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Five things I’ve learned about epilepsy since my son’s diagnosis

Five things I’ve learned about epilepsy since my son’s diagnosis

In my mind, they were convulsive and very obvious-  what’s commonly known as tonic clonic seizures, or previously as grand mal seizures.

I wasn’t aware that seizures could be subtle or easily missed – staring into space for long periods of time or repetitive movements like lip smacking or hand wringing, for example.

My son, Hugh, had his first seizure that we are aware of at 9 months old, but it took a further 4 months and repeated episodes before they were diagnosed as epilepsy.

His seizures are incredibly subtle and cause him to stop breathing for minutes at a time.

Since then, he’s also developed seizures where his whole body stiffens (tonic seizures), seizures where he goes completely limp and unresponsive (atonic seizures), ones where he grinds his teeth and makes repetitive movements (focal seizures) and some where he stares into space without really seeing anything (absence seizures).

For a comprehensive list of seizure types and how to respond if you see someone having one, click here.

2. Diagnosis isn’t always straightforward

An electroencepholagram (EEG) detects abnormalities in brainwaves and is just one tool that can be used to diagnose epilepsy.

Small sensors, called electrodes are stuck to the head using glue or tape and record electrical signals from the brain onto a computer.

Hugh had 4 normal EEGs before finally being diagnosed with epilepsy after his 5th EEG.

EEGs can only measure electrical activity in the brain at the time the test is being carried out and whilst some types of epilepsy may present with irregular brainwaves all the time, other people only show unusual electrical activity at the time that the seizure is happening.

During the first 4 EEGs Hugh had, he didn’t have any seizures so the doctors decided to give him an ‘ambulatory EEG’ whereby Hugh came home from hospital with the electrodes still attached to his head and a small recording device with a button we should press should we notice any unusual behaviour that we suspected might be a seizure.

It wasn’t easy to keep his little hands from pulling at the wires attached to the electrodes on his head.

Manoeuvring a baby, a head full of wires and a little recording box from cot to pushchair to car seat etc wasn’t much fun either.

However, this time, the EEG detected a seizure and so a diagnosis of epilepsy was made when he was 13 months old.

MRIs and blood tests can also be carried out when diagnosing epilepsy, but often detailed descriptions of the seizures are the most helpful tool in reaching a diagnosis.

3. The importance of record keeping and taking videos

Keeping a detailed seizure diary is really useful when attempting to diagnose epilepsy and/or find the correct treatment.

I experimented with a number of different ways of recording seizure activity, including, at one point a pretty comprehensive spreadsheet that created graphs! There are even apps available now.

Essentially the key things you need to note is the when, what happened and how long for.

A good description of the actual seizure really helps. Things you could look for are:

  • level of consciousness – can they hear you/respond to you?
  • unusual eye movements – are their eyes rolling/blinking rapidly/looking in one direction?
  • unusual muscle tone - are they more floppy or stiff than usual, is this in one limb or all of them?
  • Is their breathing affected – note changes in breathing pattern or any blue tinges around the lips.

The most useful thing I have found though is to take a video. With smart phones now, it is incredibly easy to do.

The thought of videoing my child while he was having a seizure really troubled me, it goes against your nature to video your child in such a distressing situation.

However, that first video was essential in ensuring the right diagnosis and treatment for Hugh.

Interestingly, although I thought I’d recalled all the essential points about the seizures, the video picked up on nuances that I hadn’t noticed.

I regularly video his seizures now and show them to his neurologist as well as use them to train staff working with him on what to look out for.

4. There is not always a simple treatment option

Naïvely, I assumed that once we had a diagnosis of epilepsy that the hard part was over and that treating it would be simple.

Thankfully, for the majority of people, finding the right anti-epileptic drugs is reasonably straightforward, and whilst they won’t cure epilepsy, they can work to control the seizures.

However, some 30% of people with epilepsy can’t find the right drug or combination of drugs to control their seizures – this is known as medically intractable epilepsy.

Hugh tried 7 different anti-epileptic drugs, none of which managed to get his seizures under control.

The side effects of the drugs were, in some cases, as horrible as the seizures and the whole process of starting a drug, slowly increasing it to the required level, discovering it wasn’t working, slowly weaning him back off it whilst simultaneously introducing another drug was painstaking and soul destroying.

Anti-epileptic drugs aren’t the only epilepsy treatment available and Hugh has tried the ketogenic diet with some success and recently had a vagal nerve stimulator (VNS) fitted.

You can find out about the ketogenic diet here and the vagal nerve stimulator here.

5. Epilepsy doesn’t have control your life… but you may need to work at that

A diagnosis of epilepsy can be devastating, particularly if it is hard to find the right treatment to control the seizures.

I’ll be honest, epilepsy has had a huge impact on our lives and prevents us from doing many things.

Hugh’s seizures are such that we need to be able to get medical help very quickly, so trips abroad can’t happen (in case he had a seizure on the boat/plane) and many an event has been cancelled at short notice due to an increase in seizures.

There was a time when we rarely left the house, his seizures were so frequent and severe.   However, we work hard to try and enjoy life as much as possible; we’ve learnt to live in the moment.

If that means one parent stays home (or in hospital) with Hugh while the other takes our elder son out, then that’s what happens.

If Hugh is having a good spell then we make the most of it, we go out and enjoy life as much as we can.  Hugh’s epilepsy might influence our decisions, but we work hard to ensure it doesn’t control us.

It’s not always easy and our expectations have had to change, but I’m determined that epilepsy won’t ruin our lives.

Hugh Murphy is 7 years old and has medically intractable, life threatening epilepsy. He regularly needs to be resuscitated during his seizures. H

e is currently taking 2 anti-epileptics daily and uses a vagal nerve stimulator. His epilepsy is still not controlled but there have been recent improvements following the VNS implant.

His mum Emma Murphy blogs at www.LittleMamaMurphy.co.uk and you can follow Hugh’s story on facebook.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emma Murphy

Meet Our Blogger

I’m a special needs teacher and Mum to two young boys, the youngest of whom has a rare genetic disorder called FOXG1 syndrome and severe epilepsy.

View Emma’s Profile

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