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.

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4 responses to “Epilepsy update

  1. I can’t imagine how difficult L’s seizures must be for both you and her, plus trying to manage and cope with the unknown. I hope you get some answers soon, and that the episodes don’t progress to needing medication. It doesn’t matter if it is the most serious type of epilepsy or not, no condition is easy to deal with, and it’s always so awful to see your child suffer. It sounds like she is coping amazingly with it – total trooper, you must be really proud x

    • I am. She has been seizure free for a few months now which has been great. thankfully no meds needed and no big seizures. You just kind of get on with things but it’s pretty traumatic at first. x

  2. That’s really great news. I imagine it must have been very traumatic though, I hope things continue to go well x

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