Tourette Alliance| 6 Donegore Gardens, Belfast, Co. Antrim, Northern Ireland, BT11 9NA info@tourettealliance.org 07850496886

Managing Tourette; The Family’s Response Can Be Critical

By Tanya Sockol

 

Potholes in the Road

Tourette Alliance, Tourette Syndrome, Tourettes, Tics, TS, ADHD, OCD, Sensory, SPD, ODD Auditory Dysfunction, Ireland, Northern Ireland, Republic of Ireland, Belfast, Dublin, Coprolalia, Swearing, twitch, Twitches, eye tics, head tics, neck tics, shoulder tics, psychiatry, neurology, neuropsychiatry, tic disordersThe mother of Thomas, 9, was mortified as he threw himself to the floor of the holiday shop, kicking and screaming. There were bright-colored lights in every nook and cranny, people bustling about and so much noise that it was difficult to hear anyone speak. Other shoppers stopped and stared. Some shook their heads and others made comments under their breaths.

Thomas had been diagnosed with Tourette Syndrome a few months earlier. He’d begun to have tics when he was only a small child, though his family thought of them as curious quirks. As he got older it became clear that they were more than habits. Along with Tourette, Thomas was diagnosed by his NeuroPsych as having OCD and Sensory Processing Disorder; common comorbid conditions. As his tics became more frequent and more obvious, Thomas became angry. He would have outbursts and often wouldn’t take “no” for an answer. Sometimes, Thomas would kick walls or break things in their home. This behavior had become more frequent and intense over the last few months. His family was confused, embarassed and overwhelmed.

They weren’t alone. Studies show that, on average, around 75% of children with Tourette have behavioral issues, including anger, explosive outbursts, aggressive behaviors and rage, often brought on by things which seem completely out of proportion to their response. The more intense the reaction (and the severity and frequency of tics), the more likely the children are to have co-occurring OCD, ADHD and SPD and their tics are usually more severe. In many cases, this behavior was the very reason they visited a physician.

Fourteen-year-old Connor calls these outbursts, or meltdowns, potholes. “If you’re driving down the road and your car falls into a huge pothole, you’re going to damage it and it’s going to be difficult to get back out,” he said. “Potholes are the triggers that cause the meltdown. The good thing is that you can actually see them coming if you know what to look for and instead of driving through them, you can find ways around them. 


He admits though, that this isn’t just about the driver. “My family learning how to help me see what might cause issues was important. We had to work together but eventually we were all able to find ourselves on the right track – one free of potholes. Through trial and error we learned to avoid things that would cause triggers.”



It Takes a Village

Studies have shown that family plays an important role when it comes to Tourette Syndrome. When there is a good understanding of the symptoms, support, a good routine and structure within a family, it can affect not just the behavior of the child with TS, it can affect their tics as well.

Theodore Goldsmith, M.A. author of the clinical dissertation, “Adolescent Tourette Syndrome, Interventions, and Families” said the important role family plays in Tourette cannot be overstated. “I think it’s crucial to understand that Tourette Syndrome impacts all members of the family, and in turn, families impact the severity and frequency of tics.” Since anger, frustration and sadness are natural reactions to the feeling of powerlessness when a loved one has tics, it’s important to remember that the youths themselves are feeling the same emotions.  “This can be a recipe for conflict,” Goldsmith said. “We know there is a biological basis to tics and bad parenting doesn’t cause them, but emotional reactions can exacerbate them. I think the first step for parents is understanding the disorder. ”

Michael, a student in his early 20s who was diagnosed with Tourette as a teenager, explained that it made a huge impact when his family finally accepted that he couldn’t help his tics. “When I was initially diagnosed my dad was visibly upset and in tears,” he said. “He told me he didn’t think I was trying hard enough to stop the tics. My grandmother told me she was concerned I’d never get a job if I didn’t stop what I was doing and my brothers even laughed and joked about me. I know, looking back, that they were trying to ease my anxiety and frustration, but at the time it made me upset and angry.”

