By Dr. Heather Mastrianno
Something Might be Wrong…
Our breaking point: Monday, January 3rd, 2022. Olivia was home from school, so my husband and I had to split shifts. During the morning, I was home with her. Olivia’s tics transitioned to her full mouth opening and closing, over and over and now her head started twisting too. I tried not to cry when I saw her. I kept thinking, “How is this happening?! Where did this come from?! Is this permanent?!? Is she going to get made fun of?! What is this going to do to her self-esteem!?” I tried to call my husband to warn him it had gotten even worse, but before I could tell him anything other than “it’s not good,” he quickly became worried as he was noticing it too.
I understood. I wanted it to disappear too. I wanted to run from it, to not see it, to hope it was just a dream. The tics at this point were obvious and alarming in frequency. They were occurring about every 30 seconds to 1 minute while she was relaxing or not participating in active talking or movement. Even when she talked, when she paused, she would display the tics again.
As soon as I got to work, I got a call from my husband. He was crying. I had never heard him so distraught. He said, “Heather, it’s bad. We need to start neurofeedback now.” I checked the schedule, found an opening, and told him to bring her to the clinic in an hour. He did and so our Neurofeedback journey began.
As this was happening, I felt uniquely privileged because I had tools that most others did not: a background in and understanding of neurofeedback. I knew it would be the only answer for her because I had seen it work before. I needed to hold onto the belief and knowledge that this could help my child too. I also knew that I needed to record all of this. This was important not just for me to track my daughter’s progress, but for other mamas and daddies, daughters and sons that didn’t know about this treatment. This was bigger than me and I felt compelled to share our story with others.
Clinical Presentation
Hypokinetic movement disorders refer to akinesia (lack of movement, hypokinesia (reduced movement), and bradykinesia (slow movement) (Western University, n.d.).
Hyperkinetic disorders are defined by jerky excessive movements that might be seen in isolation or in combination with non-jerky movements (Abdo et al., 2010, p. 31).
Movement disorders. Western University. (n.d.). Retrieved from https://www.uwo.ca/fhs/csd/smdl/about_smds/movement_disorders/index.html#:~:text=Hyperkinetic%20movement%20disorders%20refer%20to,slow%20movement)%2C%20and%20rigidity.
Meet Olivia
This is a picture of Olivia in December 2021. She just turned 6 years old and started Kindergarten.
This is a picture of Olivia and her family.
Definition and Symptoms of Dystonia
This is what Olivia was experiencing:
This movement disorder is characterized by the involuntary abnormal co-contraction of antagonistic muscles which sometimes cause sustained abnormal postures or twisting and repetitive movements (Abdo et al., 2010, p. 32). Dystonia involves dysfunction within the basal ganglia, cortex, cerebellum, and their inter-connections as part of the sensorimotor network (McClelland et al., 2021, p. 1).
Abdo, W. F., Van De Warrenburg, B. P., Burn, D. J., Quinn, N. P., & Bloem, B. R. (2010). The clinical approach to movement disorders. Nature Reviews Neurology, 6(1), 29-37. McClelland, V. M., Fischer, P., Foddai, E., Dall’Orso, S., Burdet, E., Brown, P., & Lin, J. P. (2021). EEG measures of sensorimotor processing and their development are abnormal in children with isolated dystonia and dystonic cerebral palsy. NeuroImage: Clinical, 30, 102569.
My first sight of Olivia’s tics:
In December 2021, Olivia began to yawn in the evenings a lot, which initially, I didn’t really think much about. One evening she got frustrated with her yawning and told me “mom I want to go to bed right now so that I can stop yawning!” I laughed, kissed her goodnight and told her that yawning was just a sign that she was tired and that she did need to go to bed, but she didn’t need to be so upset about it. At the time I thought her comments were silly and odd. Now that I look back, I realize that was the beginning of the tics.
What is a Movement Disorder?
Movement disorders refers to a group of nervous system (neurological) conditions that cause either increased movements or reduced or slow movements. These movements may be voluntary or involuntary (Mayo Clinic, n.d.).
Mayo Foundation for Medical Education and Research. (2022). Movement disorders. Mayo Clinic. Retrieved September 9, 2022, from https://www.mayoclinic.org/diseases-c\nditions/movement-disorders/symptoms-causes/syc-20363893
Clinical Presentation
Hypokinetic movement disorders refer to akinesia (lack of movement, hypokinesia (reduced movement), and bradykinesia (slow movement) (Western University, n.d.).
Hyperkinetic disorders are defined by jerky excessive movements that might be seen in isolation or in combination with non-jerky movements (Abdo et al., 2010, p. 31).
