My reply was, that ‘I catch him when he falls, comfort him when he cries, and pray for him while he sleeps …’
The question was intended to ensure I have an escape from my focus of care for our son. His new neurologist did listen to me. I told her about how he has deteriorated, she looked with interest at the seizure diary that I maintain and she offered some clear understanding about how a particular type of seizure is causing certain characteristics affecting him.
She looked back at EEG’s and MRI’s and the dozen or more anti-epileptic drugs he has tried over the years.
In conclusion she told me that, there was nothing more that can be done, other than trying to mix up the medication again and hope some combination brings him some easing to his torment. She did however say that it is clear our son is drug resistant.
I asked about Ketogenic Diets, I asked about CBD treatment, I asked about Vagus Nerve Stimulation therapy. “No”, “No”, “Only around 25% of the people treated by this clinic see partial improvement which is not high. In our son’s case, this is an option to try, but not recommended”
“Carry on as you are doing” is in truth, all I expected, and, all I received. “There is no more we can do” still ringing in my ears.
As I manoeuvred his wheelchair to leave, a tonic-clonic seizure gripped him and contorted his body so much, it was as rigid as the chair itself until he began to relax and come out of it. The clinic door shut firmly behind us as I was trying to comfort him.
“Come on son” I whispered into his ear. “lets get you home. We will deal with this together, and with the support and encouragement of a number of virtual friends who also care”
I sense that today is the first day of something different, what that something is, only time will tell.
