To ask you your coping methods if your child is prone to seizures or something similar to this

[Munrow]

Hello,

It's been a shit evening because my daughter had a seizure whilst on the stairs. Our stairs are very high, and are blocks of wood. Heavy, slippery and unforgiving.

And as she was going up, she hit her chin, which causes her body to seize up, go completely rigid, vibrate, teeth clench, eyes roll back, unconscious and stop responding.

They say she'll eventually grow out of it.

If you have a child who suffers from seizures or anything similar can I ask you, how do you cope?

How do you stay strong? When it's happening how do you not panic? How do you think straight? How do you handle the situation?

In terms of the emotional aspect ... how does it make you feel? How do you get over it? How do you not just want to wrap them up in cotton wool to keep them safe forever?

I'm really struggling tonight because usually I'm there when they happen. So I know how to handle it and what to do.

Tonight, she was with her dad when it happened. As soon as I heard him shout for me I did run up, but I completely lost control of my emotions. It feels heavy.

I want to know what happened but I can't bring myself to ask him what happened exactly. All I know is that he grabbed her by the legs as she went down three heavy fucking steps.

She's fine now. Happy as Larry. Grandad came to visit with cousin. Bouncing everywhere and even got to go to bed later than usual.

Do you have the feeling of why them and not me? I mean it's a useless feeling but I feel it. It's useless because it is her and not me.

I'm just struggling with it tonight and on edge.

Please can anyone share any coping method? Please? Thank you.

Has she been formally diagnosed?

My son (14) has generalised epilepsy, he has few tonic-clinic seizures (as you've just described with your ds) but has more absences (looks like he's day dreaming but he is unconscious for 20-40 seconds).

He's on sodium valproate twice daily to control the seizures.

Quite frankly, the large seizures are terrifying, but we just make sure he's safe, and let him come-to on his own. We time them as any over 5 mins are a potential emergency.

The main problem we have is that he's losing lots of school work, as he's exhausted even after only having absence seizures. Plus he's missing small chunks of lesson time and it's not obvious to the teacher it's happening. He doesn't even have any recollection of them either!

Sorry I mean your dd!

I'm always worrying about him, I don't think that ever changes. I feel more sad about his future. He wanted to go into the RAF, but he cannot join any of the forces, nor can he do a fair few other jobs.

Speak to your local epilepsy nurses, ours (attached to our local hospital and his paediatrician) have been amazing. They've even gone into school to help them understand how he is etc etc. And they are normally just a phone call away.

I'm sorry I don't think I've answered your question!

It feels like a sickening feeling, I feel so sad about it and I was a bit angry as it's not fair. But, I think we've all accepted it now. It's pretty gut wrenching though so I know how you feel.

Maybe someone who's had more experience can help, but one thing I've learned from mumsnet, there's always someone here that can hold your hand. You are not alone 💐

Hi Fernweh

Like you have just described, it lasts less than a minute.

Gut wrenching is exactly what I would say too and I feel worried for her all the time.

She loves gymnastics and just doing everything which would potentially trigger a seizure. Does your son understand why he cannot join the RAF? Or why he has to be careful about the job or career he chooses? My DD doesn't understand things like that just yet so is constantly frustrated when I often put a stop to certain activities. Even soft play has us on edge.

She's been on the waiting list to see a specialist with the NHS.

When they first happened, she had three within the space of two weeks and because she was so little we had no idea what was going on and the doctors were constantly questioning us because she seemed absolutely fine in herself after 15 mins or so.

Then they happened again six months later. Two within a week. Then another two and then one and then today.

They said she will grow out of it and I'm clinging onto that. They've described it as a seizure but won't get a proper diagnosis until we see the specialist.

She doesn't have any recollection of it either. Just that she was on the stairs and hit her knee. And then got to watch something daddy's phone after. Doesn't remember anything that happened in between and too young to describe anything that makes sense or gives us an idea of what's going on.

I just feel sad right now. And I'm sorry about your son. It really isn't fair. X

If it helps, from what you've said, your little girl sounds very like me. Had my first after the measles vaccination because my DM had me wrapped in thousand layers and that combined with the vaccination caused my temperature to sky rocket.

I went on to have a load more in quite quick succession with no obvious trigger. Spent some time in hospital, had scans and was prescribed sodium valproate which I took until I was five and a half. Came off it and have been seizure free ever since (I'm now 40).

If she does grow out of them one thing to bear in mind is that they can run in families. I was really worried when my ds had his vaccinations/had a temperature but he's been fine.

Hi, has anyone suggested/ mentioned Reflex Anoxic Seizures (RAS) to you - what you have described sounds very much like what my daughter used to experience.

Have a look at www.heartrhythmalliance.org/stars/uk/reflex-anoxic-seizures with more information and "case studies" . If you contact the organisation they are so helpful to chat to.

I've been fortunate (!) enough to have two children with seizures. Eldest with epilepsy and youngest with anoxic shock seizures. I can honestly say that I have not coped well at all. Other people don't understand what it is like to live with stuff like that all.the.time. Eventually I got counselling via my GP to help with the constant anxiety. I am really sorry you're going through this.

Btw, if your child does have reflex anoxic seizures, you can bring them out of it if you catch them quickly enough. Blow in their face repeatedly and call their name in an excited voice.Even splash them with cold water. Nothing will work if they are epileptic though.

Epileptic here. Diagnosed with absences at ten, told I would grow out of it and then developed tonic-clonic seizures at seventeen. The best thing I ever did was to identify my triggers and then avoid them. So for me it's stress, lack of sleep and alcohol that tends to trigger them so I've done stress management, built up a good sleep routine and only drink in moderation. Also, taking medication at the same time every day helped and at first keeping a seizure diary to establish any patterns. The epilepsy nurse will be very honest about careers and hobbies and driving with her but they're very good. Make sure she has medical ID as well. Mine's on my phone.

I second anoxic reflex seizures. I had twin girls in my class with them. My second daughter also had febrile convulsions, and an odd form where she wouldn't lose consciousness. It was tough, but she's fine now. Sending love x