Leave it to Levi

Today Daddy and I took Levi to meet with the Neurologist to get more specific information on Levi's most recent EEG.  At least, that was what we thought would happen.  Leave it to Levi to keep people scratching their heads.

We were in the waiting room for over an hour and Levi was getting more anxious and loud.  One of the nurses finally said they could put us back in a room if we like but it may be awhile until the Dr would be available because he was running behind.  Levi did awesome getting weighed and measured.  Once in the room, he became anxious and Daddy spun him in the Dr's chair for a bit and then tried to keep him from banging on everything in the room.

The Dr came in and we started talking.  He asked about how often we see seizure activity out of Levi and I told him that ourselves and Levi's therapists notice episodes every once in awhile and they have all been the absence seizures (where it looks like Levi is staring off).  The Dr tells me that Levi has him a little uncertain because he does not present the way children who have the same abnormalities on their EEGs present.  Basically, children who have the type of EEG result that Levi has are already having multiple active seizure types.  We can only confirm one type and it is occasional as far as we know.  By his EEG report, Levi should be having multiple types of seizures that we can see.  

This should not surprise anyone who knows Levi.  He NEVER follows what is "typical" for anything. Never!  So, our plan is to start Levi on a very low dose of seizure medication.  First we had to have blood work done and once that comes back clear, we will start.  In 2 weeks he will have more blood work and then blood work every 6 months while on this medication.  Hopefully we will be able to get Levi to take the new medication without issue.

The Neurologist told me to not assume this medication will prevent seizures.  It may only reduce the frequency of them happening, but that he can still (and he said Levi probably will eventually) have a larger seizure happen. 

So, other than being told that Levi's EEG shows he should already be having multiple types of seizures, we don't know much more than we knew before.  The Neurologist said all we can do is treat Levi by what he is presenting with and address things as they come up.  I don't do well with waiting and seeing when it comes to the boys.  I had hoped to have a little more confirmation and concrete information.  But, I should have known that wouldn't happen with my Levi.