Looking for advice on how to explain this to my DS

[WannaBeAWarhol]

I've never posted on here before and not sure if this is the right place but I would appreciate some help with this. My 6 (nearly 7) year old DS has been having absence seizures for the past few months. A couple of weeks before Christmas he had an EEG which confirmed epilepsy but they wanted to check it thoroughly through before deciding what the next step would be for him.

Today I got a phone call from the hospital to say that his seizures r coming from one specific point in the brain so he needs a brain scan to see what the problem there is but it's pointing towards some form of scarring or possibly something more sinister. I'm really really shaken up and honestly didn't see this coming but obviously have everything crossed (and every hope) that it is not something more sinister.

I haven't told him anything yet. He doesn't know about the epilepsy, I wanted to wait till we had some concrete answers so I could explain it to him properly. They want to start him on medication straight away so I'm obviously going to have to explain it to him now and also tell him about the brain scan which they think he'll need to be put to sleep for.

I suppose I'm just looking for a hand hold and for some advice on what exactly to say to him. Also any advice if anyone has been through this with their child.

Anyone?

Hi, I don't really have any first hand advice, but have epileptic children whilst I was teaching.

They explained it to me (age 7-8) as 'your brain makes little lightning bolts which make things happen. Mine sometimes go wrong'

It was basic but it helped the other children understand why he would have seizures and that it was his brain having a 'lightning storm'.

I hope you get some answers soon.

I'm afraid I don't have any useful experience. But I do have a useful hand to hold.

I'm sorry you're going through such a worrying time, but pleased and relieved that you're getting the medical attention your son needs. Whenever someone I care about has a health scare like this I remind myself that, should the news not be wholly positive ( i.e. literally nothing wrong) there's never been a better time to be sick.

In terms of how to talk to DS about it, I'd focus entirely on what is known (he has epilepsy) and what needs to happen next rather than potential causes or prognoses. There are some very straight forward answers to questions he may have about epilepsy here: www.epilepsy.org.uk/info/newly-diagnosed

Thank you, I really appreciate the responses. That's a really good way of putting it. He is very young for his age and his concentration and memory are really bad (part of his condition I suppose) so a simple, easy explanation like that would work for him.

I'm glad it is at least of some comfort, I totally agree that you need to focus on telling him what is known.

As always with times like these your own health is important too, but can be overlooked. Be kind to yourself, ask for help and get the practical things taken care of if you can (cleaners etc if needs be). Reduce your other stresses in other words. This is not the time to worry about healthy eating etc. A few extra takeouts won't do any harm!

Thank you. I've had the dreaded sickness bug today with 2 year old DS2 at home so the phone call couldn't have come on a worse day n I'm definitely more emotional cos of that I think.