Wednesday, 12 June 2019

Tourettes - A Diagnosis

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.

Tourettes - A Diagnosis

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.

Tourettes - A Diagnosis

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.

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...

Sunday, 9 June 2019

A little Bit of News...

Paphos, Cyprus

Well it has been a good old long time since I have dusted off the keyboard and started to write a new post on this here blog.

There are so many reasons why I haven’t, I guess the first and most relevant one is this... Luke and I are in the process of trying to buy a house and sell his flat. We have been in a chain since October 2018, a chain that got within signing reach of exchange... only for Luke’s buyer to pull out just before.

Of course I have my whole house in boxes, the computer is currently on the floor and not really in a place that encourages me to go and type at (hence why I am writing this on my phone #BadBlogger).

Paphos, Cyprus

We did manage to rebuild the chain, but that was short lived and Luke’s buyer was unable to proceed, which meant we lost our dream home once again.

Just this week, we found a new buyer for Luke’s flat. The home we want, our home is still available... so hopefully we will be able to rebuild the chain for a 3rd time.

It is suffice to say that when we do eventually move... I am never moving ever again.

Another big bit of news is, that back in December... Luke finally asked me to be his wife! That is right... we got ENGAGED!

Engagement Idea


I will be writing a more detailed post on this very soon, because it was very romantic and very unexpected, and yes I did cry!

Finally we have had a lot going on with Leo, I won’t go into it all in this post because it’s going to easily be 2 to 3 posts when I get it all down and out of my head. He’s doing brilliantly, but that’s all thanks to the amazing support network he has around him.

Life Unexpected Blog

We have just got back from a holiday to Cyprus, and I foresee a busy year ahead of us. So I thought it was time to dust off the blog and get back to what I love.

Sometimes you just need a long old break to reignite the love you have for something, and I look forward to catching up with everyone.

I have already started drafting up some of our latest adventures, I know that posts have been offline and the tumble weeds have been rife... I will do better and can see 2019 being a great year!