second opinion and clear diagnosis

We go into NYC for our second opinion.  Dr. Devinsky at NYU.  We see two doc’s at NYU comprehensive Epilepsy Center; they work in a team.  They think her EEG’s are a bit atypical for BRE (Benign Rolandic Epilepsy) and want to do a longer EEG to get a better idea of what is happening.  We can do a home EEG (how cool!).  We go into NYC on a Friday, have Ella hooked up.  She is attached to a mini computer which is recording her brain activity for 48 hrs.  She does GREAT and never complains even though she has 20+ wires attached to her head and hanging off her head ( Joe calls her Rupunzel!).   We keep the ‘computer’ in her backpack which she wears or has right next to her all the time.  By Saturday she is used to it and able to carry on about her day w/ all this ‘stuff’.  I really am amazed by her patience w/ it all.  We unhook her on Sunday and Joe drives into NYC early Monday to drop off and have the EEG read.

We here from Dr. Devinsky on Wed to say 95% sure it is BRE…the better diagnosis.  We see dr’s on Monday and think they will say no meds needed.  We are wrong- sort of .  One doc does not think she needs med’s right now.  Although he calls this a very gray area and feels like we have to do what feels right/comfortable for us.  Dr Devisnky comes in and says that he recommends medicating her at night to calm all those abnormal spikes.  Also saying that there is no way of knowing if the next seizure will be much worse than the first two and then cause damage that cannot be fixed…scary.  Also said although she is sleeping fine it is not as restful as it should be.  He likened it to trying to sleep while someone is continuously poking you in the same spot  A   L   L  night long.  You could sleep, but you might wake more, toss more, etc.  Not very restful.

Decisions to make.  We leave w/ prescription for Keppra, a headache, a heavy heart and a BEAUTIFUL, happy, smart little girl.  It could be so much worse.

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