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.

Tic's, Anxiety & back to the Doctor's

One of the reasons that this blog has been a little (OK neglected) quiet is that with Leo being that much older these days, I’m that more cautious in what I share. I think that is only natural, and as bloggers we have to take a step back and not ‘over share’ in the way we did when they were younger. 

I’ve shared Leo’s struggles with education over the years, and with recent developments I feel that I need to share these posts. 1. To raise awareness and 2. To promote acceptance to diversity.

Some of you may remember me talking about Leo and his tics, when I say tics I mean involuntary movements that he has no control over. 

Some of which are...

Throat clearing, head tilting, lip smacking, squeals, facial grimaces to name a few. 

Stress and anxiety play a pivotal role in being the trigger for the tics to escalate, and a big factor in the nature of Leo's tics.

It all seemed to kick off most profoundly when we were on holiday last year, I noticed that Leo was contorting his face and grimacing on a very regular basis. It become noticeable to my whole family while we were away, and when we got home I mentioned it to Luke.

Luke quickly dismissed it, but then when we went out for dinner one night, he realised for himself. This was July 2018, and I gave it a few months to see what happened with it, but by October it was still a regular occurrence and I decided to book Leo in at the doctors.

We went along and I explained what was going on. I have to be honest and say I was thinking Tourettes, and that is why I was pushing for a referral to finally see a Paediatrician. The Dr at this point didn’t think it was necessary. She said it was more than likely just a phase, one that he would grow out of, Luke was quick to agree with her.

I on the other hand kept on pushing for the referral. 

I left thinking that we weren’t going to get one, but it later transpired that she had indeed referred us. It didn’t come through for months though, and that took us into this year, I want to say March.

It was a cancellation appointment that we eventually received, which I welcomed, but by this point Leo’s tics had really dropped down, and seemed to have gone away for the most part. Still I gladly accepted the appointment, and we went along as a family.

I took the morning off work, school let us pick Leo up and take him (not that they had ever really noticed the tics in school at this point) and off we went.

It was at our local hospital, a nurse called Leo’s name and then they took his height and weight in readiness to work out his BMI, which I knew was ideal.

Then it was time to meet the Paediatrician, he asked us questions, and then asked Leo questions. Some things were just directed at Leo, and others were based just off of his personal observation. 

Leo’s tics were pretty much none existent on this day, not like they were back over the summer and the end of the year. In fact it was almost like the Dr had been right, and it was just a phase.  

It was no surprise to me when we were discharged (all be it with an open invitation to return if needed), which at this point, I didn’t think we would be needing....

April rolled around quickly, just as the months always seem to do these days, it was quickly approaching Easter and the children were all dreaming of the Easter Bunny and chocolate. 

I was on the school run, just like I do everyday, the bell rang and his teacher was spotting parents and matching them up with their children. 

I spied Leo, and out he came. Throwing his bag at me for me to carry so he could run around. I asked him how his day was, he replied but there was something different. There was a squeal. A high pitched squeal. 

A squeal coming from Leo every couple of seconds. We got back to the car, it was still there. 

We drove home. It was still there and boy did it make me jump on a number of occasions.

We got home, he did his reading, he was so twitchy. His faces were back, he was hitting himself. And there was the squeal.

I knew this was a tic, he has had it briefly before but never as aggressively as this. I didn’t mention it to Leo, one way to really knock a child is to tell them to stop doing something that they have no control over. 

I’ve always found the best way to deal with tics is to just ignore them, but when it’s s vocal tic with the nature that this one had, I knew I was going to have to address if first thing in the morning at school. 

Leo did bring this tic up with me though, he told me how he was worried he was going to get into trouble and that he couldn't help it. 

I ran Leo a big bubble bath, I got him into his PJ’s and read him a story.

The squeal continued. 

Once Leo was tucked up in bed, I went downstairs. I sat on the sofa in silence and the squeal continued, it went on until eventually Leo fell asleep.

The next morning I took Leo to school. He went in absolutely fine, but inside my own stomach I had that sinking feeling, the feeling that meant I didn’t want to send him in. I just had a foreboding feeling that this was not going into be a good day.

I spoke to his teacher. I played her a recording of the squeal so she could gauge how consistent it had been over that evening. I explained everything I have written here in this blog entry. She had not noticed it the day before, and I couldn’t put a marker on what would have caused it, he had been his usual self that morning previous as I dropped him off.

My biggest concerns were other children being nasty, or Leo getting in to trouble for being disruptive. 

Then I went off to work. By about 1 pm that day I had a call. A call from school. I knew it wasn’t good news. 

It was our SEN teacher advising me that Leo’s squeal tic had been very prominent in class, and it had caused class mates to laugh at him. Some told him to stop, others that he was annoying... it didn’t help his confidence one little bit, and I knew that this would have knocked him for 6.

I was tearing up, the last thing I wanted to do at work, but they fell none the less. 

Leo was upset so they had taken him out of class and created a worry box, they discussed things he was worried about, and while Leo wasn’t in class, they spoke to the children about kindness and how Leo couldn’t help it, and he couldn’t stop it.

It’s a hard thing to explain to a class of 7/8 year old's.

This was 2 days before the school closed for half term, I asked the SEN teacher to put this In writing for me so I could use it as evidence for the doctors appointment I was going to be booking. By the time I collected Leo that afternoon, I had the written evidence in my hand.

Leo was so twitchy. It broke my heart, he looked broken. The squeal was still there, his shoulders twitched and his head was flicking. 

The tics were back worse than ever.

Some of the boys he called friends had fallen out with him. But other boys had taken him under their wing, and for that I will be forever grateful. 

I spoiled him rotten that night. A trip to Tesco’s for a new tin of Pokemon cards, the new boys he was playing with had battles at lunch, and Leo wanted to join in. A tub of lavender Radox, lavender spray for his pillows and a McDonald’s for dinner.

We got home and I knew I had to try and get him as relaxed as I could, and that was the start of our nightly bubble bath I would run for him regardless as to whether or not he needed one.

I called the doctors the following morning and explained I needed an urgent appointment with our doctor as soon as possible. I wanted her to see the tics and how aggressive and frequent they were at this point. 

We got one quickly, the squeal tics were still there when we went, which in a way I was pleased about because it meant she had no choice but to hear it, to witness it as we all had.

As we sat in the waiting area, the tics came fast and thick. I could feel the watchful eyes of other people, other parents judging me. Silently telling me to address the situation with my 'disruptive' child.

I sat there daring anyone to address me. Nobody did.

 Our Doctor called us in. I told her we needed referring again, and she agreed it could be neurological. Which was a step in the right direction, and eliminated the phase idea that was proposed on our last visit. 

Now it was a waiting game again.... but thankfully we were lucky enough to get another cancellation appointment in May.

To be continued...