Coping with a traumatic event - some advice please?

[onlyhereforadvice]

Last week my wife collapsed and had a seizure in front myself and our 3 1/2 yo Daughter whilst we were at Tescos
AS this is her second seizure (first was 10 months ago) , they think this is some form of epilepsy
This is a new medical condition which are going to have to deal with as a family, and it's not helped as wife is 37 weeks pregnant -
now putting aside all the medical concerns I have and the fact they have put her on some god awful medication (which has completely knocked her for 6, and obviously have implications on fetal well being, birth and breast-feeding)

At the moment I am looking for some advice on how to help my daughter cope with this, as she is pushing her mum away, not sleeping well and very clingy to me. Which again is very upsetting for mum also!

Obviously I am giving her lots of love at the moment and my work are very flexible and I can work from home if needs be but of course I will be taking some time off soon for the arrival of number 2 so I cant be there all the time.

..oh and we have just moved house and moved my daughter to a new nursery! -but I have to say she has dealt with this very well.

She is such a happy, outgoing little girl and just concerned this will knock her confidence and want to her know that mummy is ok.

On the plus side - she doesn't want to go back to tescos!

Actually any advice would be welcome on any aspect - i.e help daughter cope with seeing her mum fit, dealing with epilepsy, how I can best help my wife...

A stressed out and worried dad, husband and dad-to-be!

Oh you poor thing, your wife and your poor DD, that must have been very stressful for all of you!

My grandfather had epilepsy and we regularly saw him fit, it was always a scary experience as a child. I would recommend visiting the epilepsy Foundation website as they have lots of practical advice on dealing with the condition. They also do great books for kids - old.epilepsyfoundation.org/local/efneny/books.cfm sorry if link doesn't work am on my phone!

I would sit down as a family and talk through it in a matter of fact way. My dad had the conversation with myself and my DB when we were small after seeing Grandad fit for the first time. It was good to know why it happened and what to expect if it happened again.

I think your little girl felt totally out of control as it was a new and obviously scary experience for her, especially being in such a public place - no doubt other people got involved too.

She'll need reassurance her that mummy will be OK but sometimes feels very poorly and can have a fit. I'll try and get some more info for you when I'm not on my phone - but please have a look at the website, it's really great.

Oh how scary for you all.

I have epilepsy. I had encephalitis when DD was about 8m and was diagnosed with epilepsy quite a long time later but I think I'd probably been having seizures all the time, I just didn't know what was going on. I have complex partial seizures, so they don't cause me to collapse. I lose awareness, speak and act strangely for 30s or so and then come round and look really dazed.

They are fairly well controlled with medication. I agree the first few weeks/months on meds are grim but they helped me massively after than. On the risks to the pregnancy, at least your wife is already far along. I don't know what information you were given, but the greatest risks to fetal development are obviously in the first trimester. And I assume they'll have started her on one of the drugs with the best safety record in pregnancy - some of them now have no known risks over the baseline risk of having epilepsy in pregnancy. So whilst you wouldn't want this, the absolute risks to your new baby are probably very small indeed and the drugs probably make both your wife and baby safer than risking seizures.

It is different for us, my DD has really only known me as someone who has seizures. The things which have helped are emphasising that seizures are very normal and actually completely safe. When she was about 2.5 she asked her Dad one day if I was having a bad dream and that was a perfect metaphor, because if she has a bad dream we tell her she is safe, it will stop soon and nothing bad ever happens for real just because you had a bad dream. So we agreed. Seizures are like bad dreams, they look scary, but they always stop and they don't really hurt.

It seems to have worked, she seems very unfazed by them. If I have a complex partial now (which only happens if I'm ill for some other reason and that affects how my meds work) she waits patiently and then when it stops she tells me I need to have a rest.

Nothing dangerous has ever happened to us out and about, even when I had no seizure control and was having a lot of seizures every day. I did feel very ill so it was rough on me but DD was fine.

I think having a confident Dad made a huge difference. Children take their cues from you so if you treat it as something a bit boring and try to get on with leading the same life around it they'll treat it as part of the wallpaper too. Which now, roughly 2 years after diagnosis and 3 years after I first became ill, is how I feel about my epilepsy. But it does take a while to get there. .

