Thursday 31 October 2019

A Tourettes Update

7 months ago Leo was diagnosed with Tourettes Syndrome, this was off the back of a particular tic that came into the equation just before Easter last April.

The squeal tic as it has come to be known in our house likes to materialise during periods of high anxiety for Leo. God I hate writing that my little boy suffers from anxiety, it really is something that i wish I could take away from him and make all OK. Unfortunately all I can do is be there for him, listen to him, advocate for him and help him navigate where we go from here.

As with everything in life, there is no magic potion that just fixes all of our problems and insecurities, but oh how I wish that there was.

Tic wise we had been doing incredibly well, the squeal tic that has materialised in April had faded to nothing over the course of a few months. Leo doesn't take medication, it was something that we decided wasn't essential at this stage (and I hate the idea of side effects), this was off the back of the diagnosis appointment.

We were pretty much tic free all over summer (apart from the usual motor tics that we just consider normality), but with the end of summer and the return to school on the horizon.... Leo's squeal tic came back for round 2, and it was more persistent and aggressive than ever before.

Leo's anxiety is based around his school life, he worries about the work expected of him and finds it difficult which in turn makes his anxiety heighten.

It's a vicious circle.

The week before Leo returned to school, we went to purchase his new school shoes for the coming term ahead. Leo chose the ones he wanted and we went on our merry way. That night after I read Leo his story and tucked him up into bed.... the squeal tic materialised. 

As soon as I heard it my heart sank. I knew he was feeling anxious about starting year 4 and unlike you and I....Leo can't contain that anxiety (and I keep telling him to just let those tics out, but due to the nature of the tic he gets very self conscious about them and attempts to hold them in).

With the return to school getting the closer, this particular tic kept getting more persistent. The squeals were relentless and always worse at night. On that first day back at school I discussed it with his new teacher (and thankfully she was already very aware about the Tourettes diagnosis), and at the end of the day I caught up with her again to be told that she hadn't heard the squeal tic at all that day...

That afternoon and into the evening, the tics kept coming and coming. They kept coming until he finally succumb to sleep. Which was well after 10pm that night despite having a relaxing lavender bath, story and being in bed fro 7pm!

Those first few weeks at school were horrendous, the squeals were constant, louder then ever and just kept coming one after another.

It was made even worse because he was holding the tics in at school, so when he came home and was in his safe place, the tics rolled out of him like someone had shaken up a bottle of Pepsi and then took off the lid. 

It is now November and the squeal tic is still here, it's been here for over 12 weeks. It has been varying in intensity over the last few weeks, and I was optimistic that we might be seeing a decrease in the severity of this particular tic, but over the last few days it seems to be heightening again. 

Although if you were to compare it to those first few weeks at school where I would certainly say it was charting a 10, it is now currently at more of a 6.

We popped to our local Aldi last night and Leo was ticcing as he went around. Yes he had some funny looks (as did I) but nobody said anything, and if they had dared I don't really think I would have been able to hold back. 

I am so fiercely protective of my boy, they would not have liked the response if they had dared tell me to make him stop.

It's the shop my brother works at, and he had already explained to a number of the people that he works with that Leo has Tourettes, so that made life a little easier. 

We have finally had our appointment through for Leo's first Paediatric appointment since the diagnosis, which I am really glad has come through. I was worrying that we had slipped through the cracks as the lady we saw for the diagnosis has now retired, but thankfully the letter arrived and we see the new Dr on November 19th.

I am still not ready to talk about medication, because I know that as soon as we can get Leo's anxiety back to a more realistic level.... We may very well see the demise of the squeal tic again. I do worry about every holiday that comes around now, because I know that with the return of school will come a wave of anxiety that we will ride for months at a time. 

That may very well be the reason that the tic is escalating more than it was because half term is almost up...

I have recently treated Leo to a aroma diffuser in his room that diffuses aroma therapy oils, and upgraded his night light to a bubble lamp, I am hoping that these small additions help to relax him.

 Another change we have implemented is a later bed time...I have done this because when I put him to bed at 7pm (like we always have) because he ends up staying awake later ticcing. If he stays awake later he is usually less ticcy and goes to sleep faster... and I like to think that the anxiety is less so he gets a better nights sleep.

If I am honest it is all trial and error at the moment, all I can do is continue to educate people about Tourettes and help Leo navigate his path. 

I will update again once we have had this next appointment, but I would like to try and get Leo in for some CBT (Cognitive Behaviour Therapy) as I feel this will help him focus his attention and maybe help him combat his tics into other avenues.

Regardless of Leo's Tourettes and Tics, I am so proud of the little boy he has become. He has been dealt a difficult hand but it never stops him, he has some great friends and his compassion for other people is incredible. 

Leo is a true superstar and I know that this too shall pass. He will come out the other of this, and I will be there to help him with whatever comes his way next.

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