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At 15 months, our son Evan was a typical child. He was happy, and seemed to be developing just like his twin brother, Henry. Suddenly, that all changed. Evan began to lose the words and sounds he had learned, and began moving his mouth open and shut with nothing coming out.

Over the next year and half, Evan was diagnosed with verbal apraxia, hypotonia, sensory integration dysfunction, and fine motor delays. He made tremendous progress with intensive speech and occupational therapy, but something was still not right—Evan had trouble with social interactions, limited interest in toys, poor eye contact, obsessive-compulsive tendencies, and didn’t appear to understand non-verbal gestures. He was diagnosed with PDD (pervasive Evan and familydevelopmental disorder), a developmental delay on the autism spectrum. We were devastated, but held out hope that his excellent cognitive skills and early intervention would allow him to live a fairly normal life.

With intensive therapy, Evan made progress. At four, we enrolled him in a typical pre-school with Henry. However, one day before school, Evan vomited and hunched over in his chair at the kitchen table. I assumed he had a stomach virus, but soon realized something else was going on. He was pale, unable to talk, and just seemed to stare right through me. After fifteen minutes, he seemed fine, so I brushed it off, hoping it was an isolated incident.

One week later, the twins were playing and laughing together when they abruptly lapsed into silence. I found Henry watching TV, and Evan asleep on the couch. He was breathing but unresponsive. The paramedics suspected he had had a seizure and was ‘post-ictal’ (a state of altered consciousness after a seizure). When an EEG confirmed this was true, the doctor put him on medication immediately.

I admit we were in denial. How could he have epilepsy when none of us had ever witnessed a seizure? We remained optimistic—he had grappled with other diagnoses before and always managed to exceed expectations.

However, when we found Evan atop our seven-foot high swing-set in the midst of a 45-minute seizure, the reality of his diagnosis set in. Evan was lying on the swing-set platform, all extremities shaking. Seeing that one seizure taught us to hate yet respect the power of this disorder.

We began a long, painful process of finding a medication to control Evan’s seizures. With the first two drugs, he continued to have frequent seizures, putting his brain and life at constant risk. The medications had terrible side effects—he slept all the time, bruised easily, lost self-confidence, and most importantly, lost much of the progress he had made in speech and occupational therapy. His pre-school was now uncomfortable having him in the classroom, and babysitters and family members were nervous watching him alone.

After months, we finally found a medication that worked. Side effects were mild, and hope crept back into our lives. He began to make progress in therapy again. After living with the uncertainty, fear, and pain of Evan’s seizures, we felt liberated and began to recapture what our lives were like before seizures.

Unfortunately, this “honeymoon” was short-lived. Five months later, we started to notice odd behaviors—Evan would suddenly stop short, become very pale and unable to talk, and at times move his mouth in an odd way. These incidents became more frequent, each lasting longer than the one before. When doctors diagnosed “atypical absence seizures,” we also learned that Evan’s brain was seizing during much of his sleep, contributing to the deterioration we were witnessing.

New medications made Evan agitated, angry, and emotionally unstable. He made repetitive noises and movements. He became violent with his siblings, parents, and therapists. We had to take him out of school and stop therapy.

Worst of all, his seizures continued. Suffering his worst seizure ever, Evan stopped breathing and turned blue. Afterwards, his seizures began to come in clusters, and we dramatically changed medications in a desperate attempt to stop the seizures. Some days he was lucid in between the seizures, but there were often days he was barely conscious. At one point, his EEG showed over 50 absence seizures every hour.

Presently, after three months in and out of the hospital, we have seizure control again. While Evan’s cognitive functions, miraculously, have remained intact, we continue to see a lot of emotional and psychological regression. The seizure control comes at a cost—he sleeps for hours every afternoon and twelve hours at night, causing him to miss out on many activities typical for a boy his age. We are aware this may be another short-lived “honeymoon” from seizures and we are running out of options.

We continually struggle to understand how all of Evan’s issues are related. Are his seizures the result of an autistic brain? Or is Evan’s autism spectrum disorder caused by his seizure disorder? We are desperate to find the correct balance where we can treat both the seizures and the symptoms of autism.

Often the treatments for epilepsy and autism are incompatible. Many of the interventions to treat autism spectrum disorders, such as diets and nutritional supplements, are not safe for Evan and others with epilepsy. Furthermore, Evan’s seizure medications continue to hinder his learning and progress. Evan is now six years old. Whether or not Evan is lucky enough to outgrow his seizures, we know the impact they have already had on his development, and will always wonder what could have been.

CURE epilepsy

Stacey Pigott

 

 

CURE CURE is a non-profit organization founded by mothers of children with epilepsy who joined forces to spearhead the search for a cure.

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