A few facts – Epilepsy is a common condition that affects approximately one in 103 people. It is usually diagnosed in childhood and in people over the age of 65, but it can affect anyone.  Jared did not develop this condition until he was 18, and the first one he had went on for over 2 hours and he was put into an induced coma.

The only visible symptom of epilepsy is recurrent seizures, and these are caused by too much electrical activity in groups of neurons in the brain. How a person behaves during a seizure will depend upon the area of their brain that is affected.

There are two main types of seizure – generalised and focal.   Generalised seizures involve large areas on both sides of the brain, whilst focal seizures affect a specific region. www.epilepsyresearch.org.uk  www.epilepsysociety.org.uk

Jared has to cope with many things in his life, living with Fragile X Syndrome, Anxiety disorder, Autism and Epilepsy but this does not stop him from living life to the full.

These past few weeks have been particularly challenging as Jared has had two spells in hospital.  The first, 4 weeks ago when he had what is called cluster seizures, (having a number of seizures within a few hours).  Unfortunately when he arrived at the hospital he was very poorly as he also had a very bad chest infection and they also discovered he had a liver infection too.  However we can still find a funny moment even when we are extremely worried, as Jared was asked how much alcohol he drank because of his liver infection!!  The most Jared has ever had to drink is a very weak Pimms nothing else…..NADA! 

Four days in hospital is a long time in Jared’s life as he hates being there.  The constant requirement to tell everyone who is looking after him that he has special needs and how they manage this can be exhausting.  He does carry something called a personal passport which details everything about him, his likes, dislikes, his disabilities, and what drugs he takes on a daily basis.  Jared is extremely fortunate that he lives in a house with 24 hour care and therefore has one of his care team staying with him during his time in hospital.

Many years ago one spell in hospital resulted in me making a formal complaint.  The nurse who was looking after him refused to give him his drugs, why I asked, well he might hit me?!  Why the hell would you think that?  Jared is the sweetest, kindest man you will ever meet.  Yes he ‘fires’ everyone in hospital but that is his way of saying he does not want to be there, but has he ever lashed out, no.  I can appreciate that some adults with special needs have mental health issues as well and explaining to an adult who is also non-verbal can be challenging, but please do not tar all adults with disabilities with the same label.

Thankfully hospitals have come a long way in managing and caring for adults with disabilities and I am thankful that we have the NHS who on the whole provide a wonderful service whilst staying in hospital.

So this week unfortunately Jared had another spate of cluster seizures during a 24 hour period, 5 in total and one lasting over 12 minutes.  Being rushed into hospital at midnight and then receiving a call to say where he is, is frightening as you debate with yourself whether you should make a 20 mile journey and be with him and then the guilt sets in.  I know he had someone with him, I know they love him and want to make sure he is okay but I did beat myself up over this and continue to do so.  Thankfully, after running tests and all coming back negative, Jared was allowed home the following evening.  They have now upped his drugs and I think I can hear him rattling as he is now taking 7 a day, but he never complains, he is always smiling, and continues to pull Dave’s leg about the footie.

I think my anxieties from Jared having epilepsy stem from his sister Alexandra also having this, and which eventually killed her. Jared is prone to having seizures during the night when he is asleep and this gives me nightmares. I know he has a monitor in his room but I always have that ‘what if’ moment and it never leaves you.

I do want to say a massive thank you to Jared’s care providers http://www.cavendishcare.com a wonderful company who provide excellent care with a family feel in each house.  Jared has an exceptional life at his ‘other home’ living with three young men and the care team who ensure that all the boys have their days filled with activities, fab holidays and great days out.

Today its Saturday and just 36 hours after Jared went through hell, he is now chilling and waiting for the rugby to come on. So happy weekend everyone.

http://www.fragilex.org.uk  |  http://www.autism.org.uk  |  http://www.mencap.org.uk