ds2 just out of hospital after having being diagnosed with epilepsy (tonic clonic seizures)

[mummypig]

hi, just wanted to chat really as feeling a bit sad about this all. Ds2 has already been through a lot having had severe reflux and on drugs for that until 2 yo, plus had heart failure due to pericarditis at about 7 months old...

...then last Friday he started having seizures and we've just brought him out of hospital having had 7 'tonic-clonic' seizures in the past 7 days and quite a few little myoclonic ones.

I know that once he's receiving the right medication at the right dose, it should all be under control. I grew up with an adopted sister who had very similar seizures, and although they could sometimes be scary I know it didn't really affect our lives very much (at least, far less than many other things about her) and in fact she went about 10 years with no seizures at all.

It's just hard going through this as a parent, with no reason why he's started having them, and knowing that not only will they be unlikely to find any reason, it will also be a while before they've managed to ramp up the drugs to get them to the right level to control the seizures.

Dp and I have been spending the last week watching him like hawks and trying not to let him do stupid things like his usual stunt-man-like climbing on or hanging off everything and anything. Plus most of the seizures have started when he's tired or has just woken up, mainly in the middle of the night or early morning, so we're not sleeping very much cos we're worrying about him having another one. And the medics have sent us home because there's not much they can do either, apart from wait...

He's currently on a very low dose of Epilim (Na valproate) plus clobazam - I'm relieved they've put him on this because it will take about two weeks to ramp up the Epilim to the dose they currently reckon will keep the seizures under control.

I'm sure several of you must have been in this position before, any reassuring noises are appreciated!

So sorry that you are going through this, mummypig. I have no experience or advice so can't help at all but didn't want this to drop out of active convos.

I'm sure someone more useful will be along shortly.

Hi Mummypig, I have a 3 year old son who has epilepsy he started having seizures at 15 months old and was diagnosed at 18 months old. He also has clonic tonic seizures and absence seizures.
My son was started on Tegretol which wasn't controlling the seizures so was started on epilim and that has been much better although he does still have seizures they are no where near as bad he has one seizure every 2-3 months rather than a cluster of 2-11 every 4 weeks.
We found it very hard to start with like you said why has it happened. It does get easier.
Have you started a seizure diary this was one bit of advice I got which has been invaulable. I write date, time, length of seizure and all symptoms, if he is unwell,tired, what he was doing immediately before and how long it takes to recover and length of sleep after.
Have been on the national society for epilepsy website they have a great forum for parents I have learnt a great deal from there.

Hi snowybun, thanks for your reply. One seizure every few months sounds very manageable. I hope ds2's get down to that frequency. He had another this morning just after midnight - it's so hard to sleep knowing he might have one any moment.

I have started a seizure diary - I'm a scientist by training so it's automatically my response to take notes when anything out of the ordinary happens! It's funny though that the doctors in the hospital didn't seem to make use of it. Although I told the doctors many times when his seizures had been, and they must have been in his hospital notes, each time a doctor came to see him they seemed unaware of the frequency of his seizures. They also didn't seem to take much notice of the myoclonic seizures while he was in hospital - they weren't noting them down on his chart - although just before he was discharged a doctor said they were the reason he was admitted the second time (he had about 20 myoclonic seizures one afternoon and we just felt he was about to have a tonic-clonic any moment).

I feel that the doctors obviously consider they have covered all the medical issues, but haven't done much to address our emotional states as parents going through what to us is a completely new situation. I really think I need to talk to other parents in the same situation, otherwise it feels like we've been left in limbo. I have had a brief look on the NSE forum but can't post anything as they aren't verifying new memberships until after the New Year. So I'll just spend a little while browsing the forum and might call the helpline if it's still open.

Thanks again for your response

bumping again for any morning parents. both kids watching the Snowman at the mo so all calm in our house!

Hi Mummypig

Second advice to check out the charities - British Epilepsy Association (now under a new name I forget but google will find 'em) a really good source of info and support.

I have sleep epilepsy - and if you are going to have epilepsy I think it's the 'best' sort to have. Might sound odd but at least you are largely safely tucked up in bed when it happens! So far less risk of hurting yourself or being embarrassed in public. Hopefully they will titrate the dose and get seizures under control, anyway.

Has ds seen a paediatric neurologist? I would really push for this. Paediatricians are fine but obv. a PN is the real specialist here.

I can't help with children's stuff as my epilepsy came out of the blue when I was 29. But it might help to know that my seizures are perfectly controlled - they found the right dose very quickly and I've been fine ever since. You are probably aware given your scientific background that anti-epileptics can slow down your thinking while your brain adjusts - that's why they titrate up very carefully. But you do adjust, it will be fine!

With sleep epilepsy, and I think epilepsy generally, getting a good night's sleep is important - tiredness is definitely a risk factor for seizures.

Like your sister, it doesn't really affect my life. No-one would ever know if I didn't tell them. And I've gone on to gain professional qualifications, have a good career and a family etc. etc. etc.

Hope ds does very well.

Oh, people do grow out of it, btw, hopefully ds will be one of them.

thanks edam, I have spent a lot of this morning on the NSE website and there's a lot of useful info there. I also noticed lots of parents on the forum discussing their children's bad behaviour, which ds2 has definitely been exhibiting over the last week! Hard to tell at this stage if it is a reaction to the whole situation, sleep deprivation, side effects of the Na valproate, or something else connected to the epilepsy. I'm just hoping it will pass, I can't imagine his nursery teacher being tolerant of the way he's been behaving.

Yes, I am keeping my fingers crossed that they get the right dose to keep the seizures under control. I just have to get through the next couple of weeks first.

good luck. My dd had infantile spasms as a baby and then developed TC's and complex partials and status seizures. Epilim didn't help at all and she's on vigabatrin and lamotrigine and just finshed a course of steroids. Touch wood, SF for 5 months now. She's 3.
You do watch like a hawk for any 'weird' movements! Sometimes if dd zones out I panic its absence seizures or that she is having sub-clinicals that are affecting her brain but we can't see them (she has had them in the past).
Epilepsy is a zillion times worse than her cerebral palsy to me.

The nursery will be understanding as epilepsy is counted as a 'special need'. Did you know you qualify for DLA now?
Come on over to the SN section of MN.

Glad to hear your lo has been seizure free for a while, 'needmorecoffee'. thanks for the info about DLA, I guess it depends how severe his epilepsy is tho? anyway, coming over to SN to discuss the nursery teacher!!

Doesn't matter how severe the epilepsy is. He has it therefore he requires extra attention to a child of the same age. Thats the definition of DLA. But you'd need some form filling advice as its bleedin' awful.