Our son was born full-term with no complications, weighing 8.5 lbs. He was very healthy and developed on track during his early months.
One evening, he dropped his head abruptly about 4 times, crying. Then, he burped. Maybe it was just painful gas.
But the next evening, it happened again…and then a third night, around the same time every night. Something didn’t feel right. After some online research, we found Infantile Spasms (IS)–a catastrophic childhood epilepsy: 90% severe developmental disability, 31% fatality rate. But what are the chances he would have that…right?
We called a neurologist the next morning and managed to get a same-day appointment due to a cancellation. The check-up yielded very little, and the doctor was just sending us on our way, telling us that we should not worry too much, when my son went into his first ever seizure cluster.
We were promptly admitted to a hospital. What started as a 30-minute appointment to relieve our greatest fears turned into a week-long hospital stay that confirmed it instead. His EEG showed modified hypsarrhythmia. Our 5 month old baby was diagnosed with Infantile Spasms and our world changed forever.
Once that first seizure occurred, he continued to have more, like clockwork, clusters of them at a time, 30-40 per cluster, 12min per cluster, totaling almost 200 seizures a day. He was sedated for a brain MRI and the results came back with bilateral brain injury suggesting an in utero stroke.
While still in the hospital, we witnessed the regression of developmental skills that came with IS. He became like an infant, and completely lost the ability to hold up his own head. He stopped babbling and became silent, except for his cries. His arm started to fist up, his hamstrings stiff. In that same week, he was also diagnosed with cerebral palsy.
He went on high-dose ACTH (steroids) that stopped the spasms but didn’t eradicate the hypsarrhythmia, so we switched to another medication, Sabril (Vigabatrin), which eventually cleared up his EEG. Several months after his 1st birthday, he had his last seizure and was eventually weaned from Sabril as well.
Even though he had symptomatic Infantile Spasms (symptomatic due to his MRI), which indicates the likelihood to have more seizures and other seizure disorders in the future, we choose to live in the present, grateful for how far we’ve come. We cheer on each inch-stone, celebrate each season’s victories and take it one day at a time. Today, our son is still seizure-free and medication-free. He loves Legos, dinosaurs, music, adaptive skiing, tandem surfing, horseback therapy, and is one of the happiest kids you’ll ever meet.