Sam has intractable (drug-resistant) epilepsy. Of all his issues, this is the one I’d most like to take away from him.
Just as we think we’ve got the hang of identifying seizures and triggers, epilepsy changes the rules and suddenly seizures don’t look like seizures anymore.
This week yet another ambulance trip returned my boy to hospital, this time a seizure cluster which had shown no sign of abating at 28 minutes.
For the record, most seizures he has are over in seconds, or a couple of minutes. Tops.
A seizure lasting this long makes us sit up and take note because it’s a forerunner to something else brewing (in this case, a throat and ear infection).
And as we sat next to him in children’s emergency, and he flirted unrepentantly with the nurses, we clocked multiple strange movements… his eyes deviating over to one side hen back again… repeatedly.
Strange, noisy breathing patterns starting together with increased secretions. As a rule, if a movement or action occurs in a repeating pattern over several second/minutes then it’s likely a seizure.
Even the Dr’s often struggle to identify them. Not all seizures are the arms-flailing, not-breathing, convulsive variety.
And I actually find these myriad of smaller seizures more distressing, because I don’t know if a smile is due to seizure activity pulling the muscles.
Or if the happy movements my boy is making are genuine joyful movements or yet another seizure assaulting his brain and body.
It’s exhausting for him, and devastating to have to stand by and watch.
Did you know there are over 40 different types of seizure? I didn’t either, until my boy developed epilepsy.
Seizures have been a massive part of our lives now for almost 7 years and it is the hardest battle we’ve ever faced.
Not every seizure looks like one, so next time you see someone confused, wandering around looking lost or vacant, don’t just assume they’re drunk.
They could be in the middle of a seizure. Be kind, always… you don’t know what someone else is dealing with.