One Family’s Journey to Finding Hope & Support For Tourette Syndrome
February 6th marked the commencement of Children’s Mental Health Week. With that in mind, I found myself spending the past few weeks thinking back on my family’s story, on our journey to a Tourette Syndrome Diagnosis and beyond; perhaps my chronicle will help someone avoid the frustration and heartbreak we’ve experienced. My children are only two out of what is likely thousands island-wide who are suffering, mostly in silence. Our journey started over a decade ago and while we’ve still got a long way to go, for now I know I’m no longer alone and that there’s a chance for a better life.
I’m a single parent of two wonderful, gorgeous kids; Ryan, who’s 16, followed closely by Sophie, three years his junior. Both of my children are funny, caring, lovable kids. Ryan, who was always an extremely hyper kid, was a chatterbox as a small boy. He always seemed on the go, so boisterous and full of life.
He was also very clumsy, and by about 6 had developed a stammer. That was about the same time that I began to notice that he was becoming easily frustrated. These periods of frustration would grow out of nothing, sometimes to the point where he would smash everything, including his own toys. Every so often his aggression was aimed at his sister or myself, and create a situation that was incredibly stressful for our family. To try to redirect his frustrations I bought him a punch bag. For a while this worked amazingly well.
Around this time I’d also begun to notice that he was making odd noises, doing strange little coughs, and having odd movements like sticking his tongue out randomly or stretching his face. He didn’t seem to be doing these things purposefully and mostly didn’t seem aware of his actions. He wasn’t able to focus and was very easily distracted. His teachers had even begun calling home to complain about his behavior, yet when I approached his primary school to ask for him to be assessed they refused.
I reached out to our General Practitioner (GP) who sent a referral to our local Child and Adolescent Mental Health Services (CAMHS) for an assessment. The wait seemed to drag on before he was finally seen. After only a few appointments, they released Ryan from their practice, telling me that they weren’t seeing any of the behaviors or out of the ordinary movements I’d seen him doing. I was shocked. Everyone around us, including teachers, friends and family, could see. How could they not?
So we carried on; very alone, very confused and without help. Three years went by.
Ryan, now 9, was still doing all of the things we’d noticed before, especially (and increasingly) all of those odd
movements. On top of that, I began noticing little things about Sophie, now 6, that were concerning. She went through a phase of washing her hands quite a lot, even carrying soap everywhere she went in fear that there might not be any when she needed it.
She’d always been such a happy child, so loving and affectionate and had an incredibly close bond with her brother yet I could feel something was off, so I was relieved when this particular behavior seemed to wane after about six months.
One night I happened to catch a programme about children that had Tourette Syndrome, a neurodevelopmental spectrum disorder that was characterized by vocal and motor tics. It was like I was seeing my son on that screen. Finally there was a name for what Ryan was doing! ! I realized in that moment that my son had Tourette, and that the odd movements were tics. I knew in my heart that he likely had ADHD as well, which frequently goes hand in hand with the tics of Tourette.
I approached our GP again for a referral; truthfully, I wasn’t even sure where to be referred. I just knew something needed to be done. His response to my request was to inform me that the reason why my son had spent years involuntarily twitching, making noises and doing other odd things was dehydration. I was stunned and deflated. I’d finally found an answer only to realize I might not be able to access help. After a pep talk from a friend I rallied and marched right back to our GP, this time demanding a referral letter. He gave in and referred Ryan to be seen in the neurology department at Our Lady’s hospital.
When we arrived for that appointment I was full of hope. Ryan was ticcing away while speaking to the doctor and I knew that this time they’d give him a diagnosis and we could access services which could help him. Yet when the doctor did a short assessment (which seemed to only take a minute or two), he got nervous and held his tics in. Even though she’d clearly seen him ticcing the rest of the time there, she refused to diagnose him with Tourette Syndrome, instead telling me to once more get a referral for CAMHS. I left that office completely defeated. We were back where we’d begun.
Ryan’s tics began to dramatically worsen and I dealt with them entirely on my own, without even basic information, and continued to fight for him to be seen at CAMHS again. It was two full years before we were told that he would be seen at the Cherry Orchard hospital CAMHS unit. I wasn’t expecting much when Dr Marguerite McCarthy came into our lives and changed everything. She was amazingly patient and unbelievably caring in treating Ryan. She spent the entire hour of our first appointment chatting with us, observing Ryan and before we left her office she’d officially diagnosed him with Tourette Syndrome. Dr. McCarthy explained that in future appointments she would do ongoing assessments for the conditions associated with Tourette such as ADHD/ADD, OCD and more. She never got the chance.
Ryan’s tics had reached a peak and were overwhelming every appointment – and our lives. He’d just entered secondary school and now he had both loud screeching tics and complex whole body tics. He became embarrassed and overwhelmed, resulting in his struggling to hold in his tics during the school day – only to make things ten times worse. Every single day after school it would take me over an hour to calm him down as he had explosive tics over and over. Those days were filled with a lot of tears, on his part and mine.
