My daughter, May, was born with a severe brain injury. She had seizures every day, from birth. She has taken, at various points, anti-seizure medications including Phenobarbital, vitamin B6 (Pyridoxine), Pyridoxial Phosphate, Topiramate, Sodium Valporate, Lamotrigine and Clobzam. The last four she is still on every day, twice a day. Even with those drugs, May still has seizures at least once or twice a day. But, when she was a baby, they were as frequent as three times every five minutes. That is 864 every day. Did I just write that? May had over 800 seizures a day?

While you mull over those numbers, consider this: those were only the ones we saw. Some seizures don’t manifest themselves physically. It is a horrible thing to say, but May’s seizures were so frequent when she was a baby and toddler I’d discuss them as casually as the weather.

People would stop to ask if she was shaking from cold or fear, and I’d respond, “Oh, no need to worry, it’s only a seizure.” They looked at me like I was insane. Most asked if they should call for medical assistance. “No, it’s fine,” I’d say. It’s a wonder no one called Social Services on us.

864 seizures a day.

And yet, we never experienced any of the torment other children and their parents do: unconsciousness, urgent administering of emergency medicine, ambulances and hospital stays. At first they manifested themselves in a twitching of her arms and facial muscles – usually she’d continue on as if they’d never happened. If she was laughing when she started, she giggled through it. The doctors didn’t think the seizures would damage her brain any further.

But, the seizures did interrupt activity and so we were told they could hurt her long-term development. So, how did we get from 864 seizures a day to 1 or 2?

In short: medication.

The long story:

Over a year of trialing different drugs, in different doses and combinations; a very slow process, made slower by the agonizing wait, sometimes weeks, until a drug starts to take effect. Then, an even longer wait as the drugs slowly built up in her system to see if they really worked to remove the seizures entirely. May will never be off medication. We will have to adjust the doses, at a minimum, until she is an adult since she will “grow” out of the ones she is on as she gets bigger.

Initially, the medications reduced her seizures to 4 or 5 an hour. That felt like a real triumph. (Still, do the calculation: 4/5 seizures x 24 hours is 100+ a day) Today, May’s seizures far less frequent but can be more distressing for her. Her arms fling out to her sides, they get stiff and tremulous along with her legs.Sometimes her eyes widen in fear, but sometimes she giggles. We hold her tightly, sing to her and wait for them to pass. Most of the time, we don’t think twice about them – still, as casual about them as the weather.

Yet couple of times a year, they increase to 10 or 12 a day. During these times, we can’t help but feel that rising sense of alarm: is this the beginning of a return to 864? What will that mean for our little girl? Every time, we manage to bring them under control.

But, like the weather, our sense of control is only as secure as the next hurricane.

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