One of the most difficult, soul destroying, stressful parts of having a child with uncontrollable epilepsy is the knowledge that it is uncontrollable.
Yet at each neuro appointment we go through the same routine of listing off the seizure types, how many per day, how long, whether rescue meds were needed or not, etc.
Inevitably the neuro in question will look through the notes at the multiple medications already tried (and failed), before consulting the 'Bible according to Pharmacy', (the British National Formulary, or BNF for short).
This thick paperback tome contains within it the details of all the medications, combinations, side effects and contraindications that medical/pharmaceutical science knows about – ok, that’s a gross generalisation and not exactly accurate, but it’s how I view it.
After several moments of scanning pages of drugs, the neuro will possibly suggest changing one medication out in favour of another.
Sometimes it’s just a case of 'we haven’t tried this exact combination previously so let’s give it a go', other times it’s a drug we’ve used in the past with varying levels of success.
Other times it’s as simple as altering the dose of the drugs he’s already taking because he’s grown and gained weight.
No matter what is decided upon, each tweak ignites a tiny spark of hope in us as parents that this time will be different.
Sam is a swine for having honeymoon periods on medication – a new med or a dose change usually heralds a period of significant improvement, just enough to get us really hopeful, before the improvement wanes and the seizures kick back in fully.
It is utterly, totally draining, for all of us.
So when this summer it was suggested to reintroduce a drug he’s taken twice in the past we weren’t overly optimistic of any actual improvement.
However in five years of dealing with epilepsy as a family, we’ve learnt that an improvement doesn’t need to mean a reduction in seizures.
That medication added into the mix a few weeks ago is now at the level his neurologist wants to hold it at for now… his seizures are still coming daily, but seem far less severe.
He’s trying to chat far more, and is attempting to form words (and succeeding too).
He’s happier, that gloriously stunning smile is once again in residence. I’ve got my little boy back.
We never know how long any positive changes will last so for now we’re just allowing ourselves some time to wallow in the knowledge that epilepsy will not win x
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