After his family received support from a group of other parents, as well as training from Michael’s physicians on his behaviors and what he was experiencing, their response to his behaviors and tics changed. “No one tries to stop my tics anymore and they’re extremely supportive. The anxiety melted away and that has dramatically reduced my symptoms. It’s also helped me accept that the tics are part of me, part of who I am and, honestly, I wouldn’t change them.”

Helen, a mom of two children with Tourette who herself was diagnosed as an adult, understands the diagnosis affects the entire family. “I absolutely agree that when family members do not believe or understand that tics aren’t purposeful and that some actions are a part of Tourette, it increases tics and other symptoms,” she said. “As much as I hate to say it, if therapy doesn’t involve the whole family, it won’t work.

Sympathy vs. Empathy

Because of the genetics of Tourette, there are often several family members in the same household who have TS or who may suffer from one of the comorbid conditions, such as OCD, which can complicate matters.

“Even my dad, who is super amazing, recently told me, “You need to do something about that noise you make’,” explained Megan, an adult with Tourette whose teenage son was diagnosed as a child. “It made me very self-conscious, which only made it worse.” Oddly, this only made her interactions with her son more fraught with conflict. “I tend to be less sympathetic than my husband. I find myself thinking that since I toughed it out, he can too. My husband has to occasionally remind me that my son can’t help it any more than I can.

Franklin, who has Tourette and has two children who were diagnosed when they were young, has seen the same dynamic play out within his own family. “I’ve discovered that my youngest is experiencing things that I never really did, or at least didn’t struggle with as much, and I’m not responding or helping like I would if I had experienced it,” he said. “I find myself thinking a lot about sympathy versus empathy and actively working to be better at trying to understand what they’re going through – even if it’s not what I did. Attending therapy as a family definitely helped reduce the conflict in our home. So much of what we know is from trial and error. I’m hoping, though, that through support and advocacy we can help others avoid the same pitfalls.”  

Goldsmith explained: “Family therapy can help increase communication, strengthen relationships, and promote stability. While it helps for parents to be nonreactive to tics in the moment, it’s also crucial to provide emotional support through open communication and acceptance. Living with Tourette Syndrome is hard, and it can be very meaningful for youths to be able to share that experience without feeling judged.” He also said that those who treat Tourette Syndrome encourage parents to consider their own individual or couples therapy to process their emotions and strengthen their relationships as co-parents.


“We want to promote emotion regulation and stability throughout the family in order to create a supportive and stable environment.”


 

Approaching the Storms

“Before we knew he had Tourette,” said the mother of 12-year-old Leo, “we were always telling him to stop his tics. It just made him more anxious. He thought he was doing something wrong. That would lead to him feeling frustrated. Add in the issues with OCD, the difficulties in changing routine and his really severe sensory issues and it was a recipe for disaster. There was a moment when he actually hit and kicked me at a supermarket checkout and I was so mortified I wasn’t even able to respond. When I did, the way I handled it only made things much worse.”

After years of support, therapy and a growing knowledge of what led to Leo’s meltdowns – and learning to avoid those triggers – his angry outbursts are gone and his tics have become much less severe. Like many others, Leo’s family found a counselor who helped them all work together to be emotionally open and supportive through family therapy sessions, and also encouraged them to attend Parental Management Training (PMT).  

Through helping parents of children with Tourette learn to identify the triggers, understand behaviors and promoting positive reinforcement, PMT has been shown to be incredibly effective, with one study showing a 33% reduction in disruptive behaviors after only a few months. PMT also helps parents understand that they are not to blame. Given the hereditary nature of Tourette and the misunderstanding of many of its symptoms, this is an often internalized concern that can be difficult for many parents to overcome.  

‘Do Something Else’ Therapy

Family-based interventions are important and there are many different types of therapies to help those suffering with Tourette and its cooccurring conditions. Many individuals and families have found life changing results through Habit Reversal Therapy (HRT), Cognitive Behavioral Therapy (CBT) and Comprehensive Behavioral Therapy for Tics (CBIT). These therapies have been found to be extremely effective in the management of symptoms and studies show that they work quite well at reducing tic severity, helping with excoriation disorders (skin picking and hair pulling which are often found occurring in those with TS) and aiding in behaviors related to OCD.

