2nd Neurologist's Opinion

When we made this second-opinion appointment we were told not to feed Stella after midnight in case anesthesia was administered if the neurologist wanted to do an MRI.  We were also told to stop all medications after midnight.  Should Stella have a seizure during the night that we found alarming we were told to go to the emergency room.

Our appointment was in the late morning.  Stella skipping a dose of the Phenobarbital made her less catatonic and a little more steady on her feet.  When we met with the second neurologist, Dr. P, we explained all that that had transpired over the past 6 days.  We told him that if he agreed with the current diagnosis of idiopathic epilepsy and agreed that this current treatment plan was our only option that we would seriously have to consider doing the unthinkable.  Just typing these words makes me cry - but we had a long discussion about Stella’s quality of life and we could not bear to let her live out her life in this current state.

Dr. P, noticing how emotional we were, said “I know you’re worried, but don’t jump ahead, let’s take this one step at a time”.  He then sat back and listened to us intently all the while watching Stella’s manner and her every move.  At one point we noticed Stella had that same tremoring that she had been doing for days, as if she was really cold.  He watched her and said “those are seizures”.  So even with the powerful medication she was still having seizures and they were, alarmingly, more frequent - OMG.

Dr. P said the first thing he would like to do was to flush her system and rid her of the Phenobarbital as much as possible.  He wanted her to stay at the hospital while they slowly flushed her system through an IV.  Meanwhile he stated he wanted to look at the actual MRI images for himself.  We told him we would go to the other hospital and pick up a copy of the images on CD and bring them to his office for review – we agree to regroup in 3 hours. 

3 hours later we returned and Dr. P came into the room with a smile and said “you are going to be pleasantly surprised”.  He opened the door and in walked Stella – walking on her own!  She was not 100% but appeared to be at least 90% OUR STELLA!  We asked Dr. P what he did and he said all they did up to that point was flush her system.  He said neither he nor his staff witnessed and “major” seizures, just the smaller “trembling” kind - which he stated was not necessarily worrisome at this point.

After reviewing the MRI images and having spent the last few hours with Stella Dr. P said his opinion based on all details of the past week was that Stella did not have just Idiopathic Epilepsy.  He believes she has Idiopathic Encephalitis (inflammation of the brain of unknown origin) which is causing the seizures.  He believes she should be on a low dose anti-seizure medication.  He has prescribed Levetiracetam (Keppra) 250mg tablets for the seizures (half a pill 3x a day) and Prednisone 10mg tablets for the inflammation.

Dr. P wants a follow-up visit with Stella in two weeks.

We left the office feeling hopeful - Stella walked herself to the car!