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Original poster

Ds (aged 4) had what looked like a seizure last night...what do I do?

61 replies

Fillyjonk · 20/04/2008 16:07

I have seen adults having tonic-clonic (sp) seizures and this looked just the same, but smaller.

He was asleep in our bed (long story), he woke me up. I was half asleep but I think it lasted about a minute. He went back off afterwards.

When he was about 2 he was investigated quite thoroughly (EEG etc) because he seemed to be having absences.

I am hoping this is a one off but he has woken a few times with nosebleeds and its occured to me that this may be why. There isn't usually anyone with him at 10pm at night, except dd1 and she sleeps like a log.

I don't know wtf to do. I guess I make an appointment with the gp in the morning. I am so bloody about this, I don't know why. Am also very worried.

OP posts:

NorthernLurker · 25/04/2008 09:59

That'a very interesting post mummypig - I have a friend whose son has been having 'absences' - he has been put on several different meds none of which have cracked it and some of which have adversely affected him. Would you mind telling me what medication you son is on now? Don't say if you'd rather not.

Filly - I was in Boots yesterday and they were advertising some sort of hearing test service as well - from the poster it looked like it was aimed at all ages.

mummypig · 25/04/2008 13:52

Hi NorthernLurker, ds2 is on lamotrigine which is one of the newer anti-epileptics but is supposed to be good for myoclonic seizures. I don't know if it is known to work on absences or not but the NSE site might say. It does have to be introduced very slowly and every time ds2 has an increase he gets quite tired for a few days. He's on week 11 of the schedule (not at maintenance dose yet) and the seizures didn't stop until about week 6 so it doesn't work instantly. I'm also a little concerned that his current dose is giving him some bowel incontinence although the neuro thinks the dose is not high enough to affect him like that. But it's been worth it to not have to watch him like a hawk all the time! In the previous months he always had a bruise on his head from all his falls, and I didn't take him to any playgrounds or even soft-play centres as I was so worried what might happen if he lost consciousness, even for a moment.

Apparently lamotrigine sometimes leads to an increase in myoclonic seizures, and you also have to watch out for a rash, but luckily ds2 hasn't had any reactions like that. His first drug was sodium valproate and he's still taking that twice a day as it stopped his tonic-clonic seizures. The valproate seems to be the one that most epileptics are started on as it has been around for ages, but that really affected his behaviour so I'm happy that hasn't been increased any more.

NorthernLurker · 25/04/2008 13:58

I will pass that on - i think they have tried the valproate - it sounds familiar - and it did really affect his behaviour which was very hard for his mum.

oiFoiF · 25/04/2008 14:00

Filljonk, dd had a tonic clonic seizure 2 or 3 months ago, cant remember now but it was her first. It went on for about 10 mins I think and we rang 999. It took 6 weeks for the eeg to come through and the eeg was 'not conclusive' in themeantime though she had a 'smaller' fit, we thought, that looked similar but v short. Its apparently called a petit mal. As she had this aswell her paed said it is best for her to have low dose medication, which we havent yet started. Apparently as well some people do just have nocturnal seizures and no problems during the day

Her previous eegs have always been clear.

Try not to worry. I know it is a worry but do try not to. We have put a baby monitor next to dd now but sleep is proving hard!

Fllight · 25/04/2008 17:00

Filly I missed this I really hope he is Ok and was only having a dream.
How terrifying for you

Original poster

Fillyjonk · 26/04/2008 08:43

thank flight. Am quite worried but not sure why.

his last eeg came back negative, what no one told me (and I did ask) was that it will only show abnomral activity while the eeg was going on. that said they were looking for evidence of absences, which generally give an unusual eeg? at that point he had not had a tonic-clonic fit.

aaargh.

OP posts:

fatzak · 26/04/2008 08:54

Hello FJ, hope that DS is ok at the moment.

We have quite a similar position to you Mummypig and it's interesting to read about your DS change of meds. DS1 suffered from myclonic jerks for ages before we twigged that something wasn't right, then he had a big tonic clonic during his sleep. He's been on epilim for a year now which has completely stopped his day time jerks but without fail everytime he falls asleep he has some kind of episode. Hard to describe, it's a huge intake of breath and he is pushed forward and his arms fly out and his eyes fly open He's had a sleep deprived eeg but when he had the episode then, the recording showed no activity linked to epilepsy. Consultant has now decided to refer him to a paed neurologist.
Anyway, i think my point was going to be that i think that the epilim is really affecting his behaviour and concentration - he just can't focus at school or sit still (he's only 4 but it's getting worse) I hope that we can change meds but i have a feeling that this could go on for ages. May well think about a private neurologist if we have no luck with the one we see.

Sorry. Lot's of whaffle but it's always reassuring to find other mnetters in similar postition!

Fllight · 26/04/2008 10:59

Filly I don't know if it is possible or appropriate in his situation, but I was reading up about ECGs and it said that you need to press for it to be done for a few weeks- so wearing a monitor until abnormal activity is 'captured'.

I know it's a different thing (not sure what an EEG is tbh) but I wonder if this might be something they'd consider.

oiFoiF · 26/04/2008 15:02

I read something that said if a person suffered nocturnal seizures they often had to be asleep whilst the eeg took place. How that works with children and co-operating I have no idea

fatzak · 26/04/2008 15:35

We had a sleep deprived eeg oiF. We had to only let DS have about five hours sleep, so got him up at 3.00am then took him to the hospital at 9.00. Fortunately he was in a good mood and just hopped into bed and went to sleep!!! I can imagine it would be much harder with a toddler!

mummypig · 26/04/2008 20:32

hi fllight, the ECG is an electrocardiogram i.e. measures electrical activity of the heart. The EEG is an electroencephalogram measuring electrical activity in the brain.

We've had both for ds2. The ECG was to check if his continued falls were due to a cardio problem as opposed to epilepsy. Ds2 eventually went for a 24h monitor at GOSH. But even with previous heart failure and a cardiologist backing our request, it was really hard to get that done on the NHS.

The EEG is probably more useful if epilepsy is suspected but as Filyjonk said it might not show up anything unless there's been a recent seizure. Luckily for us ds2 had had two seizures about an hour before his EEG.

Ds2's EEG took about 40 mins but it was pretty difficult getting him to agree to the electrodes going on his head. After all his recent seizures I think he was feeling pretty sensitive.

fatzak, if we had stayed with the NHS paed they would have just increased ds2's Epilim to the maximum to see if it stopped the myoclonic seizures. They didn't really seem to take on board the effect on his behaviour (probably because they didn't have to deal with him from day to day). As I said before, I'm really pleased he's on the lamotrigine now and his behaviour seems to have calmed down.

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