This topic is critically important for all people living with epilepsy.
My friend, Tom McGranahan, Jr., is author of Under Siege, a book in which he writes of his own life experience with epilepsy. Tom’s personal history includes poorly controlled grand mal and complex partial seizures from childhood until his current, excellent control following four partial temporal lobe surgical resections.
Tom wrote the essay below on his website: http://www.epilepsyintheopen.com. Its advice communicating his personal and practical wisdom will be very helpful to readers.
Telling Your Children You Have Epilepsy
By Tom McGranahan Jr.
Which of us parents want to tell our children we have epilepsy? If medicine is controlling our condition and we’re not having seizures plus they haven’t seen one, why should they be told? And what can we say if they do witness us have a seizure?
Ironically, on the night our first daughter was born; I drove my wife, while she was in labor, to the hospital (my license had been revoked and she earlier asked me to promise not to drive) and arrived there just in time. I left her in nurse’s hands and while returning to the car – had a complex partial seizure in the elevator.
I could not & would not hold our first daughter while she was an infant—my seizures weren’t yet completely controlled. I could hold our second daughter when she was an infant while others were around. But I could not and did not baby-sit them… Anyway, there are many hurdles to overcome. I guess it all comes down to the type of family they are part of.
It is simply impossible to shelter our young children from reality. Hopefully they don’t actually see us have a seizure. But how can they not notice sooner or later the daily takings of medicine, pharmacy store visits or parent being asked, “Have you taken your medicine”?
What advice is there for children who are coping with their parent’s epilepsy and have questions about the medical conditions and treatments?
First it’s quite important for us to understand the type of personality that our child has along with the information they’ve been receiving, especially, the different age kids. So we can expect children under the age of 5 to know very little but the little bit that they do know might be very confusing. They can think of these as different events and on top of that watch and feel their parent’s temperament about it. And the older children will feel alienated if not told about it.
So, it is all right to admit that, in some days, you’re not handling it well. Staying positive during our troubles shows (our children) how to keep up their self-esteem during trying times. That’s an important point because it helps them accept the days they are not handling things well.
It’s necessary for parents to tell their kids what’s going on in a way that they can understand. That would comfort the children and offer them a sense of security.
Describe the overall facts:
- It is a treatable disorder.
- It is important to realize that most seizures are very short and stop by themselves.
- There is no known cause in 50% of cases.
- Any person can have or get epilepsy from a head injury.
Tell them what a/your seizure is like:
- Can be staring away and not responding.
- It is a: partial (or complex partial, or generalized) seizure.
- Do not always have control of actions.
- Eyes may roll up briefly, and the lips turn blue.
- Can fall down or collapse.
- Parts of body can start shaking.
- Mouth can be foaming.
Inform them how to best respond:
- Nothing is to be put in the mouth; you can chip teeth or terribly injure your fingers. (It is not really possible to swallow the tongue, though tongue biting could occur).
- Stay out of reach from the patient for they cannot always keep control of their body.
- Relax and not start crying or screaming because it goes away fast (Though at times during seizures there will be other people out of control, crying and being hysterical which can be very distressful for the kids).
- Inform other people or parent or neighbor about the seizure.
- After seizure has ended ask someone or try yourself if need to – to roll them on their side.
- Call for ambulance only if:
- The seizure lasts more than 5 minutes.
- Parent is having difficulty breathing.
- Parent is having repeated seizures.
- Parent takes a bad fall, starts bleeding
Tell them because of seizures you may require some restriction of activities; diving head first off diving board, heading soccer ball, stay up late to watch a movie…
A common school day can put stress on any child. So tell them not to talk to any classmates about their parent having epilepsy. It, unfortunately, can still be a real source of embarrassment or stigma.
Ensure your child the majority of people with epilepsy can have their seizures controlled with medications and can lead normal or nearly normal lives. If a parent can believe in their child and convey that to their child, there is likely a crucial bond occurring. Say to them your epilepsy care/conditions is not the most important thing that’s happening.
We’re teaching and modeling for our kid’s ways to handle things when mistakes are made. So it is all right to admit that, in some days, you’re not handling it well. Staying positive during our troubles shows them how to keep up their self-esteem during trying times. That’s an important point because it helps them accept the days they are not handling things well. Tell them to be a good person, to work hard and to have good values – to do the best they can do, even if that means they fail a test in math or…
|Image courtesy of Tom McGranahan Jr.|
Visit his website: http://www.epilepsyintheopen.com/
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions..