Living with Epilepsy

ref=sr_1_1March is finally here.  March is the month for re-birth.  The clocks spring forward, the days grow longer and the promise of warmer weather does not seem so far-fetched.

March is also Epilepsy Awareness month.  This year those words are not simply words written at the top of my calendar page.  This March marks 6 months since my youngest son was diagnosed with epilepsy shortly after his second birthday.

It was a harrowing several months for our family.  Unsure what was the cause of the seizures my toddler visited various doctors and underwent many specialized tests including an EEG and an MRI.  Most terrifying was the thought that my son had a brain tumor or a debilitating congenital disease so when the diagnosis of Epilepsy (Complex partial seizures) was handed down, the relief that I felt was unlike anything that I have ever known.

Despite the fact that more than 300,000 Canadians live with epilepsy, myths, misconceptions and stigmas still abound.

  • Epilepsy is a physical condition characterized by sudden, brief changes in how the brain works.  It is a symptom of a neurological disorder.
  • Each day in Canada an average of 42 people will learn that they have epilepsy.
  • It’s physically impossible to swallow your tongue, so don’t try to force something into someone’s mouth who is having a seizure.  You could cause them more harm.
  • The medication that exists today helps people with epilepsy live full lives but it is important to note that it is not a cure.  The medication acts like a goalie and will not be able to stop all seizures from manifesting.  Unfortunately for some people, medication does not work at controlling their seizures.

If you know someone who has a child that has been recently diagnosed with epilepsy, might I offer a few suggestions?

  • Moms are a crazy bunch.  Their fears kick into overdrive even though some of them are unfounded.  Don’t tell them to calm down, instead listen to their fears and be a shoulder to cry on.
  • Don’t suggest that it’s “no big deal” and go to list all of the people you know with epilepsy living full lives.
  • Don’t say, “It’s not so bad”.  You’re right, it is not so bad, but it will take some time for the family to adjust to their new normal.  As with any change, it will take time (and possibly a few tears).

I have found several resources to be helpful for our family.

Epilepsy Canada (this is where all of the facts for this post were found)

Mommy, I Feel Funny!  A Child’s Experience with EpilepsyDanielle M. Rocheford (author) and Chris Herrick (illustrator)

Growing Up with Epilepsy: A Practical Guide For Parents Lynn Bennett Blackburn, PhD.

Epilepsy: 199 Answers: A Doctor Responds to His Patients’ QuestionsAndrew N. Wilner

Seizures and Epilepsy in Childhood:  A Guide for Parents, 3rd Edition – John M. Freeman, MD, Eileen P.G. Vining,MD, & Diana J. Pillas

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7 thoughts on “Living with Epilepsy

  1. I’m sorry to hear this but you did a good job with the three things to never say. You are spot on about that. I wish you every bit of wisdom and help that you might need. You already the most needed things, love and support. Hugs to you.

    • I am sorry to read this. It has been an emotional road for me. I spent months crying every day and fearing what life would be like for my son. I am in a better place now and the meds he takes have proven to be very successful. It took a few adjustments before finding the perfect medication and dose for him, but now that we have life is returning to a (new) normal. Those books that I listed have helped me profoundly – and I stay off the Internet unless I know it is a reputable source. Wishing your son and family all the best.

  2. I didn’t realize march was epilepsy awareness. Thanks for being an advocate. This is all great advice and a very solid list of resources.

  3. So glad to see someone else blogging about epilepsy! Myself and my son were both diagnosed with epilepsy within 3 months of each other when he was 9 months old. You have some great advice for mum’s here, I wish someone could have shared this with our family and friends. Please come and check out my page http://www.thelionssecret.com to learn more about us and our journey to raise awareness and education for people living with epilepsy. Best wishes to you and your family.

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