God that must have been terrifying for all of you. I also suffer from fits so I can't be left alone with my 6 month old, can't bathe/swim/carry him upstairs etc etc.

Firstly I'll say that tonic clonic seizures (the fall to the floor and shake ones) don't have much of an impact apart from feeling very tired afterwards. There's no awareness during so although it looks horrible and probably horrid noises are being made and she looks like she's struggling to breathe, she'll be aware of nothing. The worst thing is if you're standing and just collapse like someone took out your plug! Just bang, down you go. Happened to me in Morrisons the other week and cut my chin open.

When they happen all you can do is protect her head and wait for it to stop. Talk to your child of she's there just reassuring her that Mummy is ok. The bad dream analysis further up is perfect.

If you ever want any first hand advice or info from anyone I'm more than happy to oblige. It sounds like you're a very loving and supportive family. Your little girl will be Ok, but apparently watching someone you love having a seizure is one of the scariest things (according to my best friend and husband).

It'll be Ok. The medication is horrible Unfortunately, I've not found one I can take yet without being a zombie or incredibly ill.

It will be alright though. My fits are exacerbated by hormones so it may be the same for your wife. During pregnancy I had 5 or 6 over a few days (normally happened at that time of the month) then nothing until a nasty one at 39 weeks where they kept me in hospital til I gave birth.

They're horrible and scary, but as someone else said not harmful in themselves.

Thank you so much for the advice - and reassurance.
It was the first time I had seen my wife like this - and yes it is one of the most scariest things I have seen, so I can only imagine how my DD felt!

We are seeing the consultant tomorrow to discuss the birth etc. and I have to say the good old NHS have been excellent.

I am trying to keep everything as normal as possible for my DD, but she is a thinker and I know it's on her mind.(never-mind my own!)
I will definitely use the bad-dream analogy,thank you.

Probably not the right forum for this question but do the side effects get better with time?
Although we are just focusing on making sure no.2 arrives safe and sound, looking after a new-born is tough enough without already feeling like a zombie (again good analogy).

We are a happy little family and will deal with it together , but it doesn't stop me quietly worrying about it all, like everyone I just want my family to be OK.

For most people the side effects get better with time. One of the reasons for introducing the dose slowly at first is to give the brain time to adjust to the very powerful chemicals you are taking. Once you have reached a therapeutic dose and stabilised it is usual for the side effects to calm down. I take the max dose of one AED and a high dose of another and notice no side effects at all and have not for a long time.

Having said that some people are more sensitive to drugs than others - and certain drugs just don't work out, I'm allergic to two AEDs. So it is important to monitor side-effects closely and if they do not diminish, or get significantly worse at any time or not what you have been warned to expect by the doctor prescribing them then seek medical advice. I think some people, especially people with good seizure control who are anxious to recover their driving license, end up tolerating 'good-enough' medication which leaves them feeling sedated or depressed, when adjusting dose or switching to another drug might make them feel significantly better.

I also have epilepsy (fall to the ground and all that jazz). I have 5 y/o twins but have never had a seizure in front of them. I love the bad dream idea and will use this one for them.

I did have a seizure at my cub group and made sure I came back to the meeting the week after and told them it was like your brain had taken on too much information and needed re-booting. Also using the calm pool then dropping in a pebble is a good example to physically show older kids how your brain waves work, get mucked up, and go back to calm.

I was pregnant on dangerous drugs (bad birth abnormalities, although the stupid neuro failed to tell me this) at the time. I spoke to a breast feeding lady at the hospital and she told me, yes, the babies could be slightly more drowsy but they had fed from my bloods invitro and the % of anti-eps in breast milk was lower than that.

I have been seizure free for a long time. They changed my meds 18 months ago and I was kacking it as I thought I was doomed to have another fit. After a few weeks of feeling rough, I am fit free and have no side effects.

Could you give your daughter a job for when your wife has a fit - like get a bottle of water from the fridge or her handbag. Something safe that will make her feel important and then when she's older she can tell her friends that she helps her mummy when she is poorly by doing this, thereby making the whole seizure thing less scary and more boring/run of the mill. You can then deal with the 'more important' aspect of keeping your wife safe.

I hope I'm not talking poop. I forget what it's like to have little 'uns.