Epileptic parenting
Our 7 week old baby was diagnosed with epilepsy when she was 20 days old. She has a cortical dysplasia which causes her to have a range of seizure types as well as repeated clusters of spasms, sometimes into the hundreds, throughout the day.
We understand it will very likely be drug resistant and have already cycled through a range of medications trying to find something to reduce the seizures (nothing yet achieving zero seizures), likely working towards surgery but without any guarantees of seizure freedom. This sub has been a great source of information and insight as we have tried to learn about epilepsy and we’ve been encouraged by the existence of such an active and supportive community.
One thing that’s stood out to us is a few people sharing that they found it hard telling their parents when they’d had seizures because of their parents’ reactions (them getting upset/clearly feeling sad etc).
We would love to hear from the community, in an ideal world, how would you like (or would you have liked) your parents to have reacted to seizures or supported you through a childhood with epilepsy?
What is the best way for someone to respond when you tell them you’ve had a seizure?
And when you’re having a seizure or coming round from one, what do you want people to do and to act?
We want to foster the right environment as best as we can for our baby as she grows up with this! Apologies if any terminology used is not quite right - we are very new on this journey, and want and need to learn!