After years of observing possible seizure like activity and two inpatient EEGs, it was the ambulatory EEG that finally confirmed the diagnosis: generalized epilepsy.
When the nurse called and confirmed the diagnosis that I read on Caroline’s electronic medical record – I immediately went into special needs mom mode. I inquired about the side effects of the new medicines, made sure they would not interact with current meds and asked for the necessary documentation for medication to be administered at school. I even asked about the words that Google couldn’t help me understand on the EEG report so that I could better understand how these seizures were impacting Caroline.
I am not sure how the medications will effect Caroline. I am optimistic that these meds or others discovered through the trial and error process will control the seizures. Once the seizures are controlled – I am confident Caroline’s quality of life will improve. Perhaps her erratic sleep patterns will normalize and the gigantic swings in energy levels (most days Caroline is like the Energizer Bunny other days she comes home from school lays down and hardly moves) will even out a bit. Caroline’s neurologist has also suggested that it is possible the recent spike in aggressive and self-injurious behaviors could be the result of the seizures.
Until the seizures are controlled we will have no idea as to how Caroline’s body is reacting to them. I am trying to focus on what this diagnosis can give Caroline instead of what it takes away. Hopefully, the treatment will give Caroline greater control of her body and her life.