Monday night, the sixth of December, 2010 Nemer was admitted to the Hospital for sick Children in Toronto because of uncontrolled seizure-like episodes. I only knew little then that he will leave the hospital after seven weeks.
The night of admission Nemer’s continuous seizures saved him and us from waiting 10 hours in the emergency department before being seen by a doctor. Nurses were rushing in and out the room doing their own thing, drawing blood from him, poking him for the IV; used to administer fluids and medications intraveinously, or via the veins; which became Nemer’s buddy that accompanied him for almost thirty four nights.
Few doctors came to talk to us and ask questions. The last one of them was the fellow resident neurologist who I remember very clearly because it was around 3 am in the morning , I was exhausted and he kept going on and on asking me all sort of questions about Nemer’s health history and seizure history. And what I remember in particular him asking the same question and re-phrasing it three and four times. I do appreciate his focused attention on details; as I have learned later on it’s very important in the world of seizures; but I was thirsty for some answers too, which I couldn’t get until now.
The good thing was that Nemer’s seizures were neither occurring in clusters (every 3 or 5 minutes), nor long ones ( one seizure lasting more than five minutes), meaning he didn’t require any emergency seizure medication. But having a sudden breakthrough of six to seven seizures a day after being seizure free was a concern. And the main question was : what causes this breakthrough?
Everything was happening in a good matter of time. In few hours we were moved up to 5C (Neurology floor). By the time we settled in the room Nemer was resting and sleeping.
It is a friendly environment and everyone ; nurses, doctors, and receptionists were sharing lots of smiles and welling to help. The room we were given was neat and fairly comfortable for one parent and the sick child . My husband and I were actually impressed with the good service of the health system there. But of course it wasn’t home and we were worried and anxious so we both slept the last few hours of that night on chairs.
Nurses never stopped coming into the room. They come in check Nemer’s blood pressure, heart rate and temperature, throw us a smile and a : “you guys need anything?” then leave. After almost two months in the hospital I kinda got used to it being part of my daily routine and eventually liked the idea of constantly having somebody take care of Nemer and ME “in a way” after being home alone most of the day doing all the work and the worrying.
At 7 am a different fellow resident neurologist was in our room. He didn’t ask so many questions, thank God. He discussed with us “the plan”, which was increasing Clobazam, the anti-seizure medication that Nemer was already on, and doing an overnight EEG; “a test that measures and records the electrical activity of the brain to detect seizure activity”.
Wow, I am laughing at myself right now remembering having butterflies in my stomach when I heard the words “increasing his medication”. I have always been very reluctant and cautious when it came to giving Nemer medications, let alone anti-seizure medications with all their serious side effects.
The EEG test showed that Nemer has focal seizure with generalized seizure. I knew Nemer was having seizures since eight months old. Doctor after doctor didn’t believe me. He has had five EEG tests before, and this was the first one to diagnose him with Epilepsy.
For those doctors at SickKids it makes alot of sense. Since Nemer’s last MRI diagnosed him with Polymicrogyria (PMG); suffering from epilepsy is one of the prognosis.
Increasing Clobazam did not help with your seizure control. They stayed at the same frequency and aggressiveness. So within three days Doctors have decided to introduce a new medication called Keppra, also know as Levetiracetam. They said and I’ve read before approving it that it’s one of “the safest anticonvulsant medications”.
We were discharged from the hospital on Saturday December 10th with a plan of staying on the increased dosage of Clobazam and increasing Keppra on a weekly basis until reaching the maximum dosage.
Seizures were not completely controlled, but we drove home that night under the assumption that medication will take time to have its complete effect.