Uuugh. Just when we thought we knew what the Dude’s pattern of seizures looked like, puberty has joined the party, turned all the tables over and thrown everything fragile out of the window.
It has been a relatively stable few years, seizure wise, for our boy. While we are (painfully) aware that we will never be able to stop the seizures fully, for the past 3 years or so a combination of medication and his VNS, together with dietary tweaks have kept him on a fairly even keel; since his spinal surgery last year however those pesky hormones are wreaking utter havoc.
Whether a combination of pain, hormones, teeth cutting through the gum (an issue for kiddos who aren’t orally fed being a delay in adult teeth coming in), the end result is seizure chaos. While it’s causing us to keep a closer eye on things, at school the repercussions are enormous.
Any epilepsy parent will tell you, probably through gritted teeth while grimacing, that care plans are something of a nightmare. Some are simple – giving paracetamol for pain for instance – while others are nothing short of the Devil’s own paperwork. Seizure care plans for a young man with multiple seizure types that present in ways staff haven’t seen before? You get the idea.
Recently, things have come to a head.
Surgery has meant he has better mobility of his head and limbs. Better mobility means he is moving about more. Moving about more has meant a lot of movements being misidentified as seizure-related. The care plans that were fine pre-puberty/pre-surgery and not fine any longer and need amending.
Like everything else in the world of SEN however, this is not a simple job. Due to safety concerns, the poor boy cannot attend school until the seizure care plan is amended; this will prevent him receiving too much rescue medication due to the care plan not being accurate, but also means he is missing his friends.
In order to change it, we need to liase with his epilepsy nurse. And the school nurse. AND his neurologist. There is not enough hair dye IN EUROPE to cover the amount of white hairs I am developing.
We always knew puberty could be a tricky time for our boy; friends who have already navigated this stage of life with their young people have filled us in. But nothing prepares you for how quickly things can change.
I am definitely not ready for my baby to be a teenager, but I’m even less ready to ride the storm that is potentially coming. On a lighter note, it would appear his voice stating to break making him sound like a honking goose is one of the funniest things the Dude has ever heard…