It was mother’s day 2017. I had quickly ducked out to the shops to get a few groceries before heading out for Mother’s Day lunch. My daughter called me when I was at the shops to tell me something was wrong with my son;
Renee: ‘Mum there is something wrong with Buran!"
Me: ‘What do you mean? What’s wrong with him? Is he okay?"
Renee: ‘Well it’s like he’s have a spasm or something’
Me: ‘What does it look like?’
Renee: ‘His neck keeps clenching up and then it’s like it travels down his arm and into his hand’
I rushed home immediately thinking the absolute worst. Not to alarm him I just sat and watched him and spoke to him like normal and then sure enough there it was. His neck would clench, causing his head to tilt to the side, his eyes roll back and then his arm and fingers would spasm causing them to clench tightly together. What the hell is going on? He was still talking okay but clearly there was something not right. It was something that he couldn’t control either. They were happening quite regularly and looked very intense. Almost like a severe cramp that results in your muscle seizing and contracting so hard that you can’t move.
I got straight onto the ‘Health Line’ and spoke with a nurse and described the symptoms. She advised that it might be best to take him to the emergency department just to have him checked over in case there was something serious going on.
AH PANIC!! Panic struck me immediately. Lump in my throat I remained calm as I explained to my kids that we needed to go to the hospital just to have a Doctor check over Buran and find out why he was having these spasms.
The trip to the hospital I had so many things going through my head. Just filled with worry and that there was something seriously wrong. I knew from my education in sports science that these messages causing his spasms are coming from his brain. So what is going on with his brain that this is happening. Is it epilepsy? Worst case is it something on his brain? Is it a TUMOR?
As we sat and waited at the children’s emergency my worries grew as I watched him and these spasms over taking his little body. So hard for me to fight back the tears and the lump in the throat but I didn’t want to upset my son or my other kids. I needed to be strong and attend to it like everything was going to be okay.
The Doctors assessed him and on their initial assessment he passed all the cognitive tests which led them to believe it most like a TIC! A TIC ! What’s a TIC?? I had no idea. Never heard of it. A TIC is a sudden, repetitive, nonrhythmic motor movement or vocalisation involving discrete muscle groups.
However, to be sure in their diagnosis they would have to sedate him in order to see if these TIC’s were present whilst he was sleeping and they wanted to keep him in overnight to monitor him. So they injected him with a drug to put him to sleep. There he lay, sleeping, yet my mind was filled with worry. My daughter was so distraught, crying by his side and not wanting to leave him. I fought so hard to fight back my own tears. Since the day he was born Renee fell instantly in love with her brother. They formed such a close bond and were inseperable. Buran absolutely loves his big sister. I didn’t want her to see me cry, I had to be strong. His Dad said he wanted to stay with him overnight and as much as I wanted to stay as well I had to make the decision to go home as I had my two daughters and we all couldn’t stay there all night.
That night I went home and cried hysterically. I felt like such a bad mum. Have I caused this? How can I make him better? What is wrong with my son? Why couldn’t it be me with this and not him? What’s making him TIC? He’s always been such a happy, healthy little boy. I googled TIC’s and tried to read as much as I could that night to get an understanding of what a TIC was and what’s going on in my son’s brain.
The next morning early, I messaged his Dad and he said he slept well and there were no seizures or spasms during his sleep which was good news. As soon as I dropped my other two kids at school I went back to the hospital to speak with the Doctors and to bring Buran home. The Pediatrician came and saw us and explained that they weren’t concerned that there was something major going on with his brain that would warrant a brain scan and that they have diagnosed it as a transient TIC at this stage and that they would like to see him in a follow up appointment in 8 weeks. He said that most likely it was a transient TIC, which means it might only last a year and most likely it’ll come and go within that time and the TIC’s may change from time to time. Motor TIC’s combined with Vocal TIC’s that last more than 12months are then classified as TOURETTES Syndrome. My understanding of people that had Tourettes was that they would randomly yell out offensive things. How wrong I was. The Doctor explained that vocal TIC is not just screaming out offensive things that people may exhibit strange noises and sounds. He then went on to explain that there is no real explanation as to what causes TICS’s however most likely it is related to stress. Boys are more likely to exhibit TICS and the more stressed or anxious a person is then the more evident TIC’s become. STRESS?? Why is my son stressed?
So I took him home and began the process of how I can help him and identifying what was causing his stress.