HRT works to find effective ways to shift habits by diagnosing and retaining the old cue and reward, yet changing the routine. CBT is a form of treatment that focuses on examining the relationships between thoughts, feelings and behaviors to help a person change their way of thinking about what causes their symptoms and actively work on problem solving and goal setting in order to manage symptoms. CBIT teaches, as one doctor described it, not a “Stop It” therapy, but rather a “Do Something Else” therapy, training patients to find a different response to stimuli.


A study in the Journal of the American Medical Association in 2010 found that children and adolescents who completed a 10-week course of CBIT showed a decrease in tic severity that was only slightly less than that associated with antipsychotic medications, commonly used to treat Tourette Syndrome.


Yet, through all of this the greatest change in families can be seen when they begin to get support from others and begin to learn to advocate. “As kids get older and more comfortable, it can also be really empowering to allow them to be their own advocates and educate others about their tics,” said Goldsmith.

Advocacy, Awareness and Acceptance

The family of 13-year-old Dean found that once they began to accept his tics and behaviors, so did Dean. “His tics were so severe,” said his mom, “but I also believe that his understanding of it has helped tremendously. As we learned more about Tourette, we taught him more and he began to advocate for himself, not just at school and in public, but at home as well. He began letting us know when he felt a trigger was coming.”

Tourette Alliance, Tourette Syndrome, Tourettes, Tics, TS, ADHD, OCD, Sensory, SPD, ODD Auditory Dysfunction, Ireland, Northern Ireland, Republic of Ireland, Belfast, Dublin, Coprolalia, Swearing, twitch, Twitches, eye tics, head tics, neck tics, shoulder tics, psychiatry, neurology, neuropsychiatry, tic disorders

The family of Maria, 16, had a similar experience. “My brother was diagnosed first at age seven. By the point when I was diagnosed, around six years later, my parents had a great understanding of Tourette. There were definite differences in how severe our tics were. I was trained as a youth advocate and I was surprised to learn that it made it easier to explain to my family members that Tourette is involuntary…telling me to stop or quiet down didn’t help at all. In fact that made it worse.”

 

 

 

One sibling, 24-year-old Beth, who’s two brothers have Tourette, said that growing up her home was always filled with stress. “When you’re a 15 or 16 year old with younger brothers who have Tourette, it just kind of is what it is. The hardest part about it was honestly the way that my parents handled (or rather didn’t handle) the situations. That wasn’t their fault; there just wasn’t a lot of understanding about what was happening.” Things changed when her family began to learn about triggers and how to properly respond to them. “We went from having constant meltdowns to my brothers being fantastic advocates for themselves and others. It’s shocking how much of a change there’s been through education.”

It is also important to not be too quick to blame medications or therapy for a temporary spike in tics as there are often other factors involved. “It requires a great deal of patience for families to cope with Tourette,” Goldsmith explained, “it can take years to find a treatment plan that works. The path to reducing tics is not linear, and there will be periods when they flare up and new tics develop, which can be discouraging. Unfortunately, kids have to live with judgment and stigma from the outside world, but support and understanding within the family can make a huge difference.”

“I think that by the time a child gets a diagnosis, especially when it’s Tourette Syndrome Plus, the family is already behind,” Helen related. “If I could do it over, I would tell myself to get into therapy for the whole family immediately and that you can’t just fix or change your child. The child may be the one with diagnosis, but the whole family is impacted – even if they don’t see it.”

“This is a process,” she said. “It’s not about a quick fix or a miracle cure. It’s about adaptation and management.”

 


Adolescent Tourette Syndrome, interventions, and families: A systemic perspective – Theodore Goldsmith, M.A.


