Thursday, 26 March 2009

World Epilepsy Day - I keep repeating myself…

I keep repeating myself. No, I really mean it. I have to keep repeating myself for the benefit of The Boy. I sat with him at lunch and he blanked on me four times in 20 minutes.
It has actually become second nature to me that whenever I see him blank I wait until he regains consciousness and then repeat my last few orders. For it is usually when I have just given him a set of commands that he blanks.
Now of course, it could be that he suffers the same problem as most males in that as soon as a female starts to use officious language with words of more than two syllables then the male becomes temporarily unable to hear. I know my father suffers from sporadic deafness and it can be most debilitating for my mother.
But that is not the problem. The Boy has Absence Seizures, a form of Epilepsy known in the old days as Petit Mal. So what is it? Well it means he blanks or zones out for a short time every ten minutes or so and has no recollection of doing so when he regains consciousness. He doesn’t fit, or twitch in fact some motor responses continue such as walking even though he is totally unaware of his surroundings. You don’t always see it happening, it can be very fleeting and if you don’t know what you are looking for, well it is nigh on impossible to find.
So for a long time we didn’t realise that there was anything particularly wrong. He just seemed to be a bit of a daydreamer, a bit clumsy and well a bit slower than the other kids at school - although I might add far too quick and cheeky at home.
Because it is so difficult to pinpoint, Absence Seizures are frequently misdiagnosed not least because many children grow out of it naturally. It in no way affects his intelligence but it does affect concentration levels, and can, and does, cause havoc with learning. If you are only getting half the instruction because you zone out on the other half you can't really learn very well can you?
In so far as trying to understand what it is like for him I imagine it is like a record that suddenly jumps. It must jar and befuddle one though he just gets on with it. His answers are a bit well surreal to some questions but on the whole a stranger who did not know better would have no idea.
However, at a time when he should be beginning to relish new found freedoms such as going to the Village Shop by himself or riding his bicycle on the road he can’t because in those moments of unconsciousness he could just as easily step out in front of a car or swerve in the road.
What is really annoying is that apart from repeating myself there is nothing I can do and for any parent that is truly frustrating. However I can raise money for Epilepsy Action. This charity has been so helpful and so marvellous in supporting us that it felt churlish not to do something in return – so in a fit of altruism I signed up to run the FloraLondon Marathon this year
For those who would like to support my endeavours with a donation towards Epilepsy Action you can do it via the internet by visiting my Justgiving fundraising page http://www.justgiving.com/lizasmarathon

10 comments:

Mud in the City said...

A great cause. How's the training going? I have to run tonight and would much rather be heading home to a sofa and a bottle of wine.

Will be keeping a look out for you!

Iota said...

Good for you. I'm full of admiration.

mountainear said...

Thank goodness for charities like this - who are there for you and can help when you find yourself faced with something new and alien like epilepsy.

Always good to put something back. The very best of luck with the Marathon.

Calico Kate said...

Sounds like you/he are coping really well.
Good luck with the marathon! You are one Brave lady!

Pondside said...

Good luck with the run!
Over here World Epilepsy Day has been given lots of good press, and we are sponsoring a local young man.
Go Tattie, go!!!!!

Faith said...

Informative blog, and very good luck with the marathon.

Frances said...

Tattie, this is a fabulous post, and will be so informative to many. Best wishes on that marathon. xo

ChrisH said...

My niece has absence seizures too, it's been tough for my sister to get her the right treatment. Very good luck with the marathon... not long now!

elizabethm said...

Thank you for this - really interesting! I hope your training is continuing to go well. Am a bit in awe of the marathon!

Sharon said...

Hi,

Epilepsy has gone from an obscure mental illness, to a serious illness recognized by state foundations. This remarkable awareness, is because of the great work organizations, such as yourself, has done. We here, at Disease.com, fully support the cause your organization stands for and we are dedicated to aiding in your mission statement. Disease.com is a website which features disease and infection preventions/treatments. If you could, please list us as a resource or host our social book mark button, it would be much appreciated. Lets dedicate our time to the welfare of the 3 million individuals with epilepsy.
If you need more information please email me back with the subject line as your URL.


Thank You,
Sharon Vegoe

Go on you know you want to...

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