Thursday, May 4, 2017

Ben Lately

Ben has had an interesting (but not necessarily bad) time of it lately.
He usually clusters approximately once a week.
In April he went three weeks in between clusters.  He had some random seizures here and there in those three weeks but we never needed to administer his Diastat to stop several in a row.
(at Grandma's house sleeping it off)

He had several seizures within a 24 hour period at the very beginning of the month but they were more spread out than usual and so I held off on the Diastat.  His last one was late in the evening.  He just lay on the floor afterward which is normal, but he never really came around.  After several minutes he will usually try to talk and get up and walk around (even though he doesn't have his balance).  This time he was very non responsive, even when I put him in bed.  He wasn't talking at all and his eyes were distant...he didn't even try to move.  I fell asleep soon after I put him down and woke up in the early morning hours when it was still dark.  Ben had not moved...and his eyes were open.  I realized he had probably never fallen asleep!  I snuggled down next to him.  His eyelashes were on my cheek so I could feel when he closed his eyes.  Many times he slowly blinked a few times in a row and I kept thinking he was finally falling asleep.  He never did though...his eyes always opened back up into that blank stare.  I started realizing, with the help of Google on my phone, that he was probably in non-convulsive status epilepticus (basically a constant seizure).
I don't think we had ever seen that before.  He used to have convulsive ones years ago when we still didn't know his diagnosis.  His longest one was 40 min.  Thankfully, we were already in the hospital with him then.  After much worry and prayer that morning, I finally decided I needed to give him the Diastat.  It seems obvious that's what I should have done all along now that I look back on it but in the moment I was confused.  
He fell asleep almost immediately after I administered the meds.  I believe he even said, "Maimee" and I was able to take a deep breath and cuddle my little man without being worried any more.
Man, there are times when you wonder if 'this is the time he won't make it through'
Your mind just can't help but go there at worrisome moments.
I was so relieved when he fell asleep and so grateful for another day with our sweet Ben.

After that episode though he was still not himself for several days.
Anyone that knows Ben well, knows that he loves to line things up...trains, cars, spices from the spice drawer, magnets from the fridge etc.  He is quite precise and particular about how they are lined up too.  Always engine to caboose, nose to tail, front to back.  He will move an object several times before it is exactly as it should be and then move on to the next one.
Two or three days after his status seizure I noticed him playing with his cars and trains and realized he was trying to line them up.  Look at that poor little line!  It made me so sad to see this :(
However, he is back to his neat lines again and it is a joy to see :)

Recently, after brushing his teeth, I went to rinse out the brush and noticed something stuck in the bristles...Ha!  We never know when or where a tooth will come out...and I think I've mentioned on the blog before that we don't know where most of them end up...they're just all of a sudden gone.  So it was fun to see this one's journey.

The last few pictures I just wanted to share because they were awfully cute.
I walked in to go to bed one night and found him like this...
(I caught him yawning in this one)

Totally out!  The flash on my phone didn't even phase him :)

I'm sorry this became a much more lengthy post than I had originally intended.
I don't even know if it made much sense but there you have it.


  1. Makes sense to me! This precious little guy has my heart--and Bapa's!! : )

  2. Glad you posted this update on Ben - I think of him often and wondered how he was doing. Such a little cutie!