Our Experience with Epilepsy: Part 2 Medication and Doubt

So, continuing our story of life with Esmé’s epilepsy, I will pick up when we finally started her on Keppra after a clinical diagnosis of epilepsy over six months after her first apparent seizure.

Everyone said that Keppra was one of the anticonvulsants with the lowest rate of side-effects. And, like with all anti-convulsants, we started slowly…

But, Keppra made her a zombie. It was awful. She just sat and stared…oh, and vomited. She lost a pound in two weeks. She refused to play with anything except for one toy that her physical therapist left for her, a hipposaurus that plays music when a ball is dropped in. She would sit up holding completely still until the music stopped. Then she woud reach for the ball, often missing (due to what we think was double vision). If she got the ball into the hipposaurus all was right with the world. If not, she would whimper.

All of this for seizures we weren’t 100% sure were seizures at all. We thought there might have been fewer seizures on the keppra, but we weren’t on it long enough or at a high enough dose to prove anything.

So, yeah we stopped the keppra, but it took weeks to slowly wean her off and for her to go back to being Ezzy again.

And then we just went without a parachute for awhile. She had seizures once a week or so. They were fairly mild. We got into the routine with them…and they were always short. We figured that the drug reaction was so much worse than the seizures. We could deal.

The she had a big blue. She’s only ever had a handful of the big blues, and this was her first. She often gets blue with a seizure, but she will come back quickly to her typical coloring. With the big blues she doesn’t. She goes limp, passes out, and stays blue. She needs to be stimulated to breathe again.

The first big blue took place in a hotel in Montréal…where we were celebrating the tenth anniversary of my hubby and I starting dating. We called 911 and were brought through the hotel lobby with Esmé on a stretcher. She continued to seize every two or three hours for approximately 36 hours while in the Emergency Department of Montréal Children’s Hospital (a horrifying experience in approximately 1 million ways, deserving of its own story).

Although they did not hook Esmé up to EEG monitoring during this time, there was no doubt expressed among the doctors that Esmé was having seizures. She showed all the tell-tale signs of seizure: Oxygen desaturation and heart rate increase. This is where, in my opinion, American medicine can get off base, by relying too much on looking for more data, more proof, more testing when the answer is already fairly obvious.

They were able to load Esmé with a dose of dilantin (typically a temporary treatment) in order to stop her seizures and help get us over the border and back home to her regular doctors. The fact that the dilantin stopped the cycle of seizures further confirmed the diagnosis of seizure. And what was now clear was that first, we could no longer travel further than 3 1/2 hours from our preferred hospital, and second, we could not afford to not treat her seizures.

At this point we started another drug, trileptal (oxcarbazepine). And crossed our fingers while titrating up her dose. The good news with trileptal was that she showed no signs of side-effects and for several months she did not have another big blue. However, she did continue to seize approximately every week. Some weeks we would think it was working, and then not so much. We slowly increased the meds a few times hoping for it to kick in before the dose for her body weight was “maxed out” or her blood levels were too high.

No luck…and again we found ourselves working without a net.