I’m going to keep this post short and sweet, and will work on a more generalized update in the coming week or two. Life is a bit chaotic right now, as I’m sure many of you can relate.
On Tuesday Ladybug and I made the snowy trek to the London Children’s Hospital. It was a very long, but necessary day.
Ladybug had been having an increase in tonic clonic seizures over these past two years, and thankfully, they now seem to be somewhat under control with medication. She still has them if she hasn’t slept well or is fighting off a virus, although they are pretty quick and don’t require *rescue meds.
We have, however, noticed that watching her favourite musicals on the TV or lights turning on/off have been triggering something. Tuesdays EEG confirmed what we were worried about.
Ladybug is now having strong photosensitive/photoparoxysmal response (PPR) myoclonic seizures. When visual stimulation such as flashes of light, provokes an epileptic seizure, it is called a photic-induced seizure.
The general triggers are usually flashing lights (like strobe lights, camera flashes) or flickering images, even sunlight flickering between trees or on the water, television (TV), video games, and environmental lighting. This information all passes through the eye into a part of the brain called the visual cortex. The visual cortex then sorts out the images received by the eye. Flashing, flickering and repetitive patterns cause the visual cortex to be overloaded with images and this can cause a seizure in people who are sensitive to this trigger.
While we can certainly reduce the amount of triggers, it is simply impossible to remove them from Ladybugs life entirely. They are very difficult to treat, and because of the rate at which she has them and how quickly they are caused, we need to try and get them under control as soon as possible. She will be starting an additional medication immediately, with the hopes that it will help. The alternative is not something I wish to share or think about at this point.
God willing it will work. If there is one thing I’ve learned in the past 11 years of being Ladybugs mama, it’s that she is one heck of a fighter.
“And though she be but little, she is fierce.” Shakespeare
*Rescue Meds are generally fast-acting, which means they will start to work quickly to stop a seizure once they get into the bloodstream.
