Two Steps Forward and One Step Back

Although Muir has a severe form of epilepsy called Dravet Syndrome his epilepsy has been under control for over 18 months now. That said, we are left with a legacy of a life time of seizures and the most difficult part has just begun.

The cocktail of seizures, anti-convulsant medication and hormones is an explosive combination.  No one, including the doctors, understand the impact of this cocktail on growing children.  I have made huge un authorised and positive changes to Muir's medication but behavioural problems are a regular occurrence, as are sleepless nights. Extreme aggression, as well as convulsive tears, form the normal pattern of our life. There is literally no one to turn to.

Difficult epilepsy in children is a complex condition transcending health, education and welfare needs. Our consultants do their best for us but there is no back up from social services or educational psychology unless you scream and shout.  At best they might eventually agree to a section 23 assessment.  I asked for one of these in order to establish Muir's needs. It  took 13 months to get an assessment before a panel.  Then it was referred to another panel and another panel.  They declared the assessment as inadequate because Muir's view was not represented!

Muir is not capable of representing a view which was clear from the assessment.  I can only presume they didn't read it!

And so we go back to the drawing board.  Muir's case will be reviewed again at the end of October.  I will update you then. 

Ann Maxwell