Simple New App Manages the Care of Complex Disorders
The diagnosis of autism and all neurodevelopmental-related conditions are based on subjective measures. And since these patients often share overlapping symptoms, clinicians and researchers agree many are often misdiagnosed.
Parents of autism spectrum disorder (ASD) and related conditions are especially impacted by these challenges given the extensive overlap of medical conditions and the time factor in providing the proper treatments early for maximum impact.
At the age of six, my son was diagnosed with a partially epileptic seizure disorder; this meant that he had seizures, but was fully alert for the duration of the episode and could remember them. Then, he was diagnosed with Tourette syndrome, where the focus on his movement and tics resulted in an inability to focus on anything else. He was then diagnosed with attention disorder, anxiety and sleeping problems. Like many patients with complex brain disorders, including those with autism, my son had several other medical conditions such as severe food allergies and gastrointestinal (GI) disorders which were all being treated as independent conditions.
Throughout the process, we went from clinic to clinic, meeting with countless physicians and therapists. Between managing my son’s different symptoms and tracking all the prescribed medications and treatments, I became overwhelmed and discouraged. It was expensive, time-consuming and at the end of each appointment, I’d still walk away feeling lost and alone.
With no collaboration of care, my son was not being treated in a holistic manner. I did not know what was a symptom of his conditions and what was a side effect of a medication. I was trying to coordinate his care across the different clinics and his school. If his team of physicians was aware of the volatilities and chaos, they could have intervened appropriately to distinguish between new disease symptoms and those that were just side effects or interactions across medications.
Time to take action
With a background in engineering and computer science, I knew there was an opportunity to create a more hands-on approach to address the challenges I experienced with the care provided for my son. I decided to take action and bring a new approach to understanding patients like him.
I packed up my belongings and moved to the San Francisco Bay Area where I recruited a team of scientists to create Trayt, a data analytics company with a platform for patients with neurodevelopmental and brain disorders and their caretakers to accurately track behavioral and non-behavioral symptoms through a comprehensive and comorbid assessment that captures, measures and analyzes the overlap of key symptoms and their treatments. The data is then analyzed and presented in a dashboard with progress reports and personalized, actionable insights for families and the clinicians.
Triggers and symptoms
Patients and their families need to feel empowered in their healthcare journey. The medical system looks at symptoms totally independent of one another, so the ability for us as parents to look at all of the symptoms and treatments, and understand progress in the context of a complete view allows us to each create a better system of care for our children.
The technology also enables physicians and clinicians treating our children to see what environmental factors or drug interactions trigger a specific symptom or side effect as opposed to constantly treating each symptom independently. It’s a 360-degree view of our children and a dynamic solution for all involved, and it allows us to work together as a team.
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The benefits of technology
My son is now 14 years old and has outgrown the seizures and has been weaned off of the medication. He has downloaded and used Trayt himself. We track and monitor his symptoms and medications simultaneously.
It has been interesting for me to see firsthand the impact of him inputting his own personal perspectives and findings and being able to see his growth over time. Plus, we have not had to modify his medications 15 times like we used to before. As a CEO, I also get to understand how the app works with patients to directly collect information.
After just three months, my son has experienced incredible progress, and I feel in much more control of his care. We have been able to control the impact of one specific medication on his sleep and anxiety levels, which also positively influenced his academic performance. He’s also improved at expressing himself and managing his triggers of anxiety to stay on task and to avoid the panic attacks that once affected his ability to function.
My hope was to develop an app for other parents of children with similar complex and multi-system brain-based disorders, so they could take control and monitor symptoms to understand the effectiveness of all treatments. Advances in technology and data analytics today have provided us with the opportunity to play an active role in collecting data that will not only support the medical community but thousands of patients and families as well. Join our community and embark on a journey of your own!
This article was featured in Issue 84 – The Journey to Good Health and Well-Being