A problem shared: how do we live with epilepsy?

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Something troubling you? Share it with your new BFs, Jo Davison and Nik Brear

I am a mum of an eight-year-old son who has just been newly diagnosed with epilepsy.

His seizures are quite erratic at the moment and his situation is currently being reviewed by his neurologist at the Ryegate Centre in Sheffield.

Both his dad and I feel very isolated as a lot of our family and friends don’t understand how difficult it is at times to be living with a child with epilepsy due to them not understanding the condition.

Also our son is struggling to understand what is happening to him and why. He needs to learn about the condition and how to help manage it.

We are finding it difficult trying to lead anything like the normal life which he was used to before he started having the seizures.

We don’t want to treat him differently to his brother and sister, We don’t feel that wrapping him up in cotton wool is the right thing to do, even though our protective instincts tell us to do exactly that.

The thing that really worries us is what happens to him when we are not around to help him if he has a seizure.

It makes us cautious that he doesn’t spend too much time away from us and when he does have to be, like during school-time, we want to ensure he is with people who know what to do of a seizure occurs.

One of the other issues we are struggling to cope with is teaching his friends and his school about his Epilepsy while also getting them to accept him as the same person he was before the diagnosis ,and to treat him the way that they would before.

We would love the opportunity to speak to other parents in a similar situation, and also give our son the chance to speak to other children with epilepsy so he can see that it’s not just him, and that this doesn’t have to affect the way he lives his life.

I also think that epilepsy affects a whole family. His brother and sister are also struggling to deal with this and I feel they could benefit from meeting or speaking to other siblings. Can anyone help?

Jo advises:

What a worrying time you have all been going through.

Big new demands have been placed on your entire family. A serious illness is in your midst and it’s vital you all know how to cope in an emergency. But you’re through the worst; you know what the problem is and have medical support. Your son is in safe hands. If his epilepsy is managed well, and those around him know what to do when he has a seizure, life should be far less fearful for your little boy - who must be the most scared of all - and you, too.

Don’t yourself up; it’s not your fault. You are aware of all the obstacles that you need to tackle and it seems daunting. Though what comes through most strongly is your positive attitude to his condition; instead of feeling angry and questioning why, you want to learn how to cope - and are trying to get life back to normal. You are not there yet; but you will be.

Your friends and extended family don’t understand epilepsy. But they will do; you will make a good job of explaining it to them, I’m sure. Many of us are frightened when someone has a seizure because it makes us feel helpless. You can change that.

Education and communication are your tools. Use them. Read all you can, quiz doctors, pass on what you learn to everyone whose lives touch your son’s - and keep talking to him about all the thing he CAN do. He needs to know epilepsy does not control him. Also talk to people in whose footsteps you are walking - other parents of epileptic children. This is the very best way to decrease the sense of isolation you feel - and pick up tips on how to support your son.

Nik advises:

I think the first step needs to be addressing the isolation you’re all experiencing.

You’re lucky to have each other of course, but your son needs to spend time with other kids going through what he’s going through. And you and your husband would benefit hugely from speaking with other parents who’ve been where you are. Speak with your son’s medical advisers and ask for their recommendations of groups or forums you could try. According to Epilepsy Action Sheffield, there are nearly half a million people in the UK suffering with epilepsy so you’re not alone in your struggles.

And I think your instincts sound exactly right - walking a line between being cautious of your son’s condition, whilst resisting the urge to treat him too differently. This will get easier in time. My little sister was just two-years-old when she was diagnosed with diabetes and I remember how terrifying it seemed to my parents at the time - how would she cope with being different? How would their little toddler ever learn to inject herself before every meal and manage her blood sugars every day for the rest of her life? What if something happened to her when they weren’t around? It was so daunting.

The great news is that kids are very adaptable and your son’s young friends will likely take an interest in anything they can do to help and be aware of when spending time with him, without it changing the way they see him. My sister is 24 now and has had the most ordinary of childhoods. Her diabetes has never changed a thing and I feel certain you and your family can make this work too. Just give it time.

Sandra Howard, founder of the Fable Epilepsy Charity in Sheffield advises:

Yes - we can. You are not alone; Fable charity can support you in a number of ways. We offer one-to-one support at our head office on Bedford Street and we link patients and carers with others in a similar situation via our national patient support network. We have a patient support group which meets once every three weeks too and have just started staging coffee mornings our head office for parents of children with epilepsy.

This will give parents the opportunity to talk to others and give and receive first-hand advice.

For more information about our coffee morning and support group, or to find out about more help that we can give you, take a look at our website at www.fable.org.uk, email sarah-fable@btconnect.com or call our freephone advice line on 0800 521629.

What would you advise? You can offer your own words of wisdom. Send your 200-word answer to this week’s problem. We’ll publish the best next week. Write to jo.davison@thestar.co.uk (include A Problem Shared in the notes field and add your name, age, occupation and area of

Sheffield you live in).