Tag Archives: fear

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.

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Selotape, blu-tac and cake

I’m pretty sure that’s how I’m holding it together.

It helps that I spend hours every evening watching shit TV and mindlessly knitting while chomping 15 pieces of Dairy Milk and washing it all down with highly sweetened coffee.

The house is not falling apart but I am.

OH is having to do everything.  He’s working a full time job, cooking, cleaning, washing up, shopping, putting petrol in my car, getting us out of bed.

I’m cheering if I manage to get up, shower, and do a full morning without shouting. 

So far there has been no cheering.

I’m not desperately depressed but the size 8 trousers hanging from my prominent hips point to the fact that I am actually managing to burn off calories just by being worried.  I’m eating.  I’m possibly eating more than I normally would but still I’m getting thinner. 

For now, I just hope the selotape doesn’t begin to peel at the edges and that the blu-tac stays moist.

And that there is an endless supply of cake.

The secrets they keep

I’m in shock.

Someone I know has aggressive cancer.  Breast cancer. So aggressive they don’t think chemo will help.

She is having her breast removed.

It’s still a secret. I only found out because I asked a question at an unexpected time.

This changes Christmas. 

Fuck.

Spider!

We’ve had some bloody big buggers this year. Won’t even fit in a pint glass.

I hate them. They freak me out. They move too fast. I can’t help it.
My plan was to raise my children with a healthy fear of these creatures but, as you will see, I have failed miserably.

Our first SRI (Spider Related Incident) happened when the Toddler was about 14 months. We gave her some cardboard tubes to play with. You know, the big ones from the middle of wrapping paper. She would use them as trumpets, megaphones, swords or a walking stick.  She also liked to poke them behind the telly.

One day, she poked, went to put the tube to her face but noticed something.

“Mummy!” She said, hand in pincer position.

“What have you got?” I asked, stupidly holding out my hand. She drops the curled up carcass of one of those super spindly spiders with the teeny bodies into my hand and toddles of, blowing her newly cleaned trumpet. Thanks child.

The second incident, and by far the worst, happened when she was about 18 months old.  It was a Monday night so we were at mums. I think we had eaten our dinner and pudding and she was becoming idle waiting for OH to finish playing footy.  She wandered up the opposite end of the room, bent down and plucked something up off the floor.

“RAISIN!” She cried gleefully, popping it into her mouth.

It took a second before I thought “Wait…mum doesn’t have any raisins…”

I jumped to my feet and ran over to her, jamming my finger in her mouth only to fish out…

Yes, it was a big bugger. Already dead with its legs curled under it before she got to it.  She hadn’t managed to chew it, so it was pretty intact. 

You may puke now.

The third incident which proves that my fear breeding is failing happened this evening.

She was emptying out the new blocks bag I made her when her eagle eyes zoom in on something and she picks it up.

“Spider! Look!” She was excited. I was far away. Daddy was closer.

“She’s got a spider.” I prompt OH. I’m a serious wuss about them. He leans forward to have a look but can’t see.  Just to be on the safe side, and because handling them is also beyond his confort zone, he picks up a block and asks her to drop it in so he can look at it.  She does so with relish.  She wants to see it crawling around.

He looks at it.

“It’s a piece of grass.” He says, tossing out the window just in case.

Urgh

I bet you thought you’d escaped tonight without a post as I’ve been out and haven’t had the chance to catch up on typing up all my notes meaning that my schedule has fallen way behind.

But, alas, there is no escaping.

Ok, I’ll make it a short one.  I just got in and a huge spider ran from under my sofa out into the middle of the living room.  I mean massive.  OHs mum wasn’t dealing with it and I don’t blame her.  It was the size of your hand. So I had to go and get my neightbour to remove it.

I know, I know, I’m a wuss.  I don’t mind them until they start moving and then they make my ears go funny and make me shake.  I hate it.

Anyway, i’m just relieved I didn’t lie down there for a sleep.  I could have woken up with it on my face *shudders*.

I’ll leave you all now with that thought and go do something else somewhere else.

Night!