the same time). I think I may know what has caused it (we went to a swimming pool that was heavily chlorinated )but quite frankly, the constant guesswork that comes with working out her triggers has got me going round in circles.
I would say all of her tics significantly increase whenever she's looking at a screen and this has been true for the last 3 years however after we removed gluten from her diet this lessened a LOT as did most of her tics right up until she jumped into the heavily chlorinated pool!
Therefore I was wondering if there were any members in the UK or elsewhere who have had experience or can advise on:
1- the best place to get further intolerance testing done (both food and environmental). There are a lot of companies offering different types of tests. Has anyone ever used them, what kind of test was it and were you satisfied that the results were accurate?
2 - the best course of action when it comes to getting dietary/nutritional/supplement advice. I spent all last night trawling through 'Chemars' extensive posts on what supplements she used for her son when he was at his worst and whilst I can move ahead with some of the advice ( I'll be buying magnesium taurate tomorrow!), there was a clear message that you should also get professional help to safely tailor the approach to my daughter. Whilst there seems to be a lot of 'allergist physicians' in the States I don't seem to be able to find the same kind of practitioner here in the UK. Could anyone advise?
3- What steps can I do at home to help me feel less scattered and frustrated!?
I appreciate many parents dip in and out of this forum depending on where they're child is at on this 'tic' road so appreciate it may be some time before I get a response (if any) but thanks in advance if you are in a position to give me any pointers.