Epilepsy (long)

[fattybumbum]

More of a WWYD really but really need some outside help on this one.

I posted recently that DS1 (aged 4) collapsed, with his eyes rolled up and fixed, and had a seizure (around noon) on the road outside our home on Christmas Eve. There was no underlying health reason for this seizure. (We called 999 and took him to A&E)

However, this is after 4 years of similar nighttime 'episodes' (about once every 3 nights) which have been dismissed by 2 consultants as nothing.

The third consultant (an actual Epilepsy one this time) we saw last year actually took time to test him (EEG, MRI and two ECGs) which all came back normal. He also saw footage of DS seizuring and agreed that it was something but felt that it would be more harmful than beneficial to label him as epileptic at that point. His reasons being that DS is bright, tall and physically healthy plus the seizures were only nocturnal so therefore unlikely to be harmful and they are in themselves very brief. They tend to be over in 10-15 seconds.DS has never hurt himself and just goes back to sleep afterwards.

The consultant made a routine appointment for next Nov and told us we didn't have anything to worry about.

Now this new daytime seizure has happened, we are really upset. It was totally identical to the night ones so clearly is epilepsy of some sort. I have cried every day since it happened. It totally changes things as a daytime seizure can be really dangerous.

I imagine that we will be offered the chance to medicate our son to try to prevent further seizures. Remember this is not really a first seizure but more like a 400th - it's just that this one happened during the day.

It seems like medicating is down to the parents ultimately in cases like this. If we medicate, it will stop him hurting himself if he blacks out during the day again but then there is the risk of side effects from the drugs. DS will be starting school in Sept. I hate the thought of him hurting himself and coming round in a strange new environment but is it worth drugging him for?

If anyone's child has (I suppose I could say mild) epilepsy, with no other health issues, could you tell me what you have chosen to do in these circumstances.

I was going to post on an epilepsy forum but then thought that probably the people who go on those type of forums are people whose kids are having problems. I am assuming that there are people out there who have made this type of decision for their child and then are merrily getting on with their lives.

Any help/advice would be gratefully appreciated. as you can imagine, this is a hideous decision to have to make and we are extremely upset.

I hope that no one will be annoyed if I cut and paste this into a couple of different places on Mumsnet. I really need some help with this and cannot stop crying.

Ahhh hun couldn't read and run. I dont post often but felt I had to in this case. My hubby has epilepsy (so slightly different to your situation) but I know how scary and worrying it can be. Unfortunalty it is one of those decisions you will have to make yourself with regards to medication. It will take time to not only find the correct medication for your LO but also the right amount. We finally (fingers crossed) think we have hubby's medication sorted after many years.

What have to specialist suggested? Do get advice on the various epilepsy forums as they can help.

I would post on an epilepsy forum too, despite your misgivings - people are bound to have a lot of insights about treatment options and likely outcomes. If I had a child with a health condition, I think I'd look at/post on specialist forums even if I didn't find it a big problem in daily life.

I'm sorry you're having a difficult time. I hope you get some helpful advice soon.

i urge you to contact Epilepsy Action and NSE (both have websites) they were extremely helpful to me when i was diagnosed many years ago.

sorry this is brief i am just off out, but didnt want to reead and run. i am not on medication at all, have not been for many years even when my epilepsy was very active. i had excellent advice from a renowned consultant who in a nutshell told me to make up my own mind as to seizures versus risk versus sid effects. i did take medication for a long time, all different ones (takes time to find the right drug and right dose for each individual). eventually found te correct drug for me and dosage, but decided eventually to come off them.

despite all this, me knee jerk reaction to you and your situation would be to put my son on the drugs. you have a good long while to get his drug and then dosage correct so that he is settled befoer he starts school. he will then be relatively protcted from seizures at school and able to join in with all sports and activities freely without fear from you, him or the school or his new friends. you cn then review this decision in time, dont forget he is HIGHLY likely to outgrow this during adolescence (mine started as an adult so is different, children tend to outgrow this). Also major thing with epilepsy is to remember that "seziures beget seizures" so the more he has the more propensity for the brain to continue. Another reason perhaps to medicate now. it doesnt mean forever. you may want to withdraw at 15 or 16 say and then he is fit to try for driving lessons etc.

def speak to support groups above and educate yourself about this condition (sorry i dont mean that as patronising as it sounds - hut really, i have had to learn a lot more about this than any of the GPs i have had).

lastly - the night time seizures were the worst for me in terms of exhausation and headaches. i was other wayround and had daytime tonic clonic seizures first. took a long time of having night time ones befoer any of us realised that's what they were. i was exhausted to the bone and had headaches that pethidine could not touch.

sorry, i said this ould be short really must run now so sorry for typos and please, dont worry so much i know it must feel devastating right now but you all just need to adjust a little and all will be well. should also opoint out that even though i have epilepsy, i still had planned homebirth with first dc. Also drive and so on. take care x

Have you posted on the special needs boards? There are many parents there who have children with epilepsy.

I've no experience with a child who had epilepsy but my mother developed epilepsy last year, dinurnal seizures only consisting of grand mals,partial complex and partial simples and it was the most hellish experience for her and for her family.

I can understand your concerns about medication but I don't believe that I'd hesitate to medicate my child as it's such a terrible debilitating condition, or at least that's been my experience of it.

Having to go to A&E every time my mother had a seizure was both draining and terrifying. And I was always worried that she'd go into status epilepticus and not come out of it when she had her grand mals/tonic clonics.

The 'lesser' seizures,those being simple partials and simple complex seizures were also very hard for her. She felt sensations that she couldn't describe, felt very ill and was extremely distressed when they ocurred.

It got to the point where she couldn't go out alone as she was so confused and disorientated having had a number of grand mals and numerous partials. She could barely function.

She was put on medication i.e Lamotrigine/Lamicatal and the dose was slowly increased.
She's on 200 mg now and what a difference it has made to her. She's like a completely different person and has had no grand mal seizures since being on 100 mg and no seizures at all since 150mg.

She does still occasionally suffer from deja vu but it's infrequent and causes no real issues and should hopefully not be an issue if her meds are increased to 250-300 mg.

I'm not trying to scare you and epilepsy is different for everyone but I do think that medication is worth trying at least.

It can take a long time for some to find the right dose and right medication,and a certain percentage never get there. We were lucky in that the first medication we tried worked and that a relatively low dose was sufficient and it can be a long tiring battle to get there but I think that it's worth it.

And please do post on epilepsy forums. I posted on Coping with epilepsy when my mother began to have seizures and I received some very helpful advice.

I can't comment on Epilepsy Action but Epilepsy Scotland's helpline is wonderful. They have some excellent advice, and tips and were there if you just needed someone to talk to.
I'd imagine that Epilepsy Action offer a similar service.

I second Coping With Epilepsy as one of the better Epilepsy forums, I did post in SEN, but I'm crap and can't do links Technologically inept. Hope you are feeling a bit better, if you need someone to e-mail, hop over to SEN and I'll give details if you want to email me...Also Epilepsy Ation's forum4e but I haven't been on there for an eternity as I've changed computers and forgotten my log-in details.... told you I'm technologically inept!