Recently the Dude has had a fantastic time where his seizures are concerned – they’ve been almost non-existent, something we never dared believe could happen.
He’s been happier, chattier, more interactive, and has been able to just enjoy being a typical 9 year old for once.
The problem however is this; Sam doesn’t have ‘typical’ epilepsy.
Sam’s is deemed intractable – medications, the ketogenic diet and a vagus nerve stimulator have all failed to stop the seizures.
They have all helped, and our current good run is a large part thanks to excellent management of his health by his neurologist and palliative care consultant.
He is sleeping better so is less tired (a major seizure trigger); now he is off artificial formula his digestive tract is functioning better, he isn’t in discomfort and is able to enjoy his day much more.
Likewise, he is on a combination of medications that are all kept to as low a dose as possible to effectively manage his seizures etc., while reducing the impact of side effects.
He is one complex little chap.
However, with intractable epilepsy you know that every good run will eventually end, and the seizures will increase again.
Let me be honest. Its brutally hard to enjoy the moment and the good times when you know the bad times WILL return.
And with them, the risk that you could lose your child increases exponentially.
Epilepsy is a nasty little beast.
The seizures can be insidious, barely visible to the outside world but causing havoc in the brain.
Or they can be sudden, aggressive and powerful, stopping breathing in a moment but passing within seconds.
The very worst ones are powerful but long, and for those that don’t stop on their own we have equally dangerous, potent rescue medication to administer; medication that itself could kill our son.
It is not an easy thing for anyone to live with, especially not a 9 year old child.
We have seen the seizures changing again over the last few weeks.
However, we’re optimistic that with the excellent management of his various conditions he has currently, things will stay more-or-less stable for a while yet.