Monday 10 June 2019

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

Tourettes symptoms and diagnosis

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.

Tourettes symptoms and diagnosis

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...

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