Tag Archives: eeg

Medication potential

When L began seeing her neurologist, we were told that medication for her type of epilepsy was rarely called for.
Since L has been having frequent Magic Hand episodes, she is now back under review (which is why we took her for another EEG.)
Each time L goes to see her head Dr, a summary letter is sent to us and the health centre. The most recent one came today.
I knew medication was a strong possibility, but this letter indicates that medication is the next step for L. We’re still waiting on the results of the EEG.
I don’t know much about meds for epilepsy, but we were warned that they can affect behaviour and personality. She could potentially become more aggressive as a side-effect, although it’s hard to tell whether the changes are because the discharges in  her brain are being suppressed or because the meds are causing a change in the delicate balance of chemicals.
Knowing that my own delicate balance is a little precarious and there is depression, anger issues, anxiety on my side and Asperger’s on both sides of her family, the potential frightens the poop out of me.
Still, if it means she can have as normal a childhood as she can get (with us as parents, it’s unlikely to be that normal!) we need to give it a go. 

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Epilepsy update

Hello again.

It’s been a few months, hasn’t it?

Anyway, I’ve been updating some other blogs and having a break away from writing but now I think it’s time for a good old brain-fart.

L was diagnosed with epilepsy 2 years ago after a traumatic 40 minute tonic-clonic seizure. She did a three day stay on hospital where she had an EEG which (at that time) had indications consistent with Benign Rolandic Epilepsy in Childhood (BRE, BREC). She had an MRI just to make sure and when that came back all normal, her neurologist began a monitoring program.

The day before her next consultation, she had complex partial seizure. We did an ambulance journey and spent four hours waiting in A &E majors ( the bit where they have all the seriously ill patients which is pretty gruelling) to be told to go home and update her consultant the next day.

She was then put on six monthly monitoring where she would be discharged if she had nothing after a year.

Well, the first six months were fine, then she started school. We thought “magic hand” – she describes it as her hand moving on its own and says its tingly – was an aura, however when she started to get magic hand more than a couple of times a week, I began to wonder if this was far more significant.

I brought it up with her neuro at the last consultation and she said it is likely to be partial seizures, especially as its generally accompanied by a short period of confusion, clinginess, or feeling strange.

We are now into a new ball game with the epilepsy. No, it’s not severe, but if magic hand is seizure activity, she has had probably 20 seizures over the two year period and seems to have them in clusters when she’s tired. This could lead to the need for medication and that’s a pretty scary thing as it could potentially change her personality.

Anyway, as part of this new discovery, she has to have another EEG in the morning. The last one, though indicative, was inconclusive. So this time I’m hoping for some answers. It won’t change much, but it’ll better prepare us for the future.

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.