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.

Tourettes - A Diagnosis

We were on our way home from the school run when my phone began to ring. I pulled the car over to find it was an unknown caller ID, I had a feeling it would be about a potential paediatric appointment for Leo. It hadn’t been all that long since we saw the doctor, but I had told her I wanted to be seen as soon as possible.

I missed the call and had no way of calling back, so I could only hope that they would try again. As luck would have it, they did.

I tentatively answered the phone, it was the reception at the clinic. They were advising me that they had a cancellation appointment for the very next day, which of course I snapped up. 

I am very lucky in the sense that work allow me to be flexible, and I knew that school would be more than supportive of us getting back in front of the paediatrician.

I told Leo that we were going back to see the doctor in regards to his tics. Leo and I have talked about his tics in the past, he knows what they are, and we’re very aware that the more anxiety he feels, the more the tics manifest themselves.

Leo was really pleased that we were heading back to the doctor in the wake of the squeal tics that had exploded just before they broke up for the Easter break. Thankfully over the half term they had begun to relinquish their hold, but he was still very twitchy.

When I say twitchy I mean, facial grimaces, blinking, head tilts, lip smacking and even hitting himself. I ignore them all, I want him to let everything out, I want him to feel comfortable and I want him to know that at home with his family is his safe space. When he has attempted to hold them in at school during the day, they fly out like sausages sizzling in a pan. 

I’m certain that’s what happened with the whole squeal tic.

The appointment on this occasion wasn’t at the local hospital, it was the medical centre. As it was a cancellation appointment I didn’t have a letter, just a post code. Luke arrived at work late to pick me up, which meant we to got into town at exactly 10am with no time to spare (yes I was absolutely fuming). The medical centre is in a row of 3 buildings, one being a doctors, one being a pharmacy and the last one being what we needed, if only I had known the exact building...

I wandered into the doctors, lined up for 5 minutes (taking me past our appointment time) only to be told we weren’t in the right place, I was getting so panicked. I had waited years to get in front of this particular paediatrician, and we had MISSED it!

I started plodding back to the car, defeated. When I came across the last building.... and I thought ‘I wonder!’.

Leo and I ran up the stairs to reception, who confirmed that we had found the right place and they would check to see if she would still see us. 

I sat there with everything crossed.

Seconds later the paediatrician walked into the reception and beckoned us to follow her back to her office.

We sat down, and she started talking to us, she already had all of Leo’s information on her computer screen. Details of the last appointment with her colleague, the letter from school about the squeal tic and lots of other historical information. We had recently had an updated educational psychologist in school, which I emailed over to her while we were in the appointment so she could get a feel for how things were going on an educational footing.

She asked Leo questions, Leo answered. She said something along the lines of ‘I can see your having issues with your hands’, I cannot remember the exact wording, but Leo was doing his twitchy tics as I described earlier. I was just glad that they could be observed.

I told her my worry was that she was going to discharge us. I told her I thought that was wrong and that we needed to be on her books going forward. Leo needed the support from the professionals now.

Within about 5 minutes, we had a verbal diagnosis.

‘I think it’s fair to say that because the tics have been in play for over 12 months, and there has been a vocal tic combined with motor tics, I am quite happy to diagnose Tourettes’.

I could have thrown myself across the room and hugged this woman. Finally a reason for Leo as to why he can’t help doing these things. Finally a reason for him to tell people who ask why he can’t stop. 

Finally just a reason.

Leo and I had spoken about Tourettes before, he knew it was just a medical term for his tics. But it means that I could go into school and they could explain it to his class mates.

We talked about potential medication, and both said simultaneously how we didn’t want to medicate. 

She was happy that I was of the same mindset as her. We discussed a potential CAHMS Route at some point in the future if needed, so we could access CBT (Cognitive Behavioural Therapy). At this point though we both agreed that the best way to was to try and manage Leo’s anxiety.

Something we strive to do anyway. The problem is a lot of Leo’s anxiety stems from finding school difficult. Leo goes into year 4 this coming September and I know he finds the expectation very difficult, and I’m sure this is why the squeal tics came to the surface. 

The doctor told us that we would review in the next 6 months, but now we were in the system, if there was a sudden flare up we would be able to get an appointment quicker, and we would get seen. 

So that was that, the appointment came to a close, and it was back to work and school. 

Only this time with a diagnosis.