It might be that your child has severe epilepsy and disabilities, but no diagnosis. Keep pushing, keep exploring the different options, and rarer conditions like Dravet and CDKL5. But more and more children are being diagnosed with CDKL5 as awareness spreads. We can all do something to share and make others aware of these condtions
PulseGuard successfully alerted us to every one of Tom's seizures within the first two years of trials. Whilst talking to Tom's consultants, other Epilepsy professionals and parents, it was very clear that a lot of people were interested in having an alarm system that seemed to be as accurate as it was proving, but this would mean throwing everything we had into it.
Anything which makes epilepsy slightly more mainstream is to be welcomed so that kids can feel like they aren't so weird after all. And why the bags River Island pushed out in conjunction with Epilepsy Action should be a good thing. 'Seize the day' they said - what a lark! Look at us eppys, nature's fruit cakes, laughing at ourselves and soldiering on. Look at us eppys, nature's fruit cakes, laughing at ourselves and soldiering on. What a hoot! We even shop in the High Street despite ourselves. But strangely enough, they aren't right. There is something odd about them.
This month I set off to row 3,600 miles across the Indian Ocean. In history, there have only been four successful attempts by a rowing pair. But the question I am asked most often is, 'why'? The answer is, 'because I can'! But of course like most things in life, it's not quite as simple as that. Let me explain...