Guidance & Care for Infants with Epilepsy

This week, I spent another few days in the hospital with Owen. He had been having seizures reminiscent of the infantile spasms, and nothing terrifies me more than that. On top of this, we knew from a recent EEG that his brain shows high seizure potential with a very low threshold. Even though he has been taking his Keppra, we’ve noticed an increase in his staring spells and other suspicious activities. Thankfully, there has been no prolonged seizure activity for […]

“Even if they outgrow the spasms, they remain at a much higher risk of developing another seizure type throughout their life.” This statement is all too familiar to every parent of a child with infantile spasms. The chilling truth that keeps us up at night. This reality feels too open-ended, leaving us with many questions and even more concerns. What other types of seizures are we talking about? When are they truly out of the woods?  How will I know

Buckle up, this one is raw. Picture this: you’re in the hospital with your baby, scared and confused. Doctors and nurses are asking questions, running tests. Half of the questions seem to be about you; your pregnancy, your delivery, your lifestyle. You’re left wondering if something you did caused this. If you missed something. If there’s something in you that passed to your baby like a curse. Many parents wrestle with this guilt. The answer is usually no. Nature and

The inspiration behind Tykes with Spikes is my son, Owen. Born in April 2024, Owen was a healthy baby—aside from a few minor findings like an enlarged kidney and a single palmar crease, which genetics deemed non-issues. We were told to follow up only if developmental concerns arose. Owen thrived in his first months—he loved music, food, swimming, and stroller runs. But around nine months old, subtle and sudden jerking movements began, mostly upon waking. They seemed mild at first,