Child with Epilepsy

[101Familyiseverything]

I don't really know how to start, so I'm just going to go for it.

My toddler has recently been diagnosed with epilepsy. His last seizure before his diagnosis was the worst one he'd had and the worst day of my life.

My Husband and I are at a loss, we don't know where to go or who to talk too about our feelings. MY toddler can't really tell us what's going on or how he feels (which is heart breaking).

Currently I have become one of those extremely worried parents where I'm panicking every time he has a hiccup. I'm annoying myself with how I've become. What makes it worse is my son who use to be extremely out going just wants to stay in and not go anywhere. He screams wherever we go. I'm constantly trying to reassure him that everything is ok. This could be a result of the medication he's on but only time will tell.

I know I'm over reacting but I'm petrified we are going to lose him. I know this is silly as epilepsy is very common. We just don't know enough about it. We are waiting to see the specialist which will hopefully help educate us. I feel like we are in limbo while waiting.

My post doesn't mean to sound in anyway arrogant I really am just extremely uneducated on the subject.

Does anyone know of any sites or self help groups or other forms of information that might help? I have looked at the NHS website and epilepsy society. I'm extremely open minded to anything. All advice welcome.

Many thanks.

I’ve got epilepsy and it’s not nice, I won’t sugar coat it. The epilepsy society are fab though and you could try calling their helpline. Also make sure you link in with your epilepsy nurse. Mine is far more knowledgeable than my GP and can prescribe certain meds. There may be a support group in your area which you could try.

There is a forum called Forum4E which I have found extremely helpful in the past (I have epilepsy). When I registered it took about a day to be accepted. You can ring or email Epilepsy Action for immediate advice and support.
It is a terrifying thing to witness, especially in someone so precious and so powerless, and I really understand how difficult and frightening it is to have to wait for your appointment. In terms of your son being reluctant to go out: when you have a major seizure it really takes it out of you: I tend to liken it to rebooting a computer; it takes a while for everything to reconnect properly in your brain, you can feel extremely confused and you can have physically hurt yourself - this may not necessarily be visible. So possibly in the immediate term he needs lots of rest and cuddles.
I would also have a look on Amazon for books that might explain some details- can’t recommend any I’m afraid, but that’s how I tend to process things.
I hope you find the best way through this difficult time 💜

Thank you both.

SuperMeerkat - Honesty is exactly what I'm looking for, so for this I am grateful. He's yet to be assigned an epilepsy nurse, this sounds like someone we can bombard with all our questions and concerns. The support group is what I am hoping to find; however, the one in our town is on rest.

SunnySomer - Thank you for sharing your term of experience; that's uplifting to know it might pass and that his little body is still recovering. I hadn't even considered that as a possibility.

I have mainly photosensitive epilepsy, and knew I had it since I was 7.

Having a seizure is scary especially for a young child who can't understand what's going on. And for those who witness it.
The best thing you can do is learn seizure first aid... what to do if your child has a seizure & also the recovery position & cpr.

The medication may have side effects but hopefully will help with seizure control.

I do have a Neurologist who specialises in epilepsy, & an epilepsy nurse who I can email or phone which is helpful.
I hope you can get access to the same kind of service.
I go to an epilepsy group which can be useful.

Hope you get on ok, pm if any questions x