Joshua did not have any seizures yesterday so that makes today ‘lucky for some,day 13!’ between seizures, which is a record since his seizures started to become a problem when he was four years old. I had a phone call yesterday from the epilepsy nurse at hospital, pursuing where we were up to with the VNS – which is an electrical treatment for seizures which involves an appliance being fitted to the vagus nerve in the neck, rather like a pacemaker, which can help with seizure control:The vagus nerve carries messages between the body and the brain. During VNS therapy, a generator is programmed to send impulses to the vagus nerve at regular intervals, all day, every day. This is to stop excessive electrical activity in the brain that causes seizures.
It was suggested to us in the spring and we had to wait a couple of months over the summer for Great Ormond Street hospital surgeon to confirm that Joshua’s brain surgery in 2014 did not preclude VNS therapy as an option. They replied in September to say that it was acceptable and this was the first follow up that we have had since then. We fixed up an appointment to visit the nurse during Christmas week to ask all of our questions and to learn more about the therapy and its chances of success in Joshua’s case.
She explained that as the VNS therapy costs the NHS £18,000 they have to justify to the commissioner that we are a worthy case by showing how many anti eplieptic drugs we have tried already and keeping a seizure diary both before and after the treatment. I explained that I had been keeping a seizure diary everyday since June anyway, so that we had data to compare already.
Although nobody would put their son through surgery lightly again, this treatment could be preferable to being on a cocktail of anti-epileptic drugs for the rest of his life, as they are in part responsible for his excessive sleepiness and have other side effects which mean that long term use could be damaging to his kidneys and other organs. I will go along to that appointment with an open mind and a list of questions in order to assess its suitability in our case. I know it is not an instant cure to seizures, like his hemispherectomy might have been, rather it is a longer term treatment as the level of electrical impulses have to be adjusted every fortnight for around six months before they reach a ‘therapeutic level’ so that would demand a commitment of disruptive appointments, in the hope of eventual gain.
Each of these treatments – brain surgery, ketogenic diet, VNS and drugs to some extent – require a leap of faith. Each time we have embarked on a new journey, we are filled with hope plus trepidation, and each time they have failed to fulfill the promise, then those hopes lie crushed on the floor and we have had to pick oursleves up again and carry on. As I told the hand surgeon a month or so ago, we are ‘used to disappointment’, which is a sad , but true, thing to admit. As an optimist the disappointment takes a while to adjust to, whereas a pessimist has his doubts confirmed and it makes it easier to reject other options that arise in the future. But I think all we can do is to continue searching for that magic wand and believing that the solution exists for our son that will help him to be rid of the demon epliepsy.