My last post had no resolution. I anticipated this one would, but I was wrong.
Zacchaio was discharged home on Tuesday night after a 6 night stay at UCSF. Being discharged from the hospital is normally reason to rejoice, but knowing we were coming home to a life full of epileptic uncertainties made our departure rather bittersweet.
Prior to leaving, we spoke with our epileptologist, Dr. Cilio. Based on Zacchaio's EEG, he has regular interictal spikes (electrical discharges between seizures) that last 1 second every 4 seconds all over the right hemisphere of his brain. They technically aren't considered seizures because they don't last at least 10 seconds. There had also been no signs of his blue seizures since his admission six days earlier. Although the episodic winking of his right eye appears to be seizures clinically, due to a lack of correlation between them and EEG spikes, she is calling them involuntary motor responses. Per Zacchaio's MRI, no structural abnormalities are causing his seizures, therefore we continue to live in the daily bewilderment of his being. Every epileptic child is a unique puzzle, and every passing day will provide us more clues as to how the pieces fit together.
|Right temporal lobe epilepsy|
Tuesday, June 17th
5 blue seizures.
It was an unfortunately eventful day. The antiepileptic medication, Trileptal, was supposed to keep the blue seizures at bay. We were scared and discouraged and realized that Zacchaio needed 24-hr observation until his status was more stable. We alternated being awake with him through the night in 3-hour shifts, hopeful that his seizures wouldn't cluster or last longer than 3 minutes (thus requiring his rescue medication, a 9-1-1 call, and a prayer asking that he sustained no brain damage).
Aidan and I found ourselves struggling in our new role as parents of an epileptic child. Will it always be like this? Will we ever be able to leave the house again? Where do we put the rescue medication so we eliminate the possibility that it's ever forgotten? Can he ever sleep in his bed again? How do we know if he seizes at night? How do we know if he seizes in the car?
We always envisioned ourselves thriving as a family... Right now we were merely surviving.
Friday, June 20th
In the moment it felt like his condition was worsening. His Trileptal blood levels should have been more therapeutic and therefore decreasing the frequency of his seizures. We called the on-call Neurologist multiple times on Thursday and just as many times on Friday.
Recommendations evolved with each call:
- "Just be patient and give the medication time to be therapeutic."
- "Is he recovering on his own after seizures? Is he tolerating his feeds?"
- "We're not concerned unless his blue seizures last at least 3 minutes or he clusters 5 seizures in one hour."
- "Let's increase his Trileptal to 2mL from the 1.5mL we've been giving him."
- "I'm thinking we add Phenobarbital back because he was so well-controlled with it in the hospital."
Zacchaio had been diagnosed with epilepsy just one week ago and he was already failing his first anti-seizure medication? I can't say I was surprised. A number of those diagnosed with Linear Nevus Sebaceous Syndrome and epilepsy had failed all mainstream anti-epileptic drugs and succumbed to taking non-FDA approved medications. A bit frightening.
Our epileptologist is currently spear-heading a CBD drug trial for children with intractable epilepsy out of UCSF. Zacchaio cannot qualify to be in the study until he has failed at least four anti-epileptic medications; it's nice to know, however, that incredible resources are at our fingertips.