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license had been revoked and she earlier asked me to promise not to drive) and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…
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| 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.
.