The uncharted waters of infant epilepsy

We all want to make sure nothing ever bad happens to our kids, but epilepsy is totally beyond the bubble of protection parents can make.My daughter, Alma, was just three months old when she had her first seizure and I had never been that scared in my entire life. What I didn’t even consider at the time was that was just the first of seventeen she would have that year alone. Some would escalate so badly that she would stop breathing, her impossibly tiny body turning blue. Most of them would last for over half an hour and we would go to the emergency room to get medication that would force them to stop.Now that she’s just two weeks away from turning three, Alma has taught our family an enormous amount when it comes to taking things for granted. Today she’s a hilarious, exhausting, beautiful toddler that is furious at me when I don’t let her drink the dog’s water. Her seizures are pretty well controlled now, but her first two years were a very different story.Watching your baby in physical distress and not being able to do anything at all about it is literal torture. And on top of the chaos, we came up against so many barriers to access the care she desperately needed.There’s limited availability of medications specifically tailored to manage severe forms of infantile epilepsy, so we quickly joined the chorus of families calling for greater access to medications for children like Alma. Currently, there are six anti-epileptic drugs (AEDs) available on the PBS (Pharmaceutical Benefits Scheme) without prescribing restrictions. Other PBS-listed medicines for epilepsy are limited for use in certain clinical circumstances.In March this year, the medications Alma needs became available for 60-day prescriptions; it will be an absolute game-changer in both the cost and time constraints associated with frequent visits to the chemist and GP.One of the things I’m really proud of – that Alma has given us – is our commitment to advocating for accessible and equitable care for all people with epilepsy, regardless of age or circumstance. Every child deserves the chance to live a life free from the grip of seizures, and it is our collective responsibility to ensure that no family is left behind.We know that we’re in the lucky group, my husband and I both have stable jobs that have flexibility for care built in, and Alma’s health is pretty stable now, but it’s something we have to constantly think about. Vacations are planned around proximity to a good hospital, Alma won’t be able to go to the same school as her two big brothers, there’s been a lot of frustration navigating bureaucratic hurdles in pursuit of the right treatment.While epilepsy is usually hereditary, neither my husband Mark or I had any experience of it before our baby girl was born. We’ve now come to believe that Mark’s mother — who died when he was very young – potentially also had epilepsy, but it’s wild that it would skip a generation. Like nearly everything about this journey, it makes no sense.We get through with the mindset that while epilepsy may be a formidable foe, it is not insurmountable. We talk about it openly and honestly with our two older boys and Alma. She doesn’t really get that she’s any different to other kids, but she also thinks that her aunty lives in the fridge so we’re not too worried about her comprehension of the situation just yet.We’ve also found some amazing groups online through Health Direct and Epilepsy Action Australia and now have two Whatsapp groups with other parents with similar struggles - who would have guessed that there are actually funny memes about epilepsy? Definitely not me, but there are.If I was going to give anyone with a newly diagnosed baby advice it would probably just be a good routine will save everyone a lot of stress, especially when it comes to bedtimes. Sleep deprivation and exhaustion is Alma’s number one trigger so we are super strict about naps and bedtime.Alma’s neurologist has a lot of hope that she may actually grow out of seizures all together eventually, but we’ve made a conscious decision to just leave that up to the future. Her epilepsy has no bearing on how much we love her, she’s the absolute light of our lives. But I will never give in to her about the dog’s water bowl. Source: bodyandsoul.com.au, Hannah Levin