Tourette Tales (TT here for short) is a blogger and mum of three. Her eldest child, George, suffers from Tourette Syndrome.
I am delighted to have TT on the blog and share her journey, from Georges early months to diagnosis and beyond.
It hasn’t been easy for her. TT’s experience has shown that we still very much need to keep raising awareness for Tourette Syndrome as much as ever. Not just in the general public but also from those we hope to receive help from.
At what age was George diagnosed, and what were the tics or signs you noticed that something was wrong?
I first noticed tics when George was 17 months old. Sitting in his high chair one day he started ticking with a head tilt. He wasn’t formally diagnosed until he was 7 years old.
17 months is early for a child to start to show signs of tics, but not unusual. According to the NHS, the average age is roughly 6 years.
George’s diagnosis came much later than his tics, although 7 years old is probably average for most children to start showing tics and getting diagnosed.
I understand that you had a hard time getting the diagnosis, what were the main obstacles you faced?
We first took George to the GP when the very first tics appeared. We were told they were common and most grow out of them.
When George was later seen by Health visitors, Pediatricians and CAMHS* the tics were always brushed aside and the focus was purely on his emotional/ behavioral concerns with CAMHS placing the blame firmly on parenting. The tics were always dismissed out of hand.
*CAMHS stands for Child and Adolescent Mental Health Services. This is the service George used and the NHS states this is an older term within the wider Children and Young People’s Mental Health Services (CYPMHS) that may be available locally.
Did you know about Tourette’s before the diagnosis, or was it something you learned about after seeing a specialist? If you did know about TS, was it more of the stereotypical representation seen on TV or a more accurate understanding?
It is something I was vaguely aware of, but I was very much in the stereotypical camp only having seen main stream representation of Tourette’s in the media. Had we been aware of how the majority of people with Tourette’s present we would have definitely pushed for an earlier diagnosis and wouldn’t have been fobbed off time and time again.
We understand that TS is hereditary, has there been a family history of tics that you knew about? Also it seems George’s younger sister has Autism and ADHD, do you see many similar characteristics in all three siblings?
There is no family history of Tourette’s or tics on either side of the family. Henry doesn’t have any diagnosis or any signs of Tourette’s, Autism, ADHD etc. Faye has Autism, ADHD and a working diagnosis of Mosaic NF1. She doesn’t however have any tics or signs of Tourette’s. George is the only family member with any visible tics.
It is fascinating to find out that there is no apparent family history of tics. This differs from my experience, as males on my dads side seem to have experienced tics in recent generations.
In George’s case, he is the only one, however his sister has ADHD and Autism that are often co-occurring with TS.
It is heartbreaking to read about George asking when his tics would stop, and his sadness when certain medications did not work. Was medication something you talked about with George first and did you feel any pressure to use or not use medication with your family GP? Did it take a few attempts before finding what medication worked best?
We decided on medication shortly after diagnosis. George’s tics were so bad at that point that I would have to collect him from school due to his mouth tics making his mouth bleed so much his school shirt was soaked with blood. George was very much part of the discussion around medication and we had no pressure either way from CAMHS. We were given lots of information about the various medication options and given time to take the information away with us and think about the decision.
George has tried a few medications over the years and adjusted doses occasionally. The combination of medications he takes now is very different from those he started with. Managing his ADHD symptoms is also always a careful balance when changing medication.
Did you change your approach to parenting after the diagnosis? I understand George had some anger as a child, were you able to control this through certain parenting styles?
I would say the anger and behavioral side didn’t improve greatly until he was later diagnosed with Autism and ADHD. This gave us access to more suitable courses and advice. The traditional parenting techniques pushed on us were never going to work as he needed adjustments made to account for his other needs.
What the Tourette’s diagnosis did give George was an answer as to why he was different and just being able to tell people “I have tics because I have Tourette’s, I can’t help it” gave him so much relief and understanding from others.
How old is George now (2021)? I would love to know a little about how you both adapted to Tourette Syndrome over time, and any new challenges either of you faced through the different phases?
George is now 15 and in his final year at school.
The biggest challenge George faced was the transition to secondary school. His tics had not been a big deal in primary school as the children had grown up with his so were quite used to them and didn’t mention them.
Going to secondary school where he only knew a handful of people brought his tics to the attention of others. George’s tics increased significantly during this time, particularly at home as he was desperately trying to suppress the tics at school. Thankfully his school is extremely supportive and he found it easier to manage his tics at school as he settled in and the other pupils quickly understood and got used to his tics being a part of who he is.
Any last bits of advice for parents concerned about their childs tics?
My main advice to parents who have a child with tics is to keep pushing for a thorough assessment. Sadly there is still a lot of misinformation about Tourette’s out there, even among doctors in some cases.
If your child is diagnosed with Tourette, get information and support from trusted sources such as Tourette’s Action. George was shown a video by CAMHS called ‘I have Tourette’s but Tourette’s doesn’t have Me‘ when he was diagnosed which was very reassuring and took away some of the initial fear at a diagnosis.
The media always focuses on the more extreme side of Tourette’s which reinforces stereotypes and isn’t at all helpful for raising true awareness and understanding of the many different ways Tourettes presents.
My advice is to definitely stay away from these shock factor articles and documentaries.
I am very grateful to Tourette Tales for this chat. I wish her, George and the family well and appreciate her efforts in raising awareness for Tourette Syndrome and co-occurring conditions.
You can find Tourette Tales on the following channels:
Blog: tourettetales.co.uk
Twitter: @TouretteTales
Tourettes Action is a support and research charity in the UK. They provided the family a leaflet titled What Makes us Tic? and has been of great value with much information for families and schools.
The website is of great help for anyone needing assistance and can be found here.