We have been left numb with the knowledge we have learned today.
Through our sons neurologist review, it was agreed that his Epileptic seizures are resistant to anti-epileptic drugs (AED). We knew this, after trying many different types and combinations without reduction of the seizures, we could see the lack of effectiveness.
What we needed to understand was the impact on the brain of the ongoing seizures, and the long term effect. To our surprise, we learned there is very little certainty in this area, though it is believed that Cognitive problems can develop as a result. More so in children, but also in adults. “Most cognitive complaints in adult patients are mental slowness, memory difficulties and attention deficits. In children, cognitive problems are more diffuse, responsible for language troubles, learning difficulties, poor academic outcome, behaviour problems and finally unfortunate socio-professional prognosis” we are told.
Our son has been exposed to these seizures since he was around 2 or 3 and so fits this definition completely, both child and adult. In itself, it raises questions around his Autism diagnosis and are many of his challenges as much to do with a cognitive decline due to Epilepsy caused brain damage as much as Autism? This may explain for example why the coping mechanisms and interventions are difficult to maintain and may not be fully effective.
Assuming this is correct and we find we are unable to find a way to stop his seizures, a continual decline of his cognitive ability is expected. We also had it confirmed that our son does fall within that group who are subject to sudden and unexplained death in Epilepsy (SUDEP) usually as a consequence of having a seizure that he just doesn’t recover from. An area that is known, but there is still not much understanding of. Life expectancy is shortened considerably and both these points we knew and have been battling to accept.
As for what next. Our son is being referred to a specialist centre for reassessment and potential options for us to consider. As AED’s are not having the ideal effect, it was suggested to us that Vagus nerve stimulation therapy may be an option. To be frank, we are appalled. It sounds like the electric shock treatment physicians used to administer many years ago. I’m not altogether happy with the current success rates either. It may be after reassessment, this is discounted anyway, but we will need convincing if we have to consider putting our son through further surgery with such low success rates. It would appear that any benefit, if achieved at all, could take over two years to realise.
It may well be that we have to accept that through all his complex issues, a decline in health is inevitable and all we can do is to stimulate him where and when we can, but expect an increasing amount of time just making him comfortable and safe.
Today is not a good day and though we hide our tears from our son, he does pick up on our sadness and wonders why, asking is it something he has done!
We now need a sunny day to go on a wheel-walk and forget for a while 🙂