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As a Parent, Dealing with Your Child's Epilepsy

Sun, 01/31/2016 - 17:27

I have twin daughters who are 13.  One has just been diagnosed with juveline myoclonic epilepsy:  in the past year, she has had 2 clonic seizures.  We weren't sure the first one was a seizure as we missed most of it as it happened at 4:00 a.m. when she walking around our niece's house.  We witnessed eye fluttering, jerks and then the clonic seizure on December 29. 2015.  The diagnoses was made the next day.  Our daughter is currently on a regime of medicine, keppra twice a day, and a titration up to 200 mg. of lamictal at the end of February.  At the end of February, she will come off the keppra.  We were also given diazepam to be administered rectally if she has a seizure that lasts more than 2 minutes.

I was pretty calm about the entire situation until my other daughter mentioned that 50,000 people die of epilepsy every year.  I spoke to someone on the foundation chat line today--I have been quite worried about this since the seed was planted.  I was told that is sudden unexplained death from epilepsy (do I have that right?), and that death occurs not necessarily from the seizure itself but often from resulting complications and for people who are not receiving treatment.

Yet, how as parents do we keep from worrying about our children with such a disease?  It is all new to me, and I feel like I am always waiting for the other "shoe to drop" so to speak when in the future, she might have another clonic seizure.

Any input from parents who are learning to manage and have managed the care of an epileptic child would be appreciated.

 

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