Cody just had a 5+ minute seizure.  That is a first - usually his seizures are 2 minutes or less.  We gave him diastat during it which took a couple of minutes to work.  Then we called 911 and they just left.  He's passed out.  We elected not to transport him to Children's ER after talking to the neurologist on-call.  The only weapon the hospital has is diastat as well - which we have at home.  If he has another one though, we will have him transported to the ER and admitted.

So here is what they think may be happening - he was at the ER a few days ago after having stomach/gastro distress.  He was floppy and lethargic for 4 days which is very dangerous for a child with mitochondrial disease.  His body doesn't produce enough energy to support his organs as it is - so when he's sick at all - it depletes his energy even further.  He had just recovered from the gastro attack, only to get a cold yesterday.  They think the cold spiraled his energy stores down further, which means he has less energy to support his brain.  Hence, the longer seizure. 

So...not to be dramatic...but this scenario was described to us by his neurologist.  Kids with mito disease get a virus (which Cody did).  They can't kick it.  Their immune system is depleted, as are their energy stores.  So they get another illness (Cody got a cold on top of the gastro bug).  They spiral down further.  Their organs begin to suffer - as his brain seems to be doing.  They spiral down further.  They can't rebound.  And that is why the mortality rate is so high among children with mito disease.

So please pray that Cody rebounds - that we don't see anymore status seizures - and that this cold dissipates rapidly so he can re-gain much needed energy.  This is a critical window of time for him.

Not to mention that our lives are now changed forever.  We will never feel comfortable leaving him alone again.  Prior to this status seizure, at least we could leave him occasionally knowing that his seizures always stopped at 2 minutes.  Things are clearly changing. 

Thank you so much,

Shawna