I was this kid.. but no one recognized they were seizures for a very long time. I look at her and think about how hard it would be for a little kid to have to deal with these without the help of an adult.. and that’s truly the only reason I’m sharing this right now.
you might be thinking, why are you nearly yelling her name if she can’t hear you? Trust me, I don’t like the sound either but.. we have to take video for her neurologist and PROVE that she’s unresponsive and not just daydreaming even with an established diagnosis. We have to prove the frequency of her seizures..
(this is very much the opposite of my natural habit but if it’s the only way they can truly acknowledge a seizure for what it is, we have to try to make sure they know she’s not just daydreaming — there’s also a lot of fear in my voice)
Imagine this being your reality as a child, except you don’t have an adult who can help find you accommodations or care? Halston just had a very busy day of OT and PT. Her grandparents are here and things are hectic. Her brain was simply bombarded with too much stimuli. The inhibitory signals in her brain that calms electrical activity, doesn’t always work on its own.
We have to keep her brain very quiet and calm. We have to have set routines. We have to stay predictable and kind — almost like we do for the dogs we share and love.
But what if a child grew up like me.. having constant seizures among the chaos and not having anyone to rely on. Getting blamed for constant ‘daydreaming-like behaviors’ that makes you feel irritable and exhausted? It’s not my parents fault for not knowing what seizures can look like but..
..Knowing the signs is so important.
Living with a child who experiences non-convulsive seizures requires a deep understanding of how these seizures silently impact behavior and daily life. Unlike convulsive seizures, these subtle episodes—often mistaken for daydreaming or inattentiveness—can go unnoticed for years, leading to misunderstandings and emotional strain both for the child and their caregivers. From personal experience, one of the biggest challenges is proving the episodes are seizures to healthcare professionals. Often, parents and educators may dismiss these behaviors simply because they lack the dramatic physical signs of a convulsive event. Recording videos during a seizure episode can provide compelling evidence for neurologists to make an accurate diagnosis and adjust treatment plans accordingly. The brain’s need for calm and stability cannot be overstated. Children with these types of seizures benefit greatly from predictable routines and environments with minimal sensory overload. Activities such as occupational therapy (OT) and physical therapy (PT) can sometimes overstimulate the brain, triggering seizures if not managed carefully. This sensitivity highlights why a steady, calm approach—much like caring for a beloved pet—helps to soothe the brain’s electrical activity. Recognizing warning signs early is critical. Caregivers should watch for frequent staring spells, subtle twitching, sudden irritability, or withdrawal, which might be mistaken for boredom or behavioral issues. Understanding these signs can prevent years of misdiagnosis and ensure children receive the right accommodations in school and at home. Support networks, including family members like grandparents and close friends, play an essential role, providing both assistance and emotional stability. However, it’s equally important to raise awareness about the invisible nature of these disabilities to foster empathy and proper support from the community. Ultimately, the goal is to let children with non-convulsive seizures grow up feeling understood and supported, not blamed or isolated. Sharing stories and experiences helps break the silence around this invisible disability, encouraging others to learn the signs and advocate for timely interventions that improve quality of life.
Thankyou for sharing this and bringing awareness of it🥰🥰