His homework would take hours with me by his side trying to calm him each step of the way. Because of his tics he’d rip the page he was writing on, break his pencils, scribble all over his work, throw his books and more. Ryan’s school had been amazing to him right from the start, and for this I was grateful. They were so understanding with him that eventually he was comfortable enough to tell teachers and other students that he had Tourette. I cannot explain how much of a difference just knowing that they cared made.
Still, Ryan struggled with his tics. His vocal screeching was so loud that his throat would be raw and sore, and at one point became so intense that I even kept him home from school for several days. I was certain I couldn’t send him in with his tic being so loud, yet when I contacted the school to explain they told me they were there to help and to never keep him out of school for tics!
Instead, together we worked out a plan that would allow Ryan to arrive to school a little late each morning. This would allow him to walk through the halls without screeching in front of everyone else and help him avoid feeling overwhelmed or ostracized. It worked wonderfully. With all of us working as a team things at school slowly seemed to get better. I was amazed though, that throughout all of this, even with everything he was going through and all of the upsets, Ryan was still the same fun, loving and lovely kid he’d always been, joking around and being silly.
We continued ongoing appointments with Dr. McCarthy at CAMHS and the decision was made to medicate him for what had become extreme anxiety. Dr. McCarthy explained that the reduction in anxiety would hopefully lead to a reduction in tics. After a lot of trial and error with different medications, it finally worked; his anxiety began to melt away and his tics began to lessen. CAMHS set up fortnightly appointments to monitor him. Eventually the appointments became monthly and then quarterly. Our lives began to calm down and everything seemed to level out.
Finding Out What I’d Missed
I didn’t realize until then how much stress I’d been under. I looked around me, filled with guilt, as I realised that with all of my own anxiety and worry over Ryan, I’d managed to overlook Sophie. I began to notice that some of the odd things she’d been doing and the behaviors she’d been displaying when she was young were back again. I also realized that they were quite likely signs of ADD/ADHD and OCD. Unfortunately, because I still wasn’t given a lot of information on Tourette Syndrome, I wasn’t aware that it was common for siblings to have some of these associated disorders. I assured myself that while there were some issues, they still didn’t seem to be overly impacting her life. I promised myself I’d keep a good eye on her and let things be for then.
After seeing Dr. McCarthy for about a year she dropped the bombshell that she was leaving. We were devastated but she assured us that we would be well looked after by the next doctor. Because Dr. McCarthy had spent so much of her time working on managing Ryan’s tics and his anxiety we’d never had the chance to have a full assessment for the associated conditions. Now with things being under control the other symptoms he’d been having were beginning to make themselves shown with a new fervor. It was clearer than ever that he was dealing with ADHD and OCD, Executive Dysfunction and what appeared to be Sensory Processing Disorder (SPD). We saw this new doctor twice and during those appointments I requested full assessments. I left the office with a ton of paperwork for myself and the school to complete and the promise that once completed and the paperwork returned done the doctor would be in touch with an appointment.
A few weeks later I sent the completed paperwork in, expecting to receive a call yet I heard nothing back. Eventually I rang to see when we might come in and was told someone would return my call. No one did. I tried ringing again, and again…each time I would be told someone would call me back and each time no one ever did. It was a full eight months before I finally reached someone who informed me the the new doctor who’d given us the paperwork had left that practice almost six months previously! I was flabbergasted. I asked for an appointment with whomever had taken their place, only to be told that it would be at least a month for them to settle in before they’d be able to see Ryan. Not surprisingly a month came and went and no call came. Ryan was 14 and had yet to be given a full assessment.
While we waited, both Ryan and Sophie began to have an upswing in their symptoms. For Ryan this included explosive rages and meltdowns, something I now know affect many children with Tourette. He began feeling frustrated at his inability to control his own body and depression set in. There never seemed to be a good day for both at the same time. I was at a breaking point and decided to do my own research and learn what I could about Tourette Syndrome hoping to find something that might help our family. I was shocked to read that up to 70% of those with Tourette also say that they have problems with uncontrollable anger. No one had ever told us this was something to be aware of.
All the while I continued leaving messages for CAMHS, explaining our need for urgent help yet never getting anywhere. It was frustrating, emotional and exhausting.
I’d been fighting for nearly ten years by this point and began to feel as if it was a losing battle. All I could think was that I was fighting this alone and without any help.
