November is Epilepsy Awareness month and since I have a pretty awesome little guy who happens to have epilepsy, I figured I should really write about it.
I’m sure a lot of the parents on this page will know all too well about epilepsy and the effects it has on the individual as well as their wider circle of family and friends.
For those who don’t know as much about it, I hope this gives you a teeny bit more info to go on if you ever have epilepsy brought into your life in some way.
It is a neurological (brain) condition that means a person has a tendency to have multiple seizures i.e. not just a “one off” like a febrile convulsion (when the body’s temperature suddenly jumps up) for example.
It happens when there is a mix up in how the brain cells communicate, causing a sudden burst of electrical activity that disrupts how the brain normally works.
Doctors will diagnose epilepsy based on clinical history and/or an electroencephalogram (EEG) which detects if the person is having a seizure at the time of the test.
Epilepsy Action suggests there are eight different types of epileptic seizures, depending where in the brain the misfiring occurs as well as how severe it is.
Our little man has focal epilepsy of both aware and unaware seizure types.
This means that his seizures start in a particular spot, thought to be his right parietal lobe (based on his EEG results).
This is probably because he has hydrocephalus which is controlled by a ventriculoperitoneal (VP) shunt that may be affecting how his brain cells are talking to each other in that area.
They can then “generalise” which means it spreads to both hemispheres of his brain causing symptoms on both sides of his body.
Jacob is a full time wheelchair user so we don’t really know if his legs are affected when he has one, but he usually goes floppy and is unable to speak.
Over time he’s explained to us that his mouth “goes to sleep” and he “feels numb everywhere”.
Symptoms can vary and there are very tricky seizures where he has had very vivid visual hallucinations of a fire in the room.
How terrifying that must be for anyone never mind a six year old child.
His seizures used to respond well to rescue medications designed to stop them and allow his brain to rest; although recently he has become what they call “medication resistant”.
This means Jacob continues to have numerous seizures despite being on the maximum dose of three different anti epileptic meds.
He has been hospitalised due to epilepsy 11 times now because the rescue meds just don’t seem to work for whatever reason.
We’ve had to go through resus more times than I want to remember so that they can give him a paraldehyde enema then phenytoin infusion as second and third line treatments to stop the seizure.
It is very traumatic for him, us and his wider family.
We’re waiting for an MRI now that will hopefully give the neurologist a more clear idea of what’s going on.
What we also struggle with a lot is getting people to understand that Jacob IS having a seizure despite it not being the stereotypical tonic-clonic type where someone’s muscles stiffen (the tonic phase) and then jerk uncontrollably (clonic stage).
We’ve had paramedics asking if we were sure he was really having a seizure or was he not just drowsy from his rescue meds.
This is usually the point I turn into a bit of a psycho mummy and play the “I’m a trained nurse” card, which seems to work most of the time.
It is these times he is in a state of “non-convulsive status epilepticus” which is the medical way of saying he is having a seizure that isn’t stopping and is very much in trouble.
This is a medical emergency and really does need quick action even if it doesn’t look typical of epilepsy. Generally though the paramedics are absolutely amazing at keeping our little man as safe as they can.
So what’s the best thing to do if you see someone having a seizure?
Well, it really depends on what type of seizure they are having.
First aid advice for a tonic-clonic seizure is to not move them while they are experiencing jerking movements but to ensure they are safe by moving them away from any obvious danger e.g. a hot radiator.
If you can, try to time how long the jerking lasts and ring 999 immediately for help if you don’t know the person.
Some people will carry little emergency cards with information on the type of seizures they have and who to contact in an emergency so it’s a good idea to check for one of these if it’s safe to do that.
Epilepsy will always be part of Jacob and all of our lives, although I am hopeful one day he will be seizure free or at least have much tighter control of it.
In the meantime, it’s really a full time “job” (for lack of a better word) to make sure he is safe.
We try to take as many “positive risks” as we can and build happy memories as a family.
I’ve been advised, very wisely, to take things one day at a time so for now that’s what we try our very best to do.