Gelastic epilepsy

Hi, so my son has had seizures since he was 5 week old. He has now been diagnosed with gelastic epilepsy at 13 month old and isn’t progressing well at all. I just feel alone with it like no one understands because it’s so rare. Hoping to find out some more information and other stories to help me. He has all types of seizures daily, it’s definitely been a hard journey so far. I grieve the experience everyone else has as a first time mum compared to what we have had and watching my son suffer is heartbreaking
Kennedy x

Hi Kennedy,

I’m so sorry to hear about what you and your little one are going through. It’s really scary as a parent to experience this and I can imagine you must feel quite isolated and overwhelmed, so I think it’s great that you are looking to speak to other parents who are going through the same thing.

Firstly, have you looked into Facebook groups for Gelastic seizures/ rare epilepsies? Sometimes there are some great groups out there for things like this that are open to users worldwide, and as this is a rare type of epilepsy, it might increase your chances of connecting with a parent and child going through the exact same thing.

We also recently uploaded some content on rare epilepsies on The Channel, and although Gelastic epilepsy specifically isn’t on there, you might find some useful information there or some reassurance that you aren’t alone: A Spotlight on Rare Epilepsies | The Channel

Do you think you might benefit from joining virtual/ face-to-face support groups for parents? This is a service we do not offer as it stands, but it is something we are looking to bring in, in the near future, as we realise how important this is would love to be able to help.

Until then, it might be worth having a look at Epilepsy Action (link below), as I know they offer various forms of both virtual and f2f support groups for parents. Scroll down to ‘Support for you’ to see what options there are.

Epilepsy Action: Home - Epilepsy Action

Let me know if any of this helps. If there is anything else we can support you with in the future, please don’t hesitate to get in touch. :slight_smile:


Hi Kennedy,
i have suffered with gelastic epilepsy since I was 7 years old, I am now 22. Going through this is difficult for both child and parent. If you need to ask me anything please do I have many years experience with this kind of epilepsy it is a rare type so anything you need to know please let me know and hopefully I can shed some light on this for you.

Georgia x

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hey how are you hope your ok

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Hi Matthew,

I am well thank you, taking everyday as it comes

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that’s good same here are you excited for Christmas and how’s your seizures been recently