 

*Some of the names have been changed to protect the identity of those who contributed to this post

For more information on Tourette Syndrome, other Tic Disorders & Their Associated Conditions please contact the Tourette Alliance at TouretteAlliance@gmail.com

An Introduction to Comorbid OCD; Intrusive Thoughts

Tanya Sockol

Most of us have an excellent understanding of obsessive compulsive disorder (OCD) when it stands alone; we recognize the frequent hand washing, the placing of items all in a perfect row, the emphasis on evenness and fairness. These indicators aren’t incorrect. Yet when OCD is comorbid, or present at the same time as Tourette, it presents quite differently and in ways most would never expect. The obsessive thinking associated with the disorder can become the more common aspect and, often, the cause of anxiety and depression in individuals with Tourette. These symptoms include something that many with Tourette suffer, yet feel embarrassed or afraid to talk about, “intrusive thoughts”.

Intrusive Thoughts

 Tourette Alliance, Tourette Syndrome, Tourettes, Tics, TS, ADHD, OCD, Sensory, SPD, Auditory Dysfunction, Ireland, Northern Ireland, Republic of Ireland, Belfast, Dublin, Coprolalia, Swearing, twitch, Twitches, eye tics, head tics, neck tics, shoulder tics, psychiatry, neurology, neuropsychiatry, tic disordersIntrusive thoughts or intrusive images are unwanted and sometimes troubling thoughts or visuals which show up in a person’s mind. They frequently contain unpleasant aspects, which can include sexual or violent themes and can be frightening and overwhelming. Because they don’t understand what’s happening or they are afraid of what people will think, children often don’t speak about these thoughts or images, leading to an even greater amount of anxiety. If they do open up, parents have little information on exactly what these are, why they happen or how to help their children cope with them—the parents themselves might be worried or embarrassed about what these mean.


“For me it’s like having a song stuck in my head,” said Stephen*, an adult living with TS. “However, instead of a pleasant song that makes you feel relaxed, it’s something that fills you with dread.”


“Like an image of your own death or seeing someone you love dead or injured,” he continued. “The mental strain I use to try and get rid of the ‘song’ leaves me frustrated and upset. These images or thoughts plays on my darkest fears…on things I feel horrible about and my mind won’t let me escape it.”

Mike, a teenager with Tourette, described his intrusive thoughts with bitter emotion. “These thoughts just take over,” he shared. “The ‘I’m definitely going to die now’ thing just takes hold, or I hear myself think that things would just be easier if I were gone…if I killed myself. I don’t want to die, and I’m not suicidal, but it’s almost like my mind is a different person talking to me. It makes me angry and miserable.”

“I absolutely thought my parents were going to die,” said Evan, a twelve year old with TS. “When I was in second grade I would cry anytime I couldn’t be with my parents. In my head I kept seeing them dead and I thought if I just kept them by me nothing bad would happen. Every morning before school I would have these huge meltdowns in the parking lot and refuse to go in. It was really a bad time. But eventually my parents got a cell phone and the school let me keep it with me. That helped because I knew as long as I could text them when the images would come into my head and as long as they answered everything was okay. It doesn’t happen much anymore, but when it does I still text my mom or dad or I go play on my x-box and that helps.”

Coping Mechanisms

Distraction

Distraction is a theme many use to cope. The technique is surprisingly effective, allowing for the interruption of negative thoughts by engaging in a more positive, absorbing activity.

“Honestly, distraction is the only thing that helps me,” said Catriona, a mom of three who has Tourette. “When I was having intrusive suicidal thoughts, that was the most intense ones that I’ve had, all I could do was watch Scandal for hours and color in my adult coloring book. The suicidal ones can be scary at first and it took me a little while to figure out that they probably didn’t mean I wanted to kill myself.”

For less dangerous intrusive thoughts and images she said she often substitutes an activity for each thought. “I find cleaning and organizing things very centering. Since the intrusive thoughts aren’t useful, I try to replace them by doing something “useful” but which doesn’t involve a lot of complicated thinking. I take control. I decide to interpret the intrusive thoughts as meaning that my anxiety level is very high and I can then do things to address the anxiety.”

