Epilepsy

It’s official.

L has epilepsy. 

The definition of epilepsy is two or more seizures.  L has only had one seizure.  Every one is allowed one seizure.  Normally.

You see they don’t normally investigate a single isolated instance because seizures happen.  They happen for lots of reasons.  Once, this one time could be a one-off, so normally our local hospital wouldn’t bother to investigate,

L’s seizure did not fall into the normal category.

It started primarily with her left side and once it was over, her left side remained weak for a few hours.  This always flags up as unusual and cause for further investigation, even though after some questioning, I have found out that some weakness in one limb or side of the body is common.  She wasn’t found to have a fever when the first responder arrived, which is another flag.  Young children are prone to seizures when they are ill, particularly if they have a high temperature (although you lot will already know this – I know one of my worst fears was the dreaded febrile convulsions.) The final cause for concern was the duration.  Thirty minute seizures are a medical emergency.  L was forty minutes.  That is a long time. A forever really.

So, they investigated.

The awesome (yet also slightly scary) news we had on friday was that her MRI was normal.  There is nothing structurally wrong with her brain which would have caused the fits.  A relief.  The alternatives are scary…

But they also would have offered an explanation.  They are something that can be fixed (for the most part) so therefore they would take the risk of seizure with them.

Now for us and their childcare and anyone who looks after my daughter the risk is there.  There is always a chance she may have another fit.  She has no triggers so we can’t control what she has access to and they won’t medicate for a single episode so we just live and wait.  I am constantly terrified she will go again an the sickening memories will return and be played out.  I’m scared she’ll do it when I’m there and this time I won’t recover.  I’m scared she’ll do it when I’m not there and I’ll feel guilty for not being there for her when she is terrified and just needs her mum.  The whole thing has my head whirling.

We’ve told everyone about the clear MRI and it’s been asked if that just proves it was a one-off.  Oh how I would love too be able to sweep it under the carpet.  To pin it to a virus or similar and just carry on would be great.  But she had an EEG during her time in hospital. 

An EEG measures brain activity and draws it out on a neat little graph.  I spent a long time reading about the brain and how it works and I still don’t fully understand.  From the information we have though, Ls brain activity is abnormal.   She has discharge spikes.  They are regular and linked to specific areas of her brain.  When one of these spikes reaches a certain threshold, she will have a seizure.  There are no set triggers to these spikes.  The threshold is her own tolerance which will rise as she gets older. 

The spikes she has are typical of Benign Rolandic Epilepsy.

So we wait.

Advertisements

5 responses to “Epilepsy

  1. I would be interested to k now if there is any link between those spikes of abnormal activity and super cleverness – she falls into that catergory easily!

  2. A horrible situation, terrifying. And I can totally understand your living in fear of another fit. Is there any consolation at all in now having a name for the specific type of epilepsy – even though it can’t be medicated? I guess you’ll get used to living with it, as it’s impossible to live in a constant state of fear forever. Wish I could offer advice / been there type words. Didn’t want to read and run though, sorry for the rambling ineffective comment!

    • Don’t be sorry at all.

      It helps to know it has a name and I’m less fearful now she’s been ok for a while but I think that’s more the mental block I put up to stop the images. I find comfort in the fact that the fits aren’t harmful. She returns to normal a couple of hours later.

  3. I am sorry you have to experience this. It is difficult news for a parent. I hope L outgrows her Benign Rolandic Epilepsy very quickly!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s