We are excited to share the first in our new series of user profiles. And, what better way to start than by sharing Reza’s story, the son of our founder and CEO Malekeh. Malekeh built Trayt after experiencing the struggles of caring for Reza when he was diagnosed with a seizure disorder.
In 2010, Reza woke up in the middle of the night to find his teeth chattering uncontrollably. Right away, Malekeh knew Reza was experiencing a seizure, and after EEGs, MRIs and various neurological tests, Reza was diagnosed with Benign Rolandic Epilepsy, a form of seizure that typically stops by age 15. Within months of experiencing his first seizure, Reza was confronted with a rapid and confusing onset of new conditions such as tics, ADD and severe food allergies.
While the overlap of conditions like ADD and tic disorders are common and well-documented, the overlap of conditions like seizures, tics and food allergies are not, and this gap in knowledge showed as Reza was treated. Nobody knew how to treat Reza holistically, nor did they think to; Reza’s doctor insisted that his numerous overlapping symptoms were unrelated and needed to be treated independently. Feeling alone and completely out of touch with Reza’s doctors, Malekeh sought to understand her son’s symptoms and how best to care for them. She started this journey with research – she read through diagnostic manuals, research papers and patient posts. She also spoke to other parents like her to find out what their experiences had been. To her surprise, she found out that most people were experiencing something similar. She was convinced that the overlapping symptoms were not unrelated there had to be a connection or even a pattern somewhere. In response to this issue, she founded Trayt with Reza and other families like her in mind, to create a way to holistically track and treat each child’s neurodevelopmental and other neurological conditions.
In the years following the original diagnosis, Reza’s seizures stopped, but he was confronted with new diagnoses that arose from a plethora of symptoms, most prominent of which were his tics. While tics were not his only symptom, Reza feels they were the most relevant. Simply put, tics are involuntary body movements or sounds that manifest in many ways from simple to complex, motor to vocal, transient to chronic. Common tics can include blinking, neck jerking and coughing. Reza’s tics are the result of Tourette syndrome and manifests in the form of blinking, nostril flaring and even coughing and clearing his throat to the point of tasting blood.
It’s important to note that a chronic tic is not automatically synonymous with a child having Tourette syndrome, like many people might assume. In reality, Tourette syndrome is only one of four disorders characterized by motor and vocal tics which develop in childhood and last a year or longer. While most children with tic disorders will see symptoms subside as they enter adolescence, Tourette syndrome behaves differently. According to the National institute of Neurological Disorders and Stroke, most people with Tourette syndrome “experience peak tic severity before the mid-teen years with improvement for the majority of patients in the late teen years and early adulthood.” At 14 years old, Reza was in the thick of it.
While tics associated with Tourette syndrome typically become less frequent as a child enters adulthood, it can be difficult to predict how much a child’s tics will improve over the course of time so doctors, parents and children can be forced to play the waiting game. However, time has familiarized Reza with patterns in the onset of his tics and what can worsen them at a given time on a given day. Issues like poor sleep and anxiety exacerbate his tics, both of which naturally worsen during the school year. Whether it be a looming final exam or just a busy week, stress can act as a trigger for Reza’s tics to worsen in severity and frequency. And on top of this, Reza is at a sensitive age and is often faced with cruelty from his peers. At times, the social impact of Reza’s tics is more distressing than the tics themselves, a topic that we cover in one of our next blogs.
Kids like Reza typically experience tics in conjunction with other health conditions such as ADHD, OCD and anxiety — it’s rare to see tics exist without companions. Upon hearing this, the assumption may be that doctors treat tics and other issues simultaneously, rather than as mutually exclusive issues. But talking with Reza uncovered a different method of treatment. While every doctor is different, Reza’s doctors all tend to treat his symptoms one at a time, independent of each other.
To give credence to this method of treatment, the Child Neurology Foundation asserts that “most co-morbidity, with the possible exception of obsessive compulsive disorder, is likely to be independent of the tic etiology.” While this perhaps explains why Reza’s doctors treated his symptoms separately, it’s worth noting that just because tic disorders and comorbid conditions aren’t born from each other, doesn’t mean they don’t play off each other.
Today, Reza sees three doctors outside of his general pediatrician: a psychiatrist, a therapist and a neurologist. His doctors approach his symptoms one at a time through trial and error, something that Reza says often feels like a shot in the dark. At times, trying so many different therapies can be frustrating, especially when they don't work. Reza has had his fair share of treatment flops, such as a proposed method of reducing his tics by starting a new movement when a tic occurs, like tapping his foot when he notices a blinking tic. He tried this method for two or three months, but nothing changed. Further proving that treating individual symptoms independently is not effective: his therapist indicated that his mood disorder, a common comorbidity in Tourette syndrome, was interfering with the tic treatment. Although it has produced limited progress, Reza still feels that trial and error is the ideal approach of finding useful treatments. In Reza’s many conversations with his doctors on new ideas and options, he maintains hope that there is a solution somewhere. Today, Reza manages his own medications and tracks his own symptoms on the Trayt app. In order to help Reza and other kids like him, he shares his feedback and findings to help us refine the product.
Trayt is built on the founding principle that in order to improve outcomes, healthcare must take a holistic approach to patient care; we believe symptoms do not act independently and should not be treated as such. With this in mind, perhaps a “roundabout” approach could prove to be helpful, such as turning the focus to Reza’s anxiety and sleep in an effort to mitigate his tics. While it might not stop Reza’s tics completely, there’s a good chance it could lessen the frequency of them...and this is the approach that we are pursuing at Trayt.
The Trayt team is rallied behind Reza as he continues in his health journey to find a treatment that feels like a bullseye, after so many shots in the dark.