I hope you are all safe and well. I wanted to connect with the room after being recommended to come on board through Epilepsy Action.
I am a Dad who has two wonderful lads (14 yrs and 17yrs). My eldest suffers with Epilepsy, he is a wonderful, funny, articulate young man who loves his sport and has a huge zest for life. He is a top, top chap in every way; but he is really suffering just now and I wonder whether there are any parents who have boys / girls of a similar age in the Midlands that might offer some kind words of wisdom?
My son suffered an horrific set of Tonic Clonic Seizures and ended up in crash and resuscitation for 9 hours at Heartland Hospital over Christmas and on Christmas Day. He seems to be really suffering with coming to terms with Epilepsy. He wants to do ‘all the normal things’ and I am trying to get him to see that he needs to self manage a little and accept the condition. In previous years his Epilepsy has been controlled so this has been a shock to myself my-ex wife and the wider family just now who are all really worried.
My son doesn’t know anyone with Epilepsy and I think it would be great for him to chat to similar aged people and maybe meet up in the future to share his feelings. I wonder if there is anyone out there that may want to do the same in the Midlands? I’m really happy to travel, meet parents, buy everyone lunch and maybe pay for bowling / pool or something amenable for parents and children with Epilepsy. Just to ensure that my lad doesn’t feel so alone.
As a parent you can do everything you can to support your child but in reality it is those that live with the condition that are probably more able to articulate how they manage and fulfill their hopes and dream living with the condition.
A bit about myself - I am a Director working in Health and Wellbeing so I am very much all about ensuring healthy lifestyle and if there is anything I can do to support the Group in any way please do message me back.
Thank you so much for reading this message and please do get back to me to chat.
With sincere regards
I’m very local to yourself. Unfortunately I can’t offer much in way of support as my daughter is a lot younger and suffering from absence epilepsy, but I wish you all the best in finding some support as it sounds like you’re going througn a rough time (like ourselves). I hope your son’s consultant is in regular touch and offering him the best care.
What a wonderful letter!
I too have 2 sons, the younger with epilepsy. Unfortunately we live in Pembrokeshire so are far away and my boys are 21 and 24 now. But I just wanted to say that we are going through the same kind of problem. I always worry about my boy feeling isolated. In spite of hours and hours of talking I never seem to be able to convince him that he needs to regulate himself (he is very sporty).
One thing that did help however was a bit of sideways thinking. I found a course in Art &Design, 1day a week for a year. Didn’t sound like much but that enabled him to qualify for an Access Course, then Foundation, now he has a place on a degree course. And he found like- minded buddies who are more patient with his other world ly ness. He left school with nothing !
Good luck !
You will find a way
It sounds like it has been a rather trying and worrying time. Hopefully you’ll now have the rescue medication as back up if a cluster of tonic clonics was to happen again. You sound to be in a similar field of work as myself which can either be a blessing ‘or’ a burden to our children.
I have a 14 year old son who is also experiencing a very similar experience to your son. The interesting thing that I have noticed is that my sons seizures started back up last October (around the time he started a high peak in puberty, same time every month he’ll have a seizure) after being seizure free and without medication for 5.5yrs. I insisted on the rescue medication purely because of the state of her NHS and having to wait long periods for an ambulance.
Just out of curiosity, does your son have any other diagnosis e.g. ASD? Research shows that there is a strong link between epilepsy and ASD, also hormones and epilepsy. We are Lancashire based so a bit of a commute.
Take care and keep on practicing self care
Thanks for sharing your son’s experience with us.
My son is 20 now and he had his first seizure at 17yo. We are based in Birmingham. I spoke to my son and he wish ton meet your son. He finishes his exams on 23 May and after that he can meet any day. Let me know if we can arrange the meet up.