Nothing can prepare a first-time mom when she discovers her son is not only on the autism spectrum but also epileptic. One mom shares her family’s story.
Autism is a journey I never expected as a first-time mother. I always pictured being one of those mothers rushing to all the sporting events he was involved in.
June 7th, 2017, is a day I will always remember. It’s the day we received my son’s autism diagnosis. Hearing the psychologist tell me: “Your son is showing signs of severe classic autism”, I thought, “How is this possible?” My sweet two-year-old boy at the time was in the corner just spinning the wheels of a car. He had no idea his father and I were heartbroken.
My husband and I weren’t heartbroken by the diagnosis itself but the challenges that come with the autism diagnosis. The challenges of finding the best doctors. The best therapies to provide the best quality of care for our son. The worries of other comorbidities that can come with the autism diagnosis.
Comorbidities associated with autism
Comorbidities frequently associated with autism are epilepsy, sleep disturbances, anxiety, ADHD, gastrointestinal disorders, feeding/eating challenges, obesity, depression, and bipolar disorder. These issues can last throughout life, but may also appear or diminish at different developmental stages. Diagnosis of comorbidities can be challenging because many people with ASD have difficulty recognizing and communicating their symptoms.
Symptoms of epilepsy
When you think of seizures you tend to think of shaking or convulsing on the ground. That is not always the case. Seizures can consist of staring spells, confusion, sudden sleepiness, muscle stiffness, etc.
Our son started seeing a neurologist at the young age of seven months. One day, he was in his bassinet and began stiffening up and seemed to lose control of his arm movement. This behavior was a huge red flag for me. I contacted Kash’s pediatrician and she referred us to a neurologist. Thankfully, we were referred to one of the top pediatric neurologists in Indiana.
Discovering my son has epilepsy
Walking into the office had me on the edge. I was scared. What is wrong with my son? Will I find out today what is going on? My son had no idea what was going on. He was so fascinated with the fish tank in the waiting room. He was pointing and touching the fish tank and just smiling. At that time, his little giggles made me feel somewhat at ease. I was so focused on watching my son’s reaction to the fish, I did not hear them repeating Kash’s name to go back to the room.
There I was, walking down the long hallway to the room the medical assistant was putting us in. Waiting was not my forte. It made me feel even more anxious. I kept thinking the worst. Moments later, the neurologist walks in. She was so welcoming and comforting. She listened to every concern I had. She never doubted my concerns. I remember her saying, ”I’ll be ordering a 24-hour EEG.” I asked how long it would take to be scheduled. She replied, ”Give me one minute.” She left the room. Five minutes later she asks: “Can you do the 24-hour EEG today?” I was shocked. I immediately said: “Yes!”
My husband and I did not know what to expect when it came to a 24-hour EEG. Watching them attach all those probes and wires to our son’s head was overwhelming. It is something first-time parents never want to experience.
His 24-hour EEG came back normal. We felt lost. We knew something was going on but we weren’t sure what it could be. At that time he was diagnosed with abnormal muscle movement.
After months and months of tests, Kash was diagnosed with epilepsy in November 2018, at the age of three. Seizure medicine was introduced at that time to help control his seizures. It took a while to finally find a dosage to help him. They ended up adding a second seizure medication to help control them.
Experiencing unpredictable seizures may be an indication of epilepsy. This common neurological disorder may be diagnosed if the individual has at least two unprovoked seizures. The qualifier being—“unprovoked”—meaning that the seizure is not caused by a known event like a head injury, medication reaction, or high fever.
Autism plus epilepsy—a double whammy
Receiving the epilepsy diagnosis felt like reliving our son’s autism diagnosis. Our boy already deals with many challenges that come with autism; adding epilepsy makes it more difficult. It is hard being a first-time parent, navigating a world that is so foreign to me. I had two major diagnoses that I’ve had to research, to ensure my son is getting the best quality of care. I am his mother, so this means I am his biggest advocate.
This journey has been a whirlwind of emotions. I have had to navigate a path that works best for my son. It has not been an easy journey, but I will never give up on my son.
This article was featured in Issue 120 – Epilepsy: High Risk for ADS Kids