Dear ones, we have already had several reports on the subject of Tourette syndrome here. After the reports, other affected families keep getting in touch and we think it’s so important to let them have their say too. Because there is no one Tourette’s syndrome, the disorder is so complex and the families affected often have major challenges to overcome. Our reader Evelyn also has a son who has had Tourette’s for many years. Evelyn wanted to give us an insight into her life and that of her son. Thank you, dear Evelyn, and all the best!
My son has Tourette’s and severe compulsions
Raphael is currently still 12, he will be 13 in January and currently attends a sports high school. Raphael has had Tourette’s since birth, but it took years before he was diagnosed….
It all started during my pregnancy. I was feeling really bad at the time and had so much water that I could hardly move. I also had severe mood swings and very few „good“ days during my pregnancy. In the end, the birth had to be induced and I was in labour for over 24 hours. He had the umbilical cord wrapped around his neck twice at birth and was completely „blue“.
The days and nights that followed were a nightmare for me. It turned out that he was a so-called „cry baby“, he hardly slept at night and only occasionally during the day. He was also constantly shaking his head so that he was bald at the back of his head – that was, I assume, his first tic.
When Raphael couldn’t talk yet, he kept blinking his eyes. I then took him to the ophthalmologist, who actually said that it was probably a tic and that it would certainly go away.
The next thing I noticed was that he was constantly jumping. When I mentioned this to the paediatrician, she also said that tics are normal in children and that most of them simply disappear again.
However, this was not the case with Raphael, some tics disappeared, but others were added. When he was able to talk, he also developed vocal tics. For example, he constantly said Maaama – with a special emphasis on the first a. He was known and liked at nursery with tics and noises, he was well accepted there and there were actually no problems.
The first major outbreak began when he moved from kindergarten to primary school. His tics became very intense – a combination of vocal tics and motor tics (jumping three times and if the jumps didn’t meet his expectations, they had to be repeated) made life difficult for him. The tics became so severe, especially in the evening, that he could not fall asleep. It bothered him so much that he sometimes said that he couldn’t take it any more and didn’t want to live with it. He was six years old at the time.
We sought help and a new paediatrician sent us to the university hospital in Linz. It was there that it was first suspected that Raphael was suffering from Tourette’s. Over the course of his primary school years, his tics levelled out and he was able to deal with them quite well. Levelling off means: at school he suppressed his tics as best he could and then in the evening everything always came out. He would tic so loudly that we could hardly have a conversation. He did a lot of sport to relieve the energy, plus cranio and massages to help him as much as possible.
Over the years, he also became an increasing burden for us parents and for his brother, who was two years younger. At the end of primary school and his intense desire to be allowed to go to sports high school, the illness escalated completely. Raphael could no longer suppress his tics. He tics so loudly that he was no longer „socially acceptable“.
His motor tics developed into severe compulsions. He had to jump constantly. These jumps (somersaults) had to be perfect. So he would do 50 somersaults a day. He also had other frightening compulsions and fears. He always had to be clean and washed himself all day. The skin on his arms was open up to his elbows and inflamed. He was afraid that someone would touch him and soil him. So you could say it escalated completely.
His psychotherapist could no longer work with him and recommended that we go to hospital. By this time, we had also finally found a psychiatrist who prescribed him a medication to get the compulsions under control. The medication didn’t work and my son got worse and worse, so in the end he had to go into hospital.
There he underwent an intensive check-up and was finally diagnosed with Tourette’s with obsessive-compulsive disorder – that was in the summer of 2023 – he was 10 years old at the time. After the diagnostic visit, we were advised to keep him in hospital and have him medicated. Unfortunately, we had no other option and so Raphael remained an inpatient in the adolescent psychiatric ward for a total of 5 months. A very difficult time for all of us.
The medication, which only took effect after many weeks, significantly alleviated his tics, but also had corresponding side effects such as a strong weight gain – this in turn was very stressful for Raphael, as it restricted his movement, which is why he was and is reluctant to take the medication.After the long hospitalisation, he was finally allowed to go to school. However, school also presented us with new challenges. To this day, he still doesn’t really connect with the pupils, and he still hasn’t found the friend he’s longed for in his class.
Raphael is also very different from other children his age. Besides sport (gymnastics), his passion is music. But not the kind of music that children his age listen to. His favourite bands are „Led Zeppelin“, The Who, „Black Sabbath“, „The Beatles“ etc. He says he would love to live in the 70s and dress like that (I talked him out of it though, otherwise he would be teased even more). He now also puts his energy into his new-found passion – playing the drums. Raphael is a really cool kid, very flamboyant, he just doesn’t fit in with the teenagers his age.
Raphael is very open about his illness and tells anyone who asks him what he has openly about his condition. Unfortunately, society is very cruel. He is often looked at stupidly and some people tell him to keep his mouth shut and be quiet.
My son also has a very strong sense of justice. His dream career would be to become a lawyer. He is always a bit „foggy“ due to the medication, which does affect his attention. That’s why he’s not exactly the best at school, but he cheats his way through…
It was very challenging for us to harmonise our family structure again after the year of escalation and to be able to deal with the illness accordingly. Our nerves were constantly frayed and the younger brother suffered greatly as our attention was mostly focussed on Raphael. Unfortunately, the younger brother always got the short end of the stick. Fortunately, we had a family helper who supported us for a few months after the hospitalisation and a therapist still comes to our home once a week to this day.
In the meantime, we are doing quite well as a family again. Puberty is now knocking on our door and presenting us with new challenges (as it does in every family). Raphael’s Tourette’s is still very pronounced. He now also has a certificate stating that he is very severely impaired and he is now also getting a disability pass. We are now hoping that it will become a little more bearable after puberty, as the Tourette’s could still „grow out“ by then or studies say that it could become more bearable after puberty.
We are also hoping for alternatives to the strong medication he is taking. Next year, an electro-pulse bracelet is to be launched on the market, which has achieved very good results. A new drug is also due to be launched in 2026, which should have significantly fewer side effects. In any case, we are in for a surprise and hope for a positive future.
I sincerely hope that Raphael will be accepted by those around him for who he is and that his illness will be somewhat alleviated so that he can fulfil his wishes, especially his career aspirations.
