Don’t Let Epilepsy Rule Your Child’s Life

Felicity’s Story:

mother with two boys who have epilepsy
Felicity Brown, 27, from Fife, Scotland has two young boys with epilepsy.

Since her eldest son Daniel was diagnosed in October 2013, Felicity has become somewhat of an epilepsy equal rights guru, ensuring her son lives his life as any child would.

 Diagnosis is the Hardest Part

Baby with epilepsy

Felicity and husband Mark had a long and stressful wait before Daniel was diagnosed with epilepsy at the age of four.
“Diagnosis is the hardest part. We waited so long to find out what was making Daniel poorly,” says Felicity.
“Daniel had been unwell for about 18 months with unusual seizures. The doctors didn’t understand what was wrong and after several appointments he got sent for an EEG (electroencephalogram) screening. A week later the consultant told us the news.”

The mum of two was six months pregnant with her youngest child Blair (pictured right) when she was told Daniel had epilepsy.

“It’s been a steep learning curve as at the time I knew nothing about epilepsy. Now I feel like I’m running an epilepsy equal rights act to make sure Daniel is able to do anything he wants.

“The amount of hospital appointments can be difficult at times, especially with both boys having seizures. Blair hasn’t been formally diagnosed yet but we’re pretty sure that it’s epilepsy he has too.”

But Felicity points out that diagnosis isn’t all doom and gloom.

“The good thing about it is that he can now get the help that he needs. It gets better when you know what’s wrong as the right plans can be put in place.”

Get the Support You Need

While it’s important to ensure schools and nurseries have all the right information, Felicity says you should let them help you as well as you helping them.

two brothers with epilepsy

“When Daniel was first diagnosed I was trying to make things easier for the school as opposed to saying what can you do to help me.

“Once the epilepsy nurse went in and explained what Daniel could and couldn’t do, the school became very good at including him in PE classes and other activities.”

The busy mum says you should also seek advice from experts and find out what you’re entitled to.

“I didn’t realise for a while that we’re entitled to disability living allowance. It’s important to find out what your rights are.

“Always phone your epilepsy nurse if you need help – I have her number on speed dial now,” says Felicity.

Let Epilepsy Aids Help You

When Daniel was diagnosed, doctors recommended he wore some kind of medical ID.
“They gave me a leaflet with metal jewellery and dog tags, which wasn’t ideal for an active four year old.

“My friend who is a paramedic suggested The ID Band Company, where I was able to buy child-friendly silicone bracelets for both his food allergies and the epilepsy.”
Although people who care for Daniel are aware of his condition, Felicity says it’s good to have that visual aid.
“He’s now reached an age where he’s going to after school clubs like Boys Brigade and a wristband is a good visual reminder for his allergies during snack time. If he has a seizure, my number is always there for people to call me as well.
“A lot of Daniel’s friends have allergies and they love the Allermates bracelets. They’re fun to look at and there’s no way of kids catching them on climbing frames or anything like that.”

boy with epilepsy wears medical ID wristband

First Aid is the Key

Felicity and husband Mark have been volunteering for St Andrews First Aid for 24 years and took extra interest in child and baby classes when Daniel was diagnosed.

“They teach you to look for medical ID jewellery in all emergency situations. It was them who told us to opt for the colour red when choosing your alert jewellery as it stands out.

“A first aid course will give you confidence on how to handle a situation if your child does have a seizure when out and about.

“We’ve had a few emergencies with Daniel – the worst was when we were in a soft play area. Seizures can be triggered by over simulation. Daniel was at the very top of a play area which was three storeys high.
“We were new to epilepsy at the time so it was quite a scary situation. We phoned an ambulance and we knew the paramedics who came out so that was quite reassuring, but it can be very scary so you need to be prepared.”

Epilepsy Education

Felicity feels frustrated that so many people are ignorant when it comes to epilepsy.
“There’s not enough awareness. We’ve had comments from people about epilepsy being contagious and that Daniel isn’t as bright as he used to be. This isn’t the case at all, he’s a perfect, happy, bright 5 year old boy; he just sometimes falls down.”

Communicating about the condition more will educate others and in turn help people who have epilepsy.
“We just need to talk about it more instead of it being a taboo subject. Children with epilepsy only need a few adjustments made to their life, it’s nothing to be scared of.
“Daniel’s not invited to many birthday parties because parents are too scared. It breaks my heart. Parents are worried about what to do if he has a seizure, when all they really need to know is to call an ambulance.
“Don’t be scared to answer questions about things because family and friends will want to know and help you in any way they can. Make them aware that it’s not as scary as people think.”

Epilepsy ABC’s for Children

teaching young children about epilepsy

Felicity offers her advice on how to educate little ones about the condition.

“We’ve taught Daniel that when he has a funny feeling in his tummy he should let a grown up know and they’ll find a quiet space for him while he has a seizure.

“You don’t want to scare them, just let them know that it’s ok when they have that feeling and they just need to let an adult help them. I don’t want Daniel thinking about it too much, we do the worrying for him.”

Felicity has made sure Daniel can take part in after school activities.
“He loves his boy’s brigade and starts swimming lessons next week. He goes to a group run by the Salvation Army, which he loves too.
“We just need to be careful of contact sports, especially as he gets older as they could be problematic if his head gets knocked.
“If there’s anything he wants to do, we’ll find a way for him to do it. We don’t let epilepsy hold him back.”