Epilepsy Talk

Your Child Has Just Been Diagnosed With Epilepsy… | January 23, 2011

The diagnosis comes in.  It’s epilepsy.

Your heart drops to the bottom of your stomach.  You may panic…or cry…or call in the troops for support.

Whether your child is an infant, toddler, grade schooler, adolescent or young adult, how you behave now will make a world of difference to their future.

Because, any way you look at it, epilepsy is a bitter pill to swallow…

Whether you’re contending with 4 seizures a month…or 40 seizures a day, the anticipation alone is enough to make your heart stop.

You might feel…

1. Denial – you can’t cope and you act like there’s nothing wrong, so your child grows up feeling like a pariah.

2. Fear – there’s so many things that can go wrong.  But those who are smothered and over-protected, end up anxious and embarrassed.

3. Pro-active – you’re going to learn all you can.  And then you’re going to share it with your family.  You become educated and empowered.  After all, knowledge IS power!

Personally, since my parents took the denial route (they doled out Dilantin with my vitamins and told me I had “uneven brain waves,”), I’d go for option #3.  But first, I’d get lots of support.

There’s a universe of information out there.  So much, it can be daunting.  But here are a few resources you may choose to start with…

Epilepsy.com has a ton of information about seizures, seizure types, living with epilepsy, seizure readiness, epilepsy first aid and many other resources.  Just click on the orange bars to the left and you’re on your way a  world of understanding.  http://my.epilepsy.com/epilepsy/main_epilepsy

The Epilepsy Foundation has sections on:

Parents Helping Parents  http://epilepsyfoundation.ning.com/forum/categories/parents-helping-parents/listForCategory

The Teen Zone  http://epilepsyfoundation.ning.com/forum/categories/teen-zone/listForCategory

Young Adults with Epilepsy http://epilepsyfoundation.ning.com/forum/categories/young-adults-and-epilepsy/listForCategory

You can also contact your local Epilepsy Foundation http://epilepsyfoundation.org/ for information about activities and in your area.  There are forums and programs for children, teens and adults.  (For example, some of them have very cool one week sleep-away camps for kids.)

And there are loads of friendly, caring, support forums out there.  You are NOT alone.  Epilepsy affects over 3 million Americans of all ages – more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined.

Also, amazon.com has terrific books for people of all ages.  (I have my own library.)  And the Epilepsy Foundation can supply a catalog of books, videos and pamphlets, simply call them at  (800) EFA-4050 or email http://epilepsyfoundation.ning.com/

For a New Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors — compiled by eforum members, based upon their own positive personal experiences, go to  https://epilepsytalk.com/2010/12/03/new-comprehensive-list-of-good-neurologists%e2%80%a6epileptologists%e2%80%a6neurosurgeons%e2%80%a6and-pediatric-doctors/

Plus the U.S. News & World Report has an annual survey of Top-Ranked Hospitals for Neurology & Neurosurgery, simply click on: http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery.

Although it’s a long journey (I’ve been traveling it for 40+ years), I hope this information will help you.

And remember: epilepsy is just a (scary) condition.  Your child may be facing epilepsy, but their success in the future depends upon the actions you take now.


6 Comments »

  1. I was diagnosed as a child with epilepsy. I am glad that my parents did not smother or overprotect me. They treated me as a normal child.

    Like

    Comment by ruth brown — January 23, 2011 @ 12:57 PM

  2. Lucky you. My parents were in complete denial. It wasn’t until I almost died 2 years ago, that my mother began to say the “E” word!

    Like

    Comment by Phylis Feiner Johnson — January 24, 2011 @ 12:38 AM

  3. Phylis, you almost died? You went into status. I have been there about 3 times.

    I am sorry that your parents could not accept the fact that you had epilepsy and face the challenge to help you.

    Mine probably accepted it because it is herideraty in my family. I was disowned after my grandfather and father died. They were the only ones keeping me in the family.

    Like

    Comment by ruth brown — January 27, 2011 @ 8:40 AM

  4. That is so sad and painful to hear…

    Like

    Comment by Phylis Feiner Johnson — January 28, 2011 @ 2:16 AM

  5. My 2 cents 🙂 Or maybe just a repeat of what most sites/support groups will tell you: Children are very resilient. Especially when they know the facts. Educate yourself & your child! Take a Deep Breath, Act Normal, Be Normal & continue to treat your child as ‘Normal’ with a few limitations.

    Please, can Anyone tell me What ‘Normal’ IS? 🙂

    Love Candi

    Like

    Comment by candi — February 4, 2011 @ 2:05 PM

  6. […] child has just been diagnosed with epilepsy… « Epilepsy Talk via Your child has just been diagnosed with epilepsy… « Epilepsy Talk. This entry was posted in Epilepsy and tagged Epilepsy. Bookmark the permalink. ← Sleep […]

    Like

    Pingback by Your child has just been diagnosed with epilepsy… « Epilepsy Talk | Living With Epilepsy — February 6, 2011 @ 3:21 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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