Tuesday, 20 March 2012

The Disability Diaries (The Life of J1) : Something I Am Thankful For (Supporting Young Epilepsy)

**Part of a Series of Posts Supporting Young Epilepsy (www.youngepilepsy.org.uk)**

**Will You Take The Purple Pledge on 26 March 2012?**

From when we brought J1 home from the Special Care Baby Unit, at just a month old (weeks before he should have even been born) he used to 'jump'.  At first we assumed that this was the normal reflexes of a newborn, particularly as my little newborn should have still been in my tummy.

This 'jumping' continued as J1 grew, but like everything we just assumed it was all normal and part and parcel of a baby.  As he got bigger, they got more frequent and for months I just always put it down to J1 being 'spooked', and reacting.

However, the 'jumps' started to become so frequent, they made me start to take notice.  What I noticed was that J1 could be as calm as anything and have a series of 'jumps' and this was happening many many times throughout the day.  This was obviously just one of things that I had started to notice that was not quite right, but it didn't occur to me either that it might be epilepsy.

One of the very first appointments we had to attend was for an Electroencephalogram (EEG).  As J1 sat on my lap and ate his lunch, looking a little like Medusa with all the patches attached to his little skull measuring his brain activity, the enormity of the situation still didn't occur to me.  It wasn't until the 'Accidental' diagnosis letter appeared that I realised, part of the diagnosis was 'Myoclonic Jerks' (possible epilepsy).

This worried me hugely.  I sort of understood epilepsy and I knew that I did not want my child to have that along with everything else he was dealing with.  However, after the EEG, it was like one small miracle happened.  The 'jumping' stopped.  And from the age of about 18 months to 3 we didn't see any activity that would indicate any form of Epilepsy.

Then something different started happening.  J1 started having episodes where he would go trance like and we couldn't snap him out of it.  Back to the Doctors we went and they suggested he was now having 'Absences'.  Again I was unfamiliar, as far as I knew Epilepsy meant uncontrollable fitting, I had to get into research mode and find out what I could.

J1 demonstrated these 'Absences' from the ages of 3 - 5, but again, thank the stars, they seem to have stopped occurring and I pray and pray that this continues.  So many of J1's school friends suffer with this terrible condition, and on speaking with many of the parents, it is this part of their disability that they struggle of cope with the most. 

Charities like Young Epilepsy provide essential support to parents like me, and are working hard to raise awareness of just how much Epilepsy is affecting young people today.   I will be producing a series of posts on this blog supporting Young Epilepsy and their campaign 'My Purple Pledge' which co-incides with the international 'Purple' day to mark Epilepsy Awareness on Monday 26 March 2012.

If you want to make a Purple Pledge please visit the Young Epilepsy website to see how you can help to make a difference.  Please support those who do deal with living with Epilepsy.  I am currently classing myself as one of the lucky parents who's child is not suffering with this condition, but I certainly live under the cloud of 'uncertainty' and pray that it doesn't rain down on J1 or my family again. 

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I would love for you to quack your thoughts along with me and will always try and quack right back.