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Saturday, March 26, 2011

Epilepsy Awareness

  

Bookscoops encouraged others to read books about epilepsy or to share their own story today.  I first learned about this post from Good Clean Reads.  So here I am.

My son may not officially have epilepsy, but he is treated, medically, as if he does.

A person is considered to have epilepsy when they have two or more unprovoked seizures. (Read more at the Epilepsy Foundation.)  E has had one, but extremely severe.

My daughter had two febrile seizures.  Scary?  Terrifying!  However, febrile seizures do not act like unprovoked seizures-seizures that have no known cause.  My son had a three hour seizure.  At first I thought it was just a febrile seizure.  But it wouldn't stop.  Not even an hour later after we had arrived at the "local" children's hospital.

The seizure went on and on, though it changed in how it looked.  Initially it looked like he was convulsing, which just means that his muscles would tighten and relax.  After a while he stopped, and had the empty stare and his legs would "bicycle."

Eventually he came out of it.  He spent his first birthday in the hospital, barely able to hold his head up.  (You can read more about this by scrolling through the health label.) 1 1/2 years later he has not had another seizure!  He takes Keppra (an anti-seizure med) twice a day.  We don't know if the medicine works or if he is no longer prone to a seizure.  In a few more months (as long as he remains seizure-free) he will begin to slowly wean from his medication.

Amazingly, God gave us two children who were both in life threatening situations because of their own bodies.  You can read more here if you wish.   Also amazingly, both children's health problems were able to be controlled with medication.  Each of us, no matter what, is fearfully and wonderfully made.  Thank you, God!

Seizures come in many different forms (including staring off into "space").  If someone around you ever experiences a seizure, make sure that he is on his side, and then call 911.  Do not put anything in his mouth or try to restrain him.

In my son's case-and most who have a history of seizures-we have a medication called Diastat (a suppository-even for adults) to give to him if the seizure lasts for more than 3 minutes.  With seizures, they are rarely life threatening, but they can cause brain damage and sometimes the person can stop breathing when they last for a long time.  It's actually only by God's grace that our son did not experience brain damage.

2 comments:

Ticia said...

My neighbor's son has the stare off into space seizures, and those really scare her too because if he's walking he'll keep walking and not be aware of what he's doing.

Dorie said...

Siezures are very scary...I only remember being around one once, and I can't imagine how terrifying it would be to be the parent. So thankful that he has gone so long without any reoccurring.

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