Tourette's and Severe Compulsions: Life With My Son Raphael

Hi, lovely readers, we've shared a few stories about Tourette syndrome here before. Every time, other affected families reach out, and we think it's so important to let them be heard, too. Because there isn't just one kind of Tourette's. It's a complicated condition, and the families living with it often have big challenges to handle. Our reader Evelyn also has a son who has had Tourette's for many years. She wanted to give us a look into her life and her son's. Thank you, dear Evelyn, and all our love!

My Son Has Tourette's and Severe Compulsions

Raphael is 12 right now, turning 13 in January, and he goes to a middle school with a sports focus. It feels like Raphael has had Tourette's since the day he was born, but it took years to get a diagnosis….

It all started during my pregnancy. I felt awful. I was retaining so much water that I could barely move. On top of that, I had intense mood swings, and I had very few “good” days. In the end, labor had to be induced, and I was in labor for more than 24 hours. When he was born, the umbilical cord was wrapped around his neck twice and he was completely “blue.”

The days and nights that followed were an absolute nightmare for me. It turned out he was what we call a “screamer,” a baby who cries for hours. He hardly slept at night and only occasionally during the day. He also shook his head constantly, so much that he rubbed a bald spot on the back of his head. I assume that was his first tic.

Before Raphael could talk, he blinked his eyes constantly. I took him to an eye doctor, who said it was probably a tic and would surely go away on its own. Next I noticed that he was hopping all the time. When I brought that up with our pediatrician, she also said that tics are normal in kids and most of them simply fade.

With Raphael, though, that wasn't the case. Some tics went away, but others took their place. Once he could talk, he developed vocal tics, too. For example, he said “Maaama” over and over, with a very particular emphasis on the first “a.” At preschool, everyone knew and liked him, tics and noises included. He was well accepted there, and there really weren't any problems.

The first big flare-up came with the move from preschool to elementary school. His tics became very intense. A combination of vocal tics and motor tics made life hard for him. One of them was jumping three times, and if the jumps didn't meet his expectations, he had to repeat them. The tics got so strong in the evenings that he couldn't fall asleep. It weighed on him so much that he sometimes said he couldn't take it anymore and didn't want to live like this. He was six years old at the time.

We looked for help, and a new pediatrician sent us to the university hospital in Linz, Austria. That was where the suspicion of Tourette's was first raised. Over the course of elementary school, his tics settled into a pattern and he could cope with them pretty well. By “settled into a pattern,” I mean this: at school he suppressed his tics as best he could, and in the evenings it all came pouring out. His tics were so loud that we could hardly talk to each other. To burn off the energy, he did lots of sports, and we added craniosacral therapy and massages to help him in every way we could.

Over the years it also became more and more of a strain on us as parents and on his brother, who is two years younger. By the end of elementary school, he desperately wanted to attend the sports-focused middle school, and that's when the condition completely escalated. Raphael couldn't suppress his tics anymore. His tics were so loud that he was no longer “fit for polite company.”

His motor tics developed into severe compulsions. He had to jump constantly. The jumps (flips) had to be perfect, so some days he did 50 flips. On top of that came other frightening compulsions and fears. He had to be clean at all times and washed himself all day long. The skin on his arms was open and inflamed up to his elbows. He was afraid someone would touch him and make him dirty. So you could say it completely spiraled.

His psychotherapist couldn't work with him anymore and recommended a hospital stay. By then we had also finally found a psychiatrist who prescribed a medication to get the compulsions under control. The medication didn't work, and my son kept getting worse, until he finally had to go to the hospital.

There he was checked out thoroughly, and he received the final diagnosis: Tourette's with obsessive-compulsive disorder. That was in the summer of 2023, when he was 10 years old. After the diagnostic stay, we were urged to keep him in the hospital so his medication could be adjusted. We really had no other choice, and Raphael ended up spending a total of 5 months as an inpatient in the child and adolescent psychiatric unit. It was a very hard time for all of us.

The medication, which only started working after many weeks, did clearly ease his tics, but it also came with side effects, including significant weight gain. That was hard on Raphael in turn, because it limited his ability to move, which is why he takes it only reluctantly, and still does.

After the long hospital stay, he was finally allowed to go back to school. But school brought new challenges, too. To this day he hasn't really found his place among the other kids, and the friend he has longed for still hasn't turned up in his class.

Raphael is also just very different. He's different from other kids his age. Besides sports (he does artistic gymnastics), his passion is music. But not the music kids his age listen to. His favorite bands are Led Zeppelin, The Who, Black Sabbath, The Beatles, and so on. He says he'd love to live in the 70s and dress that way, too (I talked him out of that one, because unfortunately he'd get teased even more). He's now pouring his energy into a new passion, too: 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 condition. He tells anyone who asks what he has. Unfortunately, people can be very cruel. He often gets dirty looks, and some people tell him to keep his mouth shut and be quiet.

My son also has a very strong sense of justice. What he wants to be when he grows up is a lawyer. Because of the medication, he's always a bit “foggy,” which does affect his attention. So he isn't exactly the best student, but he scrapes by…

It was very challenging for us to bring our family back into balance after the year everything spiraled, and to learn to deal with the illness. Our nerves were constantly frayed, and the younger brother suffered a lot because most of the attention went to Raphael. Sadly, the little one always got a bit shortchanged. Luckily, we had a family support service that helped us for a few months after the hospital stay, and a therapist still comes to our home once a week to this day. 

These days, we're doing pretty well as a family again. The teen years are knocking on our door and bringing new challenges (just like in every family). Raphael's Tourette's is still very pronounced. He now has an official assessment that his condition severely limits him, and he's getting an Austrian disability ID card. We're hoping it gets a little easier after puberty, since Tourette's can “grow out” by then, or at least studies say it may become more manageable after puberty. 

We're also hoping for alternatives to the strong medications he takes. Next year, an electrical-impulse wristband is supposed to come on the market that has shown very good results. A new medication with far fewer side effects is also expected to come out in 2026. We'll see what happens, and we're hoping for a positive future.

For Raphael, I wish with all my heart that the people around him accept him as he is, and that his condition eases a bit, so that he can fulfill his wishes, especially his dream career.