Jessamine, a mom and advocate, had a similar approach to helping her children deal with  Tourette Alliance, Tourette Syndrome, Tourettes, Tics, TS, ADHD, OCD, Sensory, SPD, Auditory Dysfunction, Ireland, Northern Ireland, Republic of Ireland, Belfast, Dublin, Coprolalia, Swearing, twitch, Twitches, eye tics, head tics, neck tics, shoulder tics, psychiatry, neurology, neuropsychiatry, tic disordersthe upsetting images and thoughts. “We do this thing where the kids will draw a picture of the horrible thing they are imagining, and then we draw over the picture things that fix it,” she said. “Corks to cover the spikes of a deadly monster, sunglasses to cover Voldemort’s eyes, birthday hats and baby pacifiers on terrorists and zombies, bandaids over cuts from knives or doctors, changing the look on the face of the person in the drawing, wings on someone falling, boats where they land after jumping off a waterfall. We even change it from them dying to them being helped by someone they love or adding wings or springs on their feet to jump away from the bad guy or situation!”

“I call it “adding to the intrusive thought”,” said Jessamine. “I say the intrusive thought is no more real than the stuff we add to it to nullify the fear. We practice it in our mind too when the thoughts come up at random. For the awful repeat ones, the picture (which is really art therapy) truly helps.” After the children have completed the drawing there’s one final step, “when all is said and done, we rip the picture up and throw it in the garbage to represent how real it isn’t…that we can literally just throw it away.”

In the days before he understood his symptoms, Stephen found himself hiding in his room.

Change of Environment

“I’m trying to change that habit,” he said. “I go outside now and find that being in nature is quite helpful.”

Several others we spoke with echoed this sentiment. “Feeling the sun on my arms, walking in the woods or being at the beach remind me that nothing bad is happening in that moment and help me keep focus,” said one.

Another added in physical activity to keep his mind clear, “I find that exercise helps, especially if I do an activity outside where I can be in brightly lit, natural surroundings.” He jogs through a local park in the mornings as a way of staying on track mentally.  Mike said that while exercise and being outdoors helps him, his biggest help is watching videos or playing video games. “It doesn’t take any thought for me to do these things and I can force myself to clear my mind and try to relax.”

Meditation

 Tourette Alliance, Tourette Syndrome, Tourettes, Tics, TS, ADHD, OCD, Sensory, SPD, Auditory Dysfunction, Ireland, Northern Ireland, Republic of Ireland, Belfast, Dublin, Coprolalia, Swearing, twitch, Twitches, eye tics, head tics, neck tics, shoulder tics, psychiatry, neurology, neuropsychiatry, tic disordersMeditation was also mentioned by many who say they find the daily refocusing of their mind helpful. Yet, for some, distraction or other coping mechanisms simply don’t work. Instead they find that other therapies such as Tapping, Eye Movement Desensitization and Reprocessing (EMDR) or Cognitive Behavioral Therapy (CBT) work well. Still others find that medication is their best option. Several physicians we spoke to mentioned Selective serotonin reuptake inhibitors (SSRIs) as working effectively with these types of OCD symptoms.

 

Importance of Education

Regardless of what specific activity we heard about, the one sentiment that was mentioned repeatedly was that learning about their condition was imperative.  According to nearly everyone interviewed, finding out they weren’t alone helped reduce their anxiety and fear;  knowing that the thoughts and images were part of OCD gave them hope that there were ways to deal with them. Catriona said she reminds herself of this as often as possible.

“Intrusive thoughts are pretty much never about what they seem like they’re about. They’re just a symptom of something else – and they’re just tapes playing over and over. Something I said to my kids the other day – you are not your anxiety. And anxiety doesn’t get to make the decisions for you.”

 

*Some of the names have been changed to protect the identity of those who contributed to this post

One Family’s Journey to Finding Hope & Support For Tourette Syndrome

– Elain Smith

Beginnings

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.

A Breakthrough

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.

Help Arrives 

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.

Hope

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