'My son has Tourette’s syndrome': Heartache caused by a missed diagnosis

Non, 51, works for a health organisation as a citizen ambassador. She lives in Surrey with her husband and two sons. Here she shares the challenges of being mum to a child with Tourette’s syndrome.

Watching with horror as my son Tom rocked back and forth on my kitchen floor, convinced he was being attacked by ‘red birds’ and with no clue where he was or that I was even his mother, I was at a complete loss over what to do. He had come home from school after having a violent episode in the classroom – it was completely out of character and I knew I had to seek urgent help.

Needing psychiatric care

We managed to speak to our GP who suspected that Tom might have had a bleed on the brain and sent us to A&E. There, he had several tests which ruled out a bleed but the doctors wanted to admit him.

Over the next week he had test after test but there was nothing physically wrong. In fact, it turned out Tom had had a major mental health breakdown and needed psychiatric help. What is perhaps most shocking is that he was only 10 years old.

Tom’s problems began early in life although we had no idea just how debilitating and frightening it would become. He was born via emergency c-section and as a baby suffered with tummy problems and reflux. At the age of six months, he ended up unconscious after a severe allergic reaction to egg. He developed asthma, eczema and other food allergies and so anxiety around eating became a real problem.

Facial tics and anxiety

Despite some issues, he was a bright and polite little boy. At primary school, the teachers thought he was ‘quirky’ and noted that he didn’t always engage with lessons. Around the age of seven, we noticed that when he became anxious – perhaps around lunchtime – he started having tics. He’d make noises initially and grimaces with his face. But we were told that many children do that and not to worry too much.

Tom could be a model pupil. He was often the boy who would be asked to show parents around school, he did drama and singing, won prizes for his photography and yet we knew there was something not quite right.

In Year four, he had a particularly strict ‘old school’ teacher who dismissed his problems as ‘laziness’ and said that he just ‘had to work harder’. She would humiliate him by ripping pages out of his book or show him up by writing his spellings on the board. Unsurprisingly, his anxiety increased.

Life became more difficult. He stopped eating. His tics, noises and repetitive behaviours were becoming worse, which in turn, made life even more stressful.

As well as making loud noises, he’d constantly ask the same question over and over – ‘How are you mum? How are you mum?’ Then the bad language started – sometimes you could see him literally holding onto his wrists to try to stop an outburst, but it was impossible.

It was in the first week of Year Six that Tom suffered his major breakdown. Clearly under a lot of stress, that week he’d come home from school each night screeching and sobbing: ‘Help me’ and it was so distressing and frightening for him.

Worst case of Tourette’s ever seen

After his breakdown at the age of 10 we were finally seen by a psychiatrist who said that Tom has the worst case of Tourette’s syndrome he’d ever seen. Tourette’s affects around 300,000 people in the UK – and around one in 100 school-aged pupils – yet it’s a very misunderstood condition. A diagnosis requires at least one vocal tic and multiple motor tics for over one year.

We were thrown into crisis. Tom was an easy target for bullies and we were told that mainstream education was out of the question.

We spent thousands of pounds on assessments for him, trying to get more help and discovered that Tom had a neurodevelopmental delay condition which included Tourette’s. We started on medication which helped ease the tics.

Finding the right support

By the age of 11, we had found a specialist school for him and he was introduced to an amazing psychotherapist who really turned his life around. She helped him to accept himself and label his emotions.

It has been a long and harrowing journey involving assessments, referrals, medication and appointments with medical professionals, some of whom are the leading experts in the world for his condition.

Today, while he still struggles from time to time, Tom is managing his condition and his life so much better. He has always loved theme parks and had a holiday job at Thorpe Park where he made lots of friends and no longer feels ‘different’. He’s always loved computers and can make one from scratch. He is now enjoying an apprenticeship at a local computer repair shop where the feedback he’s received from customers has been wonderful.

As he’s matured, the tics have subsided. It’s other people’s reactions to them that can still be troubling but Tom has become better at dealing with it. He’s in a happier and more comfortable place and we’re incredibly proud of him.

For more information on Tourettes visit tourettes-action.org.uk.