So...... We got the results from Lily's latest EEG. The neurologist was very happy with the readings he was able to obtain. He was not, however, able to put Lily neatly into a diagnostic box. Hmmmm.....big surprise!!
Her EEG is showing that she is still having fairly significant electrical activity while she is sleeping even while on medication (we half expected this). What he was surprised to note was that pattern of electrical activity was very close to ESES (Electrical Status Epilepticus of Sleep) it is not exactly that. ESES is what his original suspicion was. But apparently Lily doesn't want follow any particular known or understood pattern. From what I understand, at this point, there is no name for what she has it is just a very, very close relative of ESES.
What next? The doctor is going to go ahead and treat this the same way he would if it was actually ESES. We have been seeing significant improvements in her overall development since she started the seizure meds. and that is an indication that they are doing something. She was on the very lowest possible dose of Keppra so we will gradually be increasing it to see if we can bring those electrical impulses under control. The doctor is going to be comparing her original EEGs with this new one to see what the actual, measurable change has been with the change in dosages.
Apparently one of Lily's God given purposes in this life is to confound, aggravate, irritate, and leave the medical community scratching their heads. And she is so sweet and adorable she actually forces them to put aside their institutionally acquired apathy and do something for her!! In this day in age that is an incredibly powerful gift!
That's where things stand for now. We see her regular doctor on Friday for a check up. We are very anxious to see his reaction to all of the changes she has undergone since he last saw her in action. She slept through her entire appointment with him the last time we saw him - LOL!
One more year....
7 years ago
