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Just a Thought - With Hindsight!

Yes, hindsight is a wonderful thing but I wonder just how many reading this, who know what I am talking about, will realise that I just might be right. Perhaps the real question is, how many will admit that I could actually be right. I have always kept an open mind about treatments for severe and complex needs caused by epilepsy but others have different motivations and cost prohibits a lot and brings on prejudice. 

I am talking about vagal nerve stimulus (VNS). I have been painstakingly slow to realise the immense benefit of VNS for our 16 year old son Muir, despite the fact that he has benefitted from this on going therapy for some 12 years now. VNS is manufactured and supplied by Cyberonics, a 25 year old US company that also has a head quarters in Europe. VNS comprises a generator attached to the vagal nerve by a wire, a bit like a pacemaker, the generator is implanted under the skin beneath the arm and sends a pulse to the vagal nerve every five minutes. Its role is to remind the vagal nerve to do its job as the vagal nerve contributes to the control of electrical activity in the brain. It is, in essence, a therapy in the treatment of epilepsy but the therapeutic benefit of VNS takes time - and therein lies the problem. It takes time to measure the results, in fact so much time that we are never really sure of the benefit of VNS. An MRI scan is off the agenda too, VNS having a magnetic component (except in Kings College London, I believe, where such MRI scans are possible.)

So, we have consultants specialising in epilepsy, many of whom remain sceptical about the merits of VNS therapy. We also have the issue of cost - and VNS does not come without cost, in the UK some £20,000, including surgery. It is of course one of only 13 commissioned products that MUST be made available by the NHS to all patients if it is recommended by a consultant. No post code lottery here! But there is still the prejudice of the consultant to overcome, never mind the fear of the parent or the patient who invariably is not well enough informed about VNS to make a decision.

After 81/2 years of VNS therapy Muir suddenly went into status epilepticus with partial seizures. His condition prevailed for some months off and on before we realised that the wire had become disconnected from the generator and he was no longer receiving VNS therapy. He was scheduled for a replacement and very soon after, everything settled down again and we all had the evidence we needed regarding the benefit of VNS. Indeed, I have expounded the merits of VNS ever since and our consultant also has admitted that she too is convinced. It may not work for everyone but if it does work the resultant cost savings to the NHS are huge and the patients' quality of life is dramatically improved.

But this evidence is not nearly as amazing as what has been staring me in the face for some years and I have failed to notice - until now. Muir has Dravet Syndrome, one of the most devastating and severe forms of early onset epilepsy.  Its dramatic entrance into our lives was in keeping with the worst of Dravet Syndrome cases - numerous long periods of life threatening status epilepticus in his first year of life with hugely detrimental consequences thereafter in terms of developmental delay and regression. I was always a holistic mother and resisted cocktails of toxic anti - epileptic drugs, preferring to pursue VNS which I learnt about some 14 years ago in California whilst visiting relatives. Getting VNS for Muir was no easy feat - a story for another day, perhaps,  and yet today, despite the fact that he is profoundly damaged by this syndrome, remarkably he remains a speaking child who can walk, he is not incontinent and although he has autistic tendencies he can engage with the world.  This is most unlike the majority of Dravet Syndrome children I have met.

Increasingly, we also use a magnet that sends additional stimulus to the vagal nerve as required and we have found this to be most helpful in the management of behaviours and sleep disruption as well as underlying seizure activity and the management of occasional tonic clonic seizures.

It is the remarkable difference between Muir and other Dravet Syndrome children that is now so obvious to me that has convinced me of the real and lasting long term benefits of VNS as an on going therapy in profound epilepsy syndromes.  I made it our first line of treatment rather than our last. I preferred it to a cocktail of toxic drugs, albeit Muir is now on three drugs but drugs known to be effective in the management of his syndrome and he is on a very small dose.

The barrier to entry for VNS when we asked for it was prejudice and cost but I was determined and in the end I won. There by the grace of God goes Muir! 

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