Wesley’s Story

He’ll Grow Out Of Whatever ‘It’ is

Before Wesley was diagnosed as having RAS neither of us had heard of the condition. Wesley’s fi rst seizure occurred when he was caught in the face by a neck chain swung around by our daughter Jasmine – then aged 4. Wesley became distressed, not able to breathe, his whole body stiffened contorted and shook, his eyes rolled up and his face turned grey and looked ‘horror struck’. He then passed out and started breathing again before regaining consciousness a few moments later. Wesley was then really miserable and obviously felt unwell. The incident was very scary - at one point I thought he might die. Afterwards we made sense of the fi t as an episode of ‘breath holding’, which had happened to Jasmine a couple of times and which Eleanore, my partner had been told that she had done as a child. After Wesley had had a number of fi ts, we went to the doctor and he was referred to a consultant paediatrician, who stated only that the seizures were not dangerous and that Wesley would probably “grow out of whatever ‘it’ was!” Six weeks later we ended up at hospital when Wesley had what appeared to be two huge and prolonged convulsions, followed by long periods of unconsciousness. These fi ts were much more extreme than previously, and we knew that something very different from the earlier episodes had taken place – it was extremely anxiety provoking. Wesley stayed in hospital overnight and was diagnosed as having RAS. A STARS leafl et was handed to us and this was the start of a process of understanding what RAS involved and what Wesley was experiencing. We had received little in the way of support from either consultant, other than the increasingly familiar ‘reassurance’ that Wesley was ‘not in danger and would probably grow out of it’. Life with two young children is demanding, but RAS has added signifi cantly to the stresses, strains and fatigue of everyday life within our household – at times we have been desperate and not coped. There have been fun times too, but over the last year its been a big challenge at times to be relaxed enough to experience these. We have tried to make the point in the STARS leafl et about not ‘wrapping up in cotton wool’ central to how we do things with Wesley. But we have gradually come to terms that sometimes we could not go to places, nor undertake the activities that we would usually have done, in case Wesley had a fi t in a situation that was very diffi cult to manage and so, too stressful. Wesley can have fi t after fi t, in situations where he is not able to recover properly by having a sleep. This sleep recovery usually means being in a calm, quiet place, being held by one of us. When he has multiple fi ts it is highly distressing and one of our goals is to try to avoid this happening. At times it has felt nerve-wrecking. RAS arrived at a time when Jasmine was about to start school – a process that has placed considerable demands on her. She has required a lot of support, which at times has proved diffi cult. Jasmine becoming distressed at the school door, not wanting to be left, and Wesley having a fi t at the same time has happened several times. On occasions Jasmine’s life at home is signifi cantly disrupted. When one of us is alone with both children and Wesley has a fi t, she has to fi t in completely with the demands of the situation – not easy for a 5 year old. Jasmine is pretty accepting of Wesley’s fi ts and she appears relaxed about things at home, but it may be that she feels a high degree of responsibility and high anxiety, when Wesley has a fi t in a situation where another adult is looking after them. It may also be that our stress and anxiety, heightened by RAS and its impact, have contributed to her anger/distress outbursts – not at