Monday, December 15, 2014

Owen & Nonconvulsive Status Epilepticus?

Back in 2012, Owen was diagnosed with  nonconvulsive status epilepticus. What exactly is that? In non-scientific words, it is constant seizure activity--but not grand mal seizures (that is convulsive status epilepticus.)

The only symptom we noticed? Weird changes in behavior. Owen was very withdrawn, not making eye contact, and just not himself. We never made the connection that seizures were happening, and only caught it because we were in the hospital for GI problems and they did a 24 hour EEG while there because of his drop seizures. 

We were shocked! Just when we thought we had this epilepsy thing figured out, we learn something new. 

Back then, it took more than two months of heavy duty anti-epileptic medicine to get him snapped out of it. But when he was out, it was a joy to have Owen back!

So if this all happened two years ago, why am I bringing it up now?

Because...I'm worried that Owen has gone back into status. His behavior has been off since a week or two before Thanksgiving. I chalked it up to his ear infection and stress from schedule changes while traveling.'s getting worse not better. His cognitive ability is greatly impacted. He is trying to hug the wood stove. He's gone back to opening the fire. 

He is not engaging with the iPad, with his siblings, or even snuggling with me or Bryan. He has stopped using the potty and is back in diapers after months of mainly being in underwear during the day. He's like a different kid who doesn't know where he is. And he hasn't been Owen. 

Thankfully when I called the neurologist today, they had a cancellation for tomorrow. Praise the Lord, that has never happened with this particular doctor before, so it is a huge blessing! 

So he'll be seen soon. Now I just have to convince the doctor that something isn't right and try to get an EEG scheduled. That is the only way to make the diagnosis.  

I will be sure to keep you updated on what we learn tomorrow! In the meantime, if you could remember Owen in your prayers, we would really appreciate it! 


  1. Praying for you and your precious son. I love how you love him and work so very hard for him. You are a beautiful mom, thank you for sharing the hard stuff.

  2. Thank you so much for your kind words and encouragement Tammy! We are thankful that an EEG has been schedule for the middle of January, and we will hopefully have some answers then! Take care.


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