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.

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