Additional Needs

How much seizure activity is too much?

Posted by Carolyn Voisey on 23rd July 2019 Additional Needs, Advice & Support, Disabilities

Share this article

This is not a question I ever imagined would be asked. By anyone. Least of all by parents like us who’s loved ones fight that monster on a daily basis.

Three years ago my little Dude had his VNS implanted.

It saved his life.

It has stopped countless seizures and reduced his seizure frequency by around 70-80%; he still has daily seizures but mostly they’re brief, over in a few minutes at worst.

But this evening we’re in the middle of a medication wean, its hot, he has a loose tooth and lo, the Epilepsy Monster has stuck HARD.

Sams seizure protocol is clear – he has emergency midazolam to be used if a tonic clonic seizure doesn’t stop within 5 minutes, or if a complex focal cluster doesn’t stop by 20 minutes.

This was a brutal complex focal even by Sam’s standards.

At 5 minutes it was evidently not stopping, by 15 we had the midazolam ready.

However by 20 minutes, the seizure seemed to be coming to an end... But how much seizure activity is too much?

How much shows a seizure is ending and is just residual twitches/jerks, and how much indicates that the seizure is regaining its hold?

It is an incredibly difficult call to make. Midazolam is known to cause immediate respiratory arrest, even if a patient has used it many times before.

However, not intervening can have equally serious consequences.

And this is my CHILD.

At 20 minutes for a complex focal, the risk of giving midazolam outweighs the risk of the seizure continuing.

I would do anything to swap places with him. Instead, I hold and reassure him while Daddy gives him the potent drug that we hope will stop the seizure... if it doesn’t, we’ll be spending another night in hospital with our boy.

The seizure is brought to a halt within a minute, every muscle starts to relax as the wildly misfiring brain cells are brought under control.

My boy leans heavily into me, his little body aching and exhausted.

Now the seizure activity is over, he can sleep and recover.

And one of us will be by his side throughout the night, just in case we need to fight the monster again.