Children with Epilepsy– Families Tell Their Stories
Here we have a playlist of 4 videos highlighting 3 young children and 1 young lady in her 20s living life with epilepsy. The total playlist of videos is about 50 minutes long. If you don’t have that kind of time– or that kind of attention span– I would recommend using the fast forward buttons on the bottom right of the video frame to watch videos 3 & 4 about Ella and Tonje, although all the videos are good and the title of my post is from video 1.
From our ever-so-helpful, Wikipedia, epilepsy is “… a group of neurological disorders characterized by epileptic seizures. Epileptic seizures are episodes that can vary from brief and nearly undetectable to long periods of vigorous shaking. In epilepsy, seizures tend to recur, and have no immediate underlying cause”…. “The cause of most cases of epilepsy is unknown, although some people develop epilepsy as the result of brain injury, stroke, brain tumor, and drug and alcohol misuse. Genetic mutations are linked to a small proportion of the disease. Epileptic seizures are the result of excessive and abnormal cortical nerve cell activity in the brain.” Thank you, Wikipedia!
I love the attitude of the people in the videos. They have all come out the other side of this disease. They do not feel they are epilepsy, they are average people who happen to have epilepsy.
I’ve never witnessed a tonic-clonic seizure before thankfully. When I was getting my volunteer hours to apply to physical therapy school, I had the pleasure of working with a child with cerebral palsy, who also had seizures in hippotherapy— therapy done with the client on horseback! This child’s seizures were what’s called absence seizures, meaning they would appear to just space out for about 10-15 seconds and then would come back. These were not scary at all once I understood what was going on. Actually, until the therapist I was assisting drew my attention to them, I thought the child was just ignoring me! Which sounds odd, but this particular child was not very verbal and had some behavioral issues including following directions.
However, it’s the tonic clonic seizures everyone thinks of, especially with epilepsy. So for safety sake, what do you do if you come across someone having a seizure?
So, first make sure you’ve got an eye on a watch or clock to time the seizure. If you don’t have one, give this task to another person on the scene. “Standerbys”, I call them, always like to feel like they’re contributing. So if you can give them a job to do, they’re less likely to get in your way and less likely to panic themselves. Then clear the area of people and objects. This is another good “standerby” job. Cushion the person’s head as much as you can, so the person having the seizure and those nearby aren’t injured. That’s really all you can do. DO NOT try to stop the trashing, or put anything including your fingers in their mouth. (They will not swallow their own tongue.) Once the person starts to come out of it, roll them on their side into the recovery position. At this point you can look for medical ID bracelets or necklaces, or simply ask them if they’ve had a seizure before. If they have, just tell them they’ve had another and how long it lasted. That way the person is armed with information when they next see their neurologist. However, if the seizure lasts longer than 5 minutes, they’ve never had a seizure or they don’t seem all with it, go ahead and either call emergency services or get them to an emergency department soon!