My mum and dad first noticed my tics when I was around 5 years old in a school play and I was just doing small little things like opening my mouth as far as I could and doing little nose twitching. At first, we didn’t think much of it until about year 3 at school when I started to feel very light headed and faint all of a sudden.
Now we know that I had a tic which was to hold my breath and usually it would happen when I was in a classroom situation. At the time the school that I was at felt that we should go to the doctors to find out what was wrong. We ended up being referred to a paediatrician at the local hospital who I have to say wasn’t the nicest of people, in fact, he was horrible but did carry out some tests as he thought that it might have been epilepsy causing absent seizures. The tests showed no sign of epilepsy. So from that point on I only did part-time school, which is called flexi-schooling and it is legal to do so in the UK if the headteacher agreed which mine did because of the medical side of things.
On the 16th of November 2015 was when everything turned upside down.
I started to have around 1000 full body tics every day which was completely disabling so my parents had to make a little room for me that was safe so there were lots and lots of pillows and a mattress that was on the floor so that I couldn’t fall off my bed when I ticed. I spent all my time in that room if I wasn’t at the hospital, I would even eat in there. At the time no one knew that it was Tourette’s so they were checking for other things too. I had a brain scan done, but because of my tics, I had to have a general anaesthetic. I even had a couple more epilepsy tests.
I then also got referred to CAHMS and they decided with my paediatrician that I should start to take a medicine called Clonidine. Clonidine is a blood pressure lowering medicine so it was an off-label use and you have to go on it very slowly step by step because of the blood pressure side of things. One of the side effects was chronic fatigue. Then I had one more Epilepsy test which was an EEG which is where I had loads of wires stuck to my head that were then attached to an electrical box that was in a little satchel that I had to go home with all the wires still on me and then go back to take them off two days later!
Once my Clonidine dose reached a certain level (at my maximum I was taking around 300mcg a day) my tics were just about manageable, so I went back to flexi-school for the first time in three months and only for the mornings as I was still finding eating tricky – tics and food create flying food that rarely got to my mouth! It was quite a big step for me as I was very anxious due to not having been at the school for so long, and also I was never sure when I would tic and hurt myself. CAMHS really helped with my transition back to school and supported me, my family and the staff at the school.
Then I got referred to Great Ormond Street Hospital in London (GOSH) and met with Dr Tara Murphy who is a consultant paediatric neuropsychologist and clinical psychologist. That was when I got my proper diagnosis of Tourette’s and OCD (obsessive-compulsive disorder). I started to do a therapy via Skype every week for the whole of the summer holiday. I did ERP (exposure response prevention) which is basically where you learn to resist the urge to tic for as long as you can so that when you are going up a flight of stairs you can suppress until you are at the top of the stairs for instance and that seemed to work really well for me.
In the Christmas holiday of year 7 I started to get lots of foot and leg tics so I was really struggling to walk and by the end of the holidays I could only walk about a metre or less than that before I ticed. In the end we had to rent a wheel chair whilst we looked for one to buy. I also started to use crutches around the house and for really short distances. This was really weird for me because I had never had to use a wheel chair ever before so I struggled to adjust at first. My normal paediatrician had to refer me up to a doctor in Bristol because she felt that she didn’t have enough knowledge to treat me and in the end I ended up staying in Bristol Children’s Hospital on one of the wards for a week for observation.