Tuesday, 26 March 2013

The Epilepsy Lie

I have a bone to pick with the larger epilepsy charities and their blatant propaganda exercises in which they try to ‘normalise’ epilepsy.

"... Epilepsy is not something to be afraid of.

Epilepsy is not something that should stop you living a full and rewarding life.

Epilepsy is not something that should prevent you from achieving and fulfilling your dreams. ...." And so on ...

Really? I beg to differ.

That’s not the epilepsy I know.

I have approached a few of the charities with things I have written in the past. My posts never make the glossy magazines. They don’t get retweeted or recommended. My experience of epilepsy isn’t the kind of epilepsy they want to talk about. It’s not the kind of epilepsy they want publicised. It’s the epilepsy to be condemned to the shadows and ashamed of; the epilepsy that destroys lives.

In their push to ensure that the public understand that epilepsy can be treated and ‘normal’ life can resume, they’ve excluded those of us for whom that simply isn’t true. In their drive to remove the stigma and fear associated with epilepsy, they’ve belittled the demons that keep me awake at night.

Don’t tell me not to fear epilepsy; I will show you a mother who has given mouth to mouth to her own son at the side of a busy road.

Don’t tell me that normal life can continue; I will show you a boy whose seizures stopped him being able to swallow and who has to be fed by a tube.

Don’t tell me that epilepsy shouldn’t prevent you from achieving your dreams; I will show you a child who has repeatedly lost skills and been unable to develop due to the devastating impact the seizures have had on his brain.

1 in 130 people in the UK have some form of epilepsy

Approximately 70% of children who develop epilepsy will respond to anti-epileptic drugs. The remaining 30% will develop difficult to control seizures or ‘medically intractable’ epilepsy.

There are approximately 1,000 deaths from epilepsy each year in the UK. That is 3 people every day.

More than 500 are attributed to Sudden Unexpected Death in Epilepsy (SUDEP). This is greater than the average annual number of cot death and AIDS cases COMBINED.

(Source: http://www.sudep.org/whatwedo/learnmoreaboutourwork/)

Whilst I am happy that awareness of epilepsy is being raised, I am worried that downplaying its severity merely encourages complacency and marginalises those of us who live within the shadows of ‘complex epilepsy’ every day of our lives. There are many different sides to epilepsy and some of them are devastating.

Don’t tell me not to be sacred. I am terrified!

Friday, 22 March 2013

The Birthday Boy

My blog photo for H's second birthday
This time last year I was preparing to celebrate Little H’s second birthday.  The thought of which filled me with a strange mix of emotions.  I was terrified for his future but felt lucky he was still with us;  I was acutely aware of how many times we could have lost him.  I was proud of his achievements but saddened by the ever growing gap between where he was and where he ‘should’ be. 

This year things are different.  Very very different.  And yet in many ways, not that different at all. Little H is still profoundly disabled.  He always will be.  But I think perhaps I am more at peace with that now.  In some respects, the burden of striving for the unattainable has been lifted and I can take genuine pleasure and delight in the achievements and accomplishments he makes.  Of late there have been many, most noticeably and most heart warming is the beautiful chuckling sound he makes when I blow raspberries on his cheeks or tickle his toes.  To be able to elicit such a definite response fills me with such joy.  A tiny tiny step to most but a huge milestone for us.  I feel lucky to see and appreciate it as such.  H is turning to sounds more and smiling more often in recognition.  His eye contact, although fleeting, is becoming more frequent and he looks more to our faces now than ever before.  He is using his hands to explore objects with less support and is making more sounds, for pleasure, to object and to interact.  His Conductive Education classes are going well, which is a huge step – it’s not that long ago I was considering pulling him out of them as all he did was cry and sleep throughout them, but now he remains awake for the whole session and works hard.  He really does work hard at sitting and rolling and crawling – all with support of course – but he is no longer objecting like he used to and is now participating more actively.  He’s even trying to make sounds into the microphone at the start of each session which is lovely, if a little frustrating, to watch as he moves his mouth in a concentrated effort to force a sound out.  Occasionally he manages, but it’s more the effort that he is putting in that makes me so so proud of him.

His health has improved dramatically too.  A year on the ketogenic diet and the seizures that controlled our lives last year are a thing of the past.  They are still a risk of course, as we were reminded recently by their unexpected return, but as long as they don’t return with the frequency and ferocity of the past then I am pleased to confirm the ketogenic diet has been a success.  The most recent setback I have put down to acute illness and a timely reminder not to be too complacent, to remain vigilant and to continue using the SATs monitor at night.  The move from the NG tube to the gastrostomy in June and then the mini button in October has been a resounding success too with no obvious complications except for perhaps an increase in the severity of his reflux which has been mostly controlled with the re-introduction of omeprazole and gaviscon and careful positioning at night.  His new fancy hospital style bed and his move to a big boy bedroom of his own has ensured Mr. M and I get much better night’s sleep and although H continues to wake regularly at night, he is less unsettled and generally happy to play quietly with his hands until he falls back to sleep some 2-3 hours later.  H had his tonsils and adenoids removed in October as well which has eliminated the need for overnight oxygen and has improved the overall quality of his sleep and in turn his levels of alertness during the day.

This past year has seen dramatic changes in H and in me.  His health has improved so much and his character is starting to shine through.  I am truly honoured to have such an amazing little boy (two little boys in fact) in my life.  In three short years H has been through so much and taught me so much.  I am privileged to have him as my son.  I hope you’ll all join me in wishing my beautiful, brave little man a happy third birthday and may he (and we) be blessed with many more birthdays to come.