Epilepsy and the affect on the family unit.

Extracts taken from a presentation given in La Baule Nantes France to an International meeting of Clinicians, Neurosurgeons and Neurologists by
Sandra Howard in July 1996

Epilepsy not only affects those who suffer from it, it affects the whole family unit. As parents we feel their pain and anguish of being made to feel different. We stand helplessly by while they suffer their seizures, wishing we could make them stop. We try to make them understand why they are excluded from certain activities and clubs, why they do not have the freedom to go out on their own. So we are there with words of re-assurance, a loving embrace and only the support a family can give. But at what cost?

My youngest son, although unintentionally, missed the attention he craved. He learnt to grow very quickly, accepting that our time and attention was more often given to his brother, necessitated by his daily seizures. Gareth found it hard to accept that his younger brother could do more than he could. He saw him go out to play freely and visit with his school friends. Having always attended a special school, where the children came from all over the city, he found it hard to make friends, as his school friends did not live locally. In his own words he just wanted to be normal, he felt it was unfair that he was the one to suffer, and suffer he did. On average he was experiencing between 10 and 15 major seizures on a bad day. He suffered lacerations to his head, which needed to be stitched because of the force with which his head hit the floor when he dropped. The varying degrees of mood swings caused by a variety of medications all added to the problems we had to face and cope with. We saw the pain in his eyes and wished we could make everything all right for him, so we gave of our time, he became our life. As a mother who wanted to be part of everyone's life in the family, I often felt divided and no longer an individual. I hoped to keep everyone happy but often only succeeded in annoying those I loved. I gave what I could but someone was often left feeling neglected.

The constant hospital in patient treatments, the visits back and forth, the strain of living ones life around another. Little or no help from other family members or friends, no help with respite care. We were beginning to feel like social outcasts. Years spent being changed from one Doctor to another because no one knew what to do next. No one interested in listening to the problems we as parents were facing. A doctor once told us when Gareth was about seven years old; that his social skills would never be above that of a three year old and his learning capabilities would never be much more than a five year old.

If we had believed that we would have probably given up then, but we always believed in his potential. But then our luck changed. We were transferred to a Doctor who not only had time for Gareth, but one who had time to listen to us as parents. One who seemed to understand what it was like to be the parent of a child with severe Epilepsy. To Doctor Chris Rittey of the Ryegate Centre of Sheffield Children's Hospital my family and I are eternally grateful. It is often only the parents of another Epileptic child that understand just what you are going through and how you feel. They understand only too well the pressure it puts upon ones marriage, your relationship with your other children, the feeling of being house bound. How it is to cope with the stares and comments from members of the public when you are out and your child suffers a seizure.

But what can we do?, our child has to go everywhere we go, he cannot be left. But what is the answer?
Where do we go from here?
What can we do?
Surgery is not an option, the medication is no longer effective, what's the next step, is this all we have? All the questions we as parents have asked. Then there's a light at the end of the tunnel, a new surgical procedure, The Vagus Nerve Stimulator. A ray of hope, surely we have nothing to loose and every thing to gain. But as yet not readily available on the National Health Service.

We had one of two options, accept it's not available or find a way to raise the money ourselves. And that's exactly what we set out to do. It was done through various fund raising events with the help of two friends, but it became apparent to us that there was others in the same situation and if could do it for one then perhaps we could do the same for others, and so the charity F.A.B.L.E (For A Better Life with Epilepsy) was launched, its name stood for every thing we believed in.

My life is now my own, my son has been given a quality of life we never thought he would experience, and he has the freedom to do the things he has always wanted to do. It is now twelve months since he had his operation, before the operation our hope was at least to reduce the number of seizures to a more manageable level, one a day would have been great, one a week would have been fantastic but for the last seven months he has not suffered a major seizure, in fact he has been virtually seizure free.

He is a totally different person, independent, confident and with an improved learning capability. He is now attending a special college, acquiring new skills and he is now making friends. None of this we believe would have been possible without the Vagus Nerve Stimulator. He now has a chance to go out in to the real world as an individual, standing on his own two feet. Life is better for all of us , we believe because of the Vagus Nerve Stimulator, we now have time to relax.

Our younger son is free of the pressure of feeling responsible for his older brother; he is a ten year old again. We have time to ourselves, a future to look forward to. Every parent wants the best for their child we were no different, fortunately for us the Vagus Nerve Stimulator gave us what medication alone could not do.