My child got diagnosed with epilepsy – now what?

Words: Nicole Bateman

My boy was lying on the bathroom floor, unresponsive, colour drained from his face, unconscious… How did a simple bath with his sister end up like this I asked myself?

Seizures can happen to anyone, at any point, at any place; they can sneak up and ruin any moment. Seizures are sudden and temporary changes in the electrical and chemical activity in the brain which leads to a change in a person’s movement, behavior, level of awareness or feelings. There is no specific age where you typically have your first seizure. It is estimated that about 1 in 10 of us will have one seizure in our lifetime but not all seizures are epileptic seizures.

Epilepsy can affect anyone from zero to over 100 and it is the most common neurological condition in the world! 26th of March is Purple Day – a day to raise awareness about epilepsy and a perfect opportunity to bust some myths and break the stigma that often surrounds the condition.

So, let me take you back to the beginning. It was July 2020, it was a normal day, my children and I were in the bathroom and they were having a bath, nothing seemed out of the ordinary. But then I saw that my son was hunched over and looking really rigid. I tried to get his attention but he wasn’t responding. Nothing. I took him out of the bath and I tried to get him to talk to me, but he wasn’t. There was no response, his eyes were staring, fixed, blank and I was starting to panic. I thought he was dead. I called 999. It was the longest 2 and a half minutes of my life…putting him in the recovery position and waiting. Suddenly he came around, dazed and confused but ok. He then said he was tired so I carried him to bed and he slept whilst I watched him like a hawk!

Since that moment, since that first seizure, everything has been different. I am in a constant state of high alert, just wondering when the next one will come. As parents we want to be able to protect our children from any harm don’t we? I would do anything I could to stop the seizures and the impact of them and the medication on his daily life, but the fact is I can’t. For 20 months we’ve been trying different medications with a variety of side effects. Right now, between 30% of people who have epilepsy live with uncontrolled seizures like my son so the work of charities like Epilepsy Research UK and Young Epilepsy is vital for raising awareness and finding better treatment options for the condition.

After my son had two more seizures within 12 hours we were admitted to hospital and investigations such as an EEG and an MRI were carried out to find out what was going on in his brain to cause the seizures. We were then told he had temporal lobe epilepsy and I was left thinking, now what!?

Since that day I have made it my mission to raise awareness of the condition and the impacts on individuals and families so here are 3 myths I would like to bust…

1. MYTH: Just avoid strobe lights and it’ll be ok…
2. MYTH: You can swallow your tongue during a seizure
3. MYTH: Seizures are when you have fall to the ground and shake

1. MYTH: Just avoid strobe lights and it’ll be ok…

Before my son was diagnosed with epilepsy I thought that THE trigger for seizures was flashing lights. That’s why they sometimes have a warning in clubs and concerts for those with epilepsy right?!

FACT:

About 3% of people with epilepsy have photosensitive epilepsy so therefore their seizures are triggered by flashing lights but not the other 97%. My son’s triggers are excitement, illness and stress which are hard to avoid in life aren’t they!?

2. MYTH: You can swallow your tongue during a seizure

That is something I have heard a lot before!

FACT:

It is physically impossible to swallow your tongue and you should never force something into the mouth of someone having a seizure. Learning some seizure first aid would be helpful so you know what to do if you witness someone having a seizure.

1. STAY with the person until they are awake and alert after the seizure… time it, remain calm.

2. Keep the person SAFE… protect them from injury, guide them away from harm but do NOT restrain them.

3. If they are not aware or awake then put them on their SIDE… Keep airways clear, put something small and soft under their head.

Call 999 if the seizure lasts more than 5 minutes, if they are injured, if they have difficulty breathing, if they don’t regain their usual state, if they have repeated seizures or if this is their first ever seizure.

3. MYTH: Seizures are when you fall to the ground and shake

A common misconception is that all people with epilepsy have ‘tonic-clonic’ seizures (falling to the ground and shaking) as it is often depicted in films or on TV.

FACT:

There are over 40 different types of seizures and not all of them involve loss of awareness and convulsion (shaking). My son has 4 different types of seizures, some where he is aware and others where he is not.

There is no cure for epilepsy but charities like Epilepsy Research UK are funding vital research into finding a cure and better treatment options with less side effects. That is why my brother ran 4 half marathons in 4 days, on behalf of my son, to raise money for that life changing research. The brain is amazing but the brain is so complex that even the brightest minds still have so much to discover!

So what can you do?

• Learn seizure first aid – you never know when you might need it!
• If you know someone with epilepsy, ask them about it! Find out about their specific type.
• Donate some money to charities such as Young Epilepsy or Epilepsy Research UK
• Share a fact you have learnt from this blog on social media and tag @a.box.full.of.joy.uk to raise awareness about epilepsy.
• Wear purple and use the hashtag #purpleday on March 26^th (and if you have a pet then join in with #purpledaypets)
• If your child has recently been diagnosed with epilepsy then feel free to connect with me on Facebook: Nicole Bateman or join my group ‘My child got diagnosed with epilepsy…now what?’ for a checklist and useful websites to find reliable information.

About the author

Nicole Bateman is a mum of two, former teacher and owner of A Box Full of Joy. After her son was diagnosed with epilepsy emotions were at an all-time high in her household so she created resources to help him communicate his feelings and to help her deal with her overwhelm. Now she supports other children who struggle to communicate their feelings or feel anxious through her stationery, workshops and coaching. You can find out more at www.aboxfullofjoyuk.co.uk and connect with her www.instagram.com/a,box,full.of.joy.uk