What is scarier than being in a Hospital? Being Home…

Fact:  Alexander has seizures.

Fact:  They can border on the “uncontrollable” side and last for hours.

Fact:  We have not had a seizure since 2011 that has not resulted in an emergency helicopter transportation to the hospital and more medication than we can administer at home to break it.

Fear:  IF it takes 9mg of Valium, 1mg of Ativan, 100mg (? that seems too high? but I know it was 100ml) of IV Keppra, and 2 loads of Phosphenatine (have no idea of the doses there…. they are only referred to as IV “loads”) to break a seizure in 5 hours…. how long would Alexander seize without the medicine?

Fact:  Alexander has not had a seizure since June… so we were lulled into a sense of false security.

Fact:  Alexander’s seizures have a distinct look.  Eyes OPEN and semi-rhythmic jerking of all limbs while his eyes gloss over.  He becomes pretty rigid and jerks. = SEIZURE.

Fact:  Sometimes, Alexander looks like he is having a seizure and he is not.  When he sleeps, his arms sometimes rhythmically jerk.  These are monoclonic sleep issues.  They are almost like the newborn “sleep reflex.”  These are NOT seizures.  We had an EEG done last spring.  Even though they resembled seizures, there was no seizure activity in the brain. 

 

Everyone clear so far?  Awake = seizures.  Asleep = startle reflex.

 

At the end of Alexander’s seizure yesterday – something shifted.  After all that medicine – Alexander had different a different seizure.  His eyes were open and unfocused (seizure), but his arms and legs convulsed in quick tremors.  These looked completely different than the big jerks we’ve always seen.  I believe this difference was due to the massive amounts of drugs ripping through his system.

 

Fact: We’ve had 3 more “episodes” since last evening at 10 pm.  One episode over night and two today.

Fact: All 3 episodes were – eyes closed, but the arms and legs convulsed in quick tremors.  A completely different pattern again. 

Here is the question:

Are these – sleep episodes that have different body jerks due to all the drugs?

or…. Are these seizures that have eyes closed due to all the drugs?

One moment – everyone is in agreement – seizures.

Next – everyone is convinced it is sleep… (except me).  And we are discharged.  (Did I mention the ER was overflowing with people in the hallways and no more rooms?)

 

Fact: We are home.

Fear: The episodes are not sleep episodes…. they are seizures.

Fact:  I am afraid.  Tonight will be a long one.  I can’t wait for our seizure dog. 

One final Fact:  We survive on the foundation of support.  People just continue to support us.  Our hearts overflow.