A year has just passed since I sat in a hospital cubicle as a doctor came in to confirm my worst fears. Our latest battle we were faced with was a diagnosis of infantile spasms. A battle that back then, I couldn’t have predicted the ferocity of. A battle that would be so resistant to the treatment that works so well for the majority of those affected, Jaxon would later be dealing with over 200 seizures a day.
He never does things the easy way.
Initially I’d hoped the treatment offered would completely eliminate all signs of epilepsy and we could go back to how things were. The small steps in the right direction, the progress forward, the tiny glimmers of hope as we watched and wondered how Jaxon would develop after a devastating brain injury at birth left the doctors telling us that he would be so severely affected his life would be full of uncertainty, could return. At first it did. But it was only a few weeks before, shortly after Jaxon’s gastrostomy surgery, I sat in a hospital cubicle crying once again because I knew what I was seeing. I didn’t need an EEG to confirm what I already knew.
Still, I begged for a repeat EEG to be carried out. A neurologist came to speak with us. I told him simply that I believed Jaxon’s seizures were back with a vengeance. An EEG was requested and just days later my fears were confirmed. His medication was increased and once again, all we could do was wait and see. The story of my life.
The improvements were barely noticeable. So once again the medication was nudged up to the highest dose. Still no change. Each time I’d hope for a miracle, each time I was left entirely frustrated and disappointed. There was little I could do but try to remain hopeful.
Then less than two weeks after our discharge from a 13-week hospital admission epilepsy struck again. In the form of a tonic clonic seizure. I struggled to keep my composure as Jaxon’s body shook at 2am. My fingers barely able to unlock my phone to dial for an ambulance. My voice was noticeably shaky as I tried to explain to the operator what I could see happening whilst also trying to cram in a condensed version of Jaxon’s back story. The ambulance came, rescue medication was given, and we were taken to hospital. I showed the doctors the videos, but they couldn’t be sure if it was a seizure or dystonia. They said if it was a seizure it was likely focal rather than a tonic clinic.
We were sent home with a new medication to start. I was terrified and hoped I’d never have to deal with anything like that again.
But I did. Less than three months later the same thing happened. It was just me and Jaxon. Trying to keep my hand steady enough to dial 999, I put the operator on loudspeaker as I told them that my son was having a seizure. I knew this time what I was seeing. This wasn’t dystonia. He was seizing. His eyes were deviating upwards, his lips were twitching, he wasn’t responsive. I managed to capture some of the episode on video.
I was crying as I opened the door to the paramedics. They rushed in and gave rectal diazepam. He became quite tonic but seemed to come out of the seizure. Then he started again. We were taken to resus at hospital where they tried to stabilise him. Nothing was working. He’d been given two lots of diazepam and paraldehyde. The doctors told me he was still seizing and given how unstable his veins are due to how much they’ve been used, they needed to gain IO access. Intraosseous is where they gain access to give medication directly into the bone by drilling. I’ve seen some horrendous things happen to Jaxon in his short life, things I wouldn’t wish on my worst enemy but watching a doctor drill into my one-year olds knee is right up there.
I cried as they did it and I cry as I think about it now. As they gained the access, I pushed my way through the team of doctors, I could see he was no longer in a seizure. He was tonic yes, but that’s not all too uncommon for Jaxon, especially when he’s in pain. I begged them to listen to me as through the tears I tried to explain that Jaxon was no longer seizing. One of the nurses quietened the rest of the team as I explained he has increased tone, and this was normal. The room suddenly seemed calmer and there were discussions of us being moved to a ward.
A few days later we were sent home with a plan for rescue medication if it ever happened again. Another repeat EEG was also ordered to try and determine what was going on.
Just a couple of weeks later the EEG was carried out. I recognised the person doing it from our first EEG. She told me the first time around she couldn’t tell me anything about what she was seeing, and I didn’t question her. This time around I asked her if she could at least confirm if hypsarrhythmia (the chaotic brainwave pattern associated with infantile spasms) was still present. I told her I’d pretty much ate, slept and breathed IS for the previous six months and that was all I wanted to know. Maybe she sensed the desperation in my voice or maybe she felt sorry for me, I don’t know. But within 30 seconds of the test beginning, she looked at me with real sorrow as she confirmed it was still there. I nodded, held back the tears as I gripped Jaxon so tightly, wishing somebody had the answers to help him.
In the new year we weaned off one medication that clearly wasn’t working and started a new one to try once again to bring his seizures under control. This too was unsuccessful. We were awaiting the go ahead to start the ketogenic diet, but Jaxon’s consultant felt it was best we wait until his reflux is fully controlled.
A few weeks ago, we started yet another new medication. His fourth seizure medication we would try. The improvements so far have been the best I’ve seen. I’m reluctant to become too hopeful as I’ve seen an initial improvement before with new medications followed by a swift punch to the gut as weeks later the seizures return with full force.
Epilepsy is heart-breaking.
It takes away so much, which is another difficult and devastating blow when you feel like you’ve already been robbed of so much. There’s nothing worse than watching your child have clusters of seizures day in, day out and feel utterly powerless to stop it.
I hope with every part of me that one day there will be a cure for all types of epilepsy, even the most intractable types. Until then, I’ll hold onto what little hope I have left that the next treatment we try will be the miracle we’ve been waiting so long for.