It takes a lot to make me cry, but tonight I am holding back the tears. It’s bed time, or as we like to call it “med time”. Our nine-year-old son is prescribed a small dose of anti-epilepsy medication to keep his seizures at bay; he also takes meds for a few others bits and bobs. I am seriously grateful after trying multiple epilepsy drug combos that he can now get by on just the one AED (anti-epileptic drug).
The drugs have been a wild ride for him and our family. The first AED made him so drowsy that by nine in the morning he would be ready for a nap. He was so doped up like some hard-core stoner.
The next med didn’t seem to do much of anything and after increasing the dose to a “therapeutic level” he was switched to another AED. It was the most horrid of meds that took our son away from us. He became aggressive, violent and whether purposely or not a real threat to his own life. While our little boy’s life and our lives were being emotionally destroyed, this AED was technically doing its job. It gave our son his first clean EEG (electroencephalogram) since he was diagnosed with epilepsy. An EEG is a test used to detect abnormalities related to electrical activity of the brain.
While it was a big neuro thumbs-up for the EEG, it didn’t feel like we were winning at all. This AED was destroying him and us. Two more AEDs were prescribed for our son whilst trying to find that perfect med level combo. It never happened. So we, with the support of his neurologist, began weaning all three AEDs.
We chose possible catastrophic seizures over living constantly with a depressed and angry child. It was an incredibly tough decision to make, but we made that call. Allowing a child living with epilepsy to go drug free is a massive call, but we genuinely thought we could lose him either way. At least drug free, we had a fighting chance. We both refreshed our resuscitation skills. We brought in a new oxygen bottle and were prescribed extra narcotic recovery drugs should our son’s seizures return.
Slowly but surely as the AEDs were removed from his system, our loveable, funny and smart boy returned.
We were on constant watch and thankfully apart from a few “minor seizures”, our son had no status seizures. These are the long, uncontrollable and unmanageable seizures that kill. Some of our son’s seizures have lasted more than an hour and have failed to respond to multiple doses of recovery drugs. Words can’t describe just how powerless I’ve felt when there are multiple doctors and nurses standing around him and you can clearly see the distress on their faces. The hopelessness that there is nothing I can do to stop his seizures is crushing, the best I can do is hold his hand and hope he survives.
Our son was drug free for about six months, he was physically and emotionally thriving, but an overnight EEG showed abnormal brain activity again. His neurologist suggested we try a small dose of another AED. Ironically this medication is notorious for causing behavioural problems. The prescription was posted out. The decision left to us.
We filled the script and slowly increased his medication. This time around things were different; he was a little older and was now using a CPAP machine to help him breathe at night. So he was getting a good night’s sleep and stopping one of his main seizure triggers – fatigue.
It was working. The only really down side, was our little man doesn’t seem to physically grow much at all while taking AEDs. He is smallest child in his school year. He needed to have his school pants hemmed because they were way too long. The tailor asked our son whether he was starting school this year. Our son was horrified and I politely explained our son was turning 10. The tailor was shocked!
I am guilty too, my son started a new school this year and at home time I saw him talking with a group of boys. When he came over to me I asked him why he was playing with the older boys. Very annoyed, he told me they were his classmates. “Oh my they’re giants,” I jokingly replied. I hadn’t realised being small was such a big issue for him, but it is.
Our son has been out of sorts for the past week, I spoke to my fellow Ragdoll Mumma about some of his “suspicious” behaviour. He was sporting large and black bruises on his legs from a number of falls. He has been clumsy, tired and hyperemotional. Things just weren’t right. I checked his medication webster-pak. To my alarm, all the tablet compartments were still full.
Up until now, I’ve trusted him to take his meds, before bedtime I would remind him and he’d trot off to the kitchen, grab a drink and take them. I calmly asked him whether he had stopped taking his meds. He told me he had because he wanted to grow. Another little piece of my heart breaks. I explain to him he could have seizures again if he doesn’t take his medication. He doesn’t seem to care. He just wants to be taller.
I am now “Monitor Mum” who stands next to him every night and checks his mouth to ensure he’s swallowed his medication. This shouldn’t be the job of a mum. Epilepsy you arse! This is not fair.
I try to reassure him (and myself) that it will all be okay. I’ve booked him into our family doctor, hoping he might respond more to her than me. In the meantime, our son is on the crazy medication ride as it slowly stabilises in his system.
Ragdoll Mumma Kelly.