It was little over one year ago that Lil Z had her first seizure. Since then we’ve had regular trips to the hospital emergency department – “going in red” in an ambulance and more leisurely postictal trips.
I remember that first seizure vividly. Its one of those traumatic experiences that will stay with me for the rest of my life. I was working (from home) and the nanny was looking after Lil Z. She had been sleepy all day – she’d barely been awake all morning. At lunchtime, the nanny decided to wake her up to eat and as she lifted Lil Z out of the bouncy chair, she began to act strangely. The nanny brought her to me and I made the decision to call an ambulance. Although I remember the icy fear the crept up on me when I told her to dial 000, I’m not sure that either of us even thought the word “seizure” until we were talking to emergency services.
The paramedics arrived blessedly quickly and administered oxygen and Midazolam. She seemed to come out of the seizure but didn’t regain consciousness. More paramedics arrived – there were no 4 or 5 at our house and two ambulances. Finally we were loaded into an ambulance and headed off for the Royal Children’s Hospital with lights and sirens on.
As we arrived at the RCH, Lil Z had another seizure. She was immediately taken into the “resus room”. QB was there too, since the nanny had phoned him before we’d left home. I remember feeling completely helpless and useless, watching them work on Lil Z. At one point, there were 18 doctors and nurses around the bed. One doctor stood beside QB and me, explaining what was happening and asking us Lil Z’s medical history. She was only 6 months old and it had only been the week before that a paediatrician had declared there was “something wrong” with her – suggesting it might be cerebral palsy. We were in shock.
At one point a senior doctor took QB and me outside the resus room to explain that Lil Z was experiencing something called status epilepticus – a prolonged seizure – that it was serious and that they were giving her drugs to stop the seizure. Shortly after we went back into the room, Lil Z stopped breathing and then started again on her own. Then she stopped breathing again. And started again. The doctors decided it was time to put her on a ventilator. I left the room. QB stayed, but later said that he wished he hadn’t watched, as it was not a gentle procedure.
At last she was stable and we were taken upstairs for a CT scan and then to the PICU (paediatric intensive care unit). We stayed in the PICU for 3 days and then another 2 on the ward before Lil Z was sent home.
Because Lil Z had a fever when the paramedics arrived and later tested positive for a virus and because QB had fever convulsions as a child, the doctors declared that the seizure was most likely a fever convulsion. We were sent home (on my birthday) hopeful that we would never have to go through it all again. But I think even then we both knew in our hearts that it wasn’t a one-off thing.
And then it happened again a few weeks later (this time coinciding with QB’s birthday). And a few weeks after that. By the third seizure, the doctors decided to put her on anti-seizure medication. But Lil Z still has seizures. We can go weeks or even months without one, hitting what QB and I call the “sweet spot” with her medication. Then something will happen to trigger a cluster of seizures. At the moment I feel like we are far from the sweet spot as she has had a seizure a week for the past 2 months.
After a year of coping with her seizures, they still scare me. They still upset me. Now that we are old hands at administering the rescue meds and monitoring her postictal state, there is a growing attitude amongst doctors that we don’t need to come into the Emergency Department as frequently. Of course, no one would ever question our decision to go in, but there increasingly the suggestion that if we are able to manage at home, we should do so.
This is true and while it isn’t a bad thing necessarily (constant trips into the hospital are exhausting, time-consuming, stressful and disruptive), it also makes me angry. My baby is having a seizure. A seizure. She is having abnormal brain activity and losing consciousness. How can this not be a red light emergency each time it happens?
But trips to the hospital are nothing compared with all the other grief the seizures have caused. Lil Z has always gone through periods of being extremely unsettled – often screaming for hours on end. I am now fairly sure that this is (and has always been) the result of some sort of seizure activity. And it continues. When she is not in the “sweet spot” she sleeps poorly, eats badly and is so unhappy that she is unable to do any physio or occupational therapy. She smiles and chats less and screams and cries more. In short, she is miserable. And there is nothing we can do about it until she has more seizures and the doctors adjust her medication.
And then there is the feeling of constantly being on edge. Even in the middle of writing this, I’ve quickly tiptoed into Lil Z’s bedroom to check she is OK because she was making odd sounds in her sleep. The other night I was away for work and QB woke to a strange noise. He thought it was Lil Z having a seizure and sprang out of bed and rushed into the hall, only to discover the noise was actually the cat having hairball issues. We have to be constantly vigilant and to make sure that anyone who cares for her is not only vigilant, but able to follow her seizure protocol, should she have one when we are away.
There are a lot of children with seizures worse than Lil Z. There are children who have tens or even hundreds of seizures each day, those who stop breathing during their seizures, those who convulse and unintentionally harm themselves. So I know that I should be grateful that Lil Z’s are infrequent. But knowing other children suffer worse than Lil Z is no consolation. Seizures are cruel and horrible and Lil Z deserves a far better life, and so do the other children who suffer from them. And that is why I hate seizures.