Epilepsy

[fattybumbum]

On Christmas Eve DS1 (aged 4) and I were returning from the local shops, walking happily through the snow when he suddenly let out two screams of (sounded like pain) and collapsed on the snow unconscious, with his eyes rolling back in his head and his arms twitching. A man walking past called an ambulance for us and wrapped his coat round DS until the ambulance arrived. He also kindly went to our house and told my DH where we were.

Anway, he was given the 'all clear' by A&E and sent home (thankfully) but we have been warned to watch out for further seizures. This means that we were on hyper alert today especially as he seemed a bit as if his head was lolling down and then jerking back up (IYSWIM) in a weird way. So that was our xmas day with a small baby to look after and not able to leave our son for one second. I have been crying off and on all day as I am worried sick about him.

By the way, the background info behind my story is that he had been having strange 'jerks' and eye rolling in his sleep since he was 18 weeks but has been given the all clear by 3 consultants (inc an epileptic specialist only 2 months ago). He has had an EEG, an ECG, an MRI and his urine/temp checked. No one can see anything wrong with him. Until yesterday I have not been quite so worried about the night seizures as he couldn't come to any harm in bed.

This latest episode paints everything in a totally different light. I am absolutely devestated. I am so worried about my gorgeous funny bright little boy. I am guessing that they will put him on meds.Please tell me everything is going to be ok. If anyone out there has a child with epilepsy, please tell me that it is possible to lead a normal life with this condition. I can't bear for anything to go wrong for him. I love him so much.sad

Fattybumbum, yes its possible. You have had an awful experience and are totally, understandably worried, I would be too. But To answer the one question that I can Yes it is possible.

To add one thing, I was once told by a leading neurologist that seizures do not cause pain, he was very categoric about that.

If You son felt pain then...??? I don't know. It could be something else - I have no Idea, But I'm sending you a very unmumsnetty (((((HUG)))) and I really hope I haven't worried you more.

Hi, thanks for your reply. I don't know if he felt pain, that's just how the screams sounded to me. When I asked himafterwards, he had no recollection of pain so I've no idea what that was all about. I think it cannot be anything really bad as his MRI scan etc were all fine.

Hold that thought For what its worth I agree with you. Please remember too that lots of children completly outgrow seizures, and that they are far more common than most people will admit. Afaik a child has to have more than a certain number of seizures before they classify them as epileptic because its so common for children to have 2/3 and then nothing ever again.

Keeping everything crossed for you and your ds, x

I agree, as your DS is not yet 5yo. After that it does get a little less likely that he will grow out of them, but through personal experience (have epilepsy myself, as does my 11yo DD), it isn't the end of the world, it just feels like it at the time of diagnosis. I was diagnosed 6 years ago, and my DD was dxd nearly 2 years ago. I think her dxs hit me worse, as I felt like it was all my fault. (genetic type of epilepsy that is VV rare and hadn't been linked with my cousin's epilepsy, or my Nan's epilepsy). However, 2 yrs/6yrs on, we are doing reasonably well, my DD goes to a MS secondary school, I am coping OK with my 3 DC's, and have come to terms with the fact that I'll never get to drive an underground tube train.....

Hi fattybumbum. You'll find lots of support on here for children with epilepsy as there's quite a lot of us!! DS (6) has epilepsy and has been having seizures since he was 2.5. They can't find where they are starting from so he isn't under control despite 4 medicines after all this time.

DS does lead a normal life! He is in MS school and although he sometimes has seizures during the day, these tend to be as he wakes up so they don't happen at school. He is having difficulties with his memory, concentration etc but who knows if that is due to the epilepsy, the medication or if it would have been a problem anyway.

It took me ages to relax after he started having seizures. He has most of them in his sleep and for months I wouldn't go in if I could hear him but instead would scream at DH to go and see him

DS will often scream during one of his seizure types (whole load of different types going on with him!) and afterwards often has a violent headache.

Try and stay calm and enjoy your Boxing Day!

Hi there, hope things have been OK.

My dd1 has epilepsy, mainly complex partial seizures where she often does not lose consciousness totally, and the very occasional tonic clonic seizure.

She takes Epilim twice daily. We tried Tegretol but it was not good for dd, and another med that I forgotten the name of now which also did not work well for dd.

Hi FattyB;
so sorry to hear about your DS and his frightening episode... I know what's it's like too, and it is very frightening especially the first time.

There are plenty of parents on here with more experience than me, and they've been a great support to me over the last year ... I hope you can feel supported too.

Your DS may not go on to develop frequent seizures; try not to worry, but do keep a diary, and you may find you can spot when they're coming... my DS has them when he's very tired or sick, just before he runs around the house like a crazy thing, really happy and lively - I call it bouncing off the walls - and that's a sign he might have a fit later. But in our case he's only ever has about 6 big fits so far. In our case, it doesn't really affect us much at all.

Learn all you can about it, how to recognise a fit, what to do... how to resuscitate if necessary. Have a look at the epilepsy action website for info www.epilepsy.org.uk

If your DS has fits in bed, then it's possible to get an alarm from muir maxwell trust which will go off if he has a 'flapping' fit in bed...after 7 seconds of continuous extreme movement... but it's not much use if the fits just involve rolling eyes...

sounds macabre, but try to get a video of a fit if you want to explain it to the doctor... you can bet your house DS will never have one when the doc is watching!