“Explosive outbursts can be distinguished from the more common “temper tantrums” by their magnitude and intensity. Unlike temper tantrums, these outbursts occur at an age when such symptoms are no longer regarded as age-appropriate.” (Explosive Outbursts in Children With Tourette’s Disorder – CATHY L. BUDMAN, M.D., RUTH D. BRUUN, M.D., KENNETH S. PARK, B.A., MARTIN LESSER, PH.D., AND MADELYN OLSON, M.D., 2000)
Feeling More Lost Than Ever
By the age of 15, all of Ryan’s symptoms were simply out of control. He was having constant rages and meltdowns. For children with Tourette Syndrome, these meltdowns aren’t ‘tantrums’. In a tantrum there’s a goal, some outcome that they want; for Ryan there was no rhyme or reason. He would become aggressive, shout and argue – yet not make any sense. My sweet, loving, kind child would become someone completely different. Laughter in our house began to wane along with periods of peace. We were in need of help.
By the age of 16 my gentle giant was having non-stop rages during which he’d say terrible things, leaving me concerned about his sister being alone with him. While Sophie understood his conditions it would still be upsetting to her. By this point, Ryan was only able to last about ten minutes in any place with loud noise or lots of people like stores and markets. Our daily routine, my work and our whole lives were being affected. Ryan’s teachers had begun calling again, concerned that he seemed so unhappy, so disinterested in anything.
I tried to focus on the only things that seemed to help him; music and laughter. My hope was that if we could laugh at ourselves Ryan won’t be as hurt by other people laughing at him or mimicking his tics.
But these moments of joy were becoming fewer and farther in between. All this time I’d continued attempting to get an appointment with CAMHS, explaining each time that Ryan urgently needed an appointment all to no avail.
I cannot underscore how immensely stressful and upsetting it is to watch your child struggle so intensely and be unable to access services which might give them relief. It’s utterly gut wrenching to be ignored by those who hold the key to that help. It took a toll on my health and wellbeing. I had begun to feel like a failure as a parent.
Finally, I decided that neither my children nor I could take it anymore and I was no longer willing to take no for an answer. After dogged pursuit I managed to get a doctor from CAMHS on the phone. He told me that they were moving locations and he wouldn’t be able to give us an appointment. I refused to accept being brushed off again and wouldn’t get off the phone until he agreed to arrange for Ryan to be seen. The appointment would be in two months. Relief began to flood in.
Until two months came and went, and still we had no appointment.
Worse, Sophie had begun to struggle. What had once been just on the surface was now seemingly severe OCD and ADD/ADHD. More than that, I’d now begun to see her tic. No one had told us that there was an hereditary component to Tourette.
Concerned about her school work, her building frustrations and difficulties with learning, I was able to get a referral from our GP for her to see the School Aged Team (SAT), something I’d never heard of before. While I was happy to get the referral, it was daunting to think on how many years I’d been fighting without luck for Ryan and realizing I’m only at the beginning of this trek for Sophie.
Then last July I discovered the Tourette Alliance, a Belfast based group that provides support for families who are dealing with Tourette Syndrome or Tic Disorders. They provided me with information, moral support and a place where someone understood what my family was going through. The Tourette Alliance is also working to spread awareness among the government, health and education departments on what Tourette is and what a massive impact it has on a child and their family – working to make them aware that Tourette is more than tics and that there’s simply not sufficient help or understanding of this disorder.
In August, we attended a two day conference in Belfast put on by the Tourette Alliance. I had mixed emotions about what I’ve learned; on one hand I’m so happy to learn and understand that all these different things that Ryan does (like chewing on the tea towels, smelling everything, or even his meltdowns) are common for those with Tourette. These symptoms and behaviors actually have names! I even learned ideas on how to help him manage and deal with them. I learned that these are things that he can’t help doing, which has left me guilt ridden for all the times I’ve told him to stop doing these things. I even learned that there’s a hereditary component to Tourette, something I wish I’d known long, long ago.
While the Tourette Alliance has been amazing for us, I can’t help but think on how different things would have been if we’d been able to get this information from the medical personnel we’ve dealt with early in my children’s lives.
Early this month I finally received a call from CAMHS. Ryan will have an appointment at the end of the month. It’s taken years and I’m both thrilled and anxious.
I’m filled with questions that I have no answers to; will they do a full assessment? I want to be hopeful but I’m afraid to have those hopes dashed. The one thing I am hopeful about is that my journey with Sophie won’t be as long. It helps now having some knowledge of all these disorders so I know what assessments I want to have done.
To anyone just beginning this journey, please stay strong! Don’t blame yourself…we all make mistakes so don’t let the guilt overwhelm you. Take care of yourself. Enjoy the laughter when it comes and don’t let the dark days bring you down. You are your child’s spokesperson. You can fight this, you can do this, and you’re not alone. You have others who are willing to walk with you, step by step. So, chin up.
“Aggressive symptoms are relatively common in TS and have adverse impacts on family functioning and quality of life. The etiology of such symptoms may reflect a complex interplay among neurobiological, genetic, and environment factors.” (Fits, Tantrums, and Rages in TS and Related Disorders – Cathy L. Budman & Miri Rosen & Sana Shad, 2015)
For more information on Tourette Syndrome and Tic Disorders please contact the Tourette Alliance at TouretteAlliance@gmail.com