Friday, October 14, 2011

SUDEP (Sudden Unexplained Death in Epilepsy Patients) and life threatening seizures.

Hello friends,This is going to be a very tough post for me to write,but I feel there is so much mis-information out there about Intractable Epilepsy and seizures,I wanted to offer some clarity.

First let me clarify, Epilepsy is defined as:
Epilepsy (from the Ancient Greek ἐπιληψία (epilēpsía) — "seizure") is a common chronic neurological disorder characterized by seizures.These seizures are transient signs and/or symptoms of abnormal, excessive or hypersynchronous neuronal activity in the brain. About 50 million people worldwide have epilepsy, and nearly two out of every three new cases are discovered in developing countries.Epilepsy becomes more common as people age. Onset of new cases occur most frequently in infants and the elderly. As a consequence of brain surgery, epileptic seizures may occur in recovering patients.
Epilepsy is usually controlled, but not cured, with medication. However, over 30% of people with epilepsy do not have seizure control even with the best available medications. Surgery may be considered in difficult cases.Not all epilepsy syndromes are lifelong – some forms are confined to particular stages of childhood. Epilepsy should not be understood as a single disorder, but rather as syndromic with vastly divergent symptoms but all involving episodic abnormal electrical activity in the brain.

The Epilepsy Foundation itself constantly promotes this " I have Epilepsy it doesn't have me stuff."

I understand what they are trying to say about not letting seizures and Epilepsy control your life,but for those of us who have children and family members that are not controlled,it does take over a big part of your life and can even end your life.

Unfortunately a lot of people are under the impression that people that are Epileptic just take a pill and are fine.
That's just not always the case.

There are those that have had brain surgery.

Have had a VNS implant.

Take a mountain of medication and the seizures still continue.

An EEG showing seizure activity.

                             Michael having his VEEG.

                       Daniel having his VEEG.           

   Ariel having her VEEG.If you click on the picture to enlarge it,you can actually see by her eyes,that she is in a seizure.                              

My children are some of those people,that despite lots of different forms of treatment,they continue to have seizures and are quite debilitated because of them,especially Daniel and Ariel that are Intractable (Uncontrolled despite treatment.)  

We try to live life to the fullest despite the seizures,but you never lose thought of the fact that SUDEP or a life threatening seizure can always happen.

I did YOUTUBE  videos of both Daniel and Ariel and the changes and difficulties they've both endured from their seizures.


There are so many families that have been affected by uncontrolled Epilepsy.It's not a mild disorder for these families.Their lives have been tremendously impacted by it.

                                               Emily & Ariel


           Sara being read to by her big sister Amy.





Sarah Jane


    As hard as it has been for these families that have been affected by uncontrolled seizures,even worse are those precious families that have lost a child or loved one due to SUDEP or uncontrolled seizures.             

Julie and Chelsea
 Like the Hutchison Family who lost their precious daughter Chelsea due to her having SUDEP by having a seizure in her sleep.

They started the Chelsea Hutchison Foundation

This family lost their precious daughter Kimberly Anne from SUDEP.

This precious little girl was also lost just last week due to uncontrolled seizures.

  You see Epilepsy is not just a mild disorder that is easily controlled,for some it is life or death.                                   

I hope this post can shed a little light on this touchy and painful subject.

Please support The Chelsea Hutchison Foundation in trying to get the word out about SUDEP,they also help to get families Seizure Alert Dogs and EMFIT monitors.


  1. Hi Linn,

    Thanks for a superb explanation. I think you covered all the bases extremely well. I think you were straightforward and offered important detailes.

    Clearly you spent a lot of time formulating your blog and the order in which to share things, so they made sense to those who know very little.

    As you know, I too have seizures, and being alergic to seizure medications, live with similar risks. The difference being, it's not happening to my child/children, which to me would be scarier than it happening to me! Bless you.

    Thanks again for sharing.
    Much Love and Warm Support,
    Ms Lu

  2. linn,

    thank you for sharing your story this way... just wanted to let ya know that my wife and i are dealing with the same situation with our 2 youngest daughters but the seizure disorder is kinda different which is the case with most disorders.. our daughters have myoclonic seizures disorder and get seen every 3 to 6 months for eeg's and mri's. our 2 year old is already on her 2 type of medicine. our 9 month old has yet to start medicine but is going thru genetic testing!! our 2 year old started on keppra which was doing good for a while but just this past visit we had with her neurologist they changed her to lemictal due to her mood swings with teh keppra.. the even scarier thing is that their seizures dont show up on the eeg's and mri's.. well thats a little bit about my family.. thank you for sharing so much about your family..


    ryan smith