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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:
Original poster
Fillyjonk · 20/04/2008 18:49

thanks avenap and slipper

he had an eeg 2 years ago (not sure if I said that?). I suppose things can change though, duh.

dp will sleep in with him tonight, he is a much lighter sleeper than me.

if they admit him overnight, will they let dp stay with him ?(I can't-I have a 10 week old who is bfding).

OP posts:
Original poster
Fillyjonk · 20/04/2008 18:51

yes he didn't thrash exactly. And it was on a mattress. And as I say-I am a very heavy sleeper-I have to have a baby monitor going to wake up to the kids in the room next door (this is what 4 years of broken nights has done, btw)

OP posts:
avenanap · 20/04/2008 18:52

Yes. Any parent can stay. I hope everythings ok for you.

Original poster
Fillyjonk · 20/04/2008 19:16

oh thank christ for that

thanks

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sorkycake · 20/04/2008 20:39

Sorry I've not been in since last post filly.

Please don't feel guilty. It happened at night whilst everyone was asleep, there was nothing you could do. As you say he's well in himself.

I would go to the GP tomorrow, unless he fits again tonight, in which case I would take him to A&E.

I'm sure he'll be ok

avenanap · 21/04/2008 13:55

Just wondering how you all are?

Original poster
Fillyjonk · 22/04/2008 17:07

gp is referring him for eeg

this referral could take up to 6 months

She also basically said I was worrying about nothing

I am seriously considering going private, I am not a worrier but aside from anything else, a. iirc a small ampiunt of brain damage is sustained with each fit of this kind b. I can't have him in with us every night for the next 6 months-HE won't stand for that!

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NorthernLurker · 22/04/2008 17:10

where does the GP get six months from? Even diagnostic tests have a waiting time target now I think. I'm back at work (hospital admin) next week so I guess I'll get up to speed then but still.

Original poster
Fillyjonk · 22/04/2008 19:53

3 months to get through appts procedures

3 months from that to appt

we are in wales, does that make a difference?

OP posts:
NorthernLurker · 22/04/2008 20:42

oooh I think it might - I'll google

Original poster
Fillyjonk · 22/04/2008 20:49

that would be kind of you

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NorthernLurker · 22/04/2008 21:05

Oh I'm sorry - BBC website has revealed that the Welsh NHS is still working on patients being seen by 26 weeks! And they've got till the end of next year for that! To put it in perspective - when I started working for the NHS in 2002 - we were working towards 26 weeks for the first appointment. It's now 13 I think.

So - I can see why you are thinking of going private. Things that might help - get your GP to refer your ds as a more urgent case - sounds like this might be an uphill struggle but check out the NICE guidelines (hoping they apply to Wales)and see if there is anything there to help. Do you know what hospital you would be going to? You could ring the neurophysiology (sp?) department and offer to come in at short notice. They most likely fill their slots with urgent cases but it wouldn't hurt.
But tbh - in your place i would pay for a private EEG and appointment - that's not something I would often say but 6 months is too long for a child to wait. I'm so sorry the NHS is letting you down like this

sarah293 · 22/04/2008 21:16

This reply has been deleted

Message withdrawn

Original poster
Fillyjonk · 23/04/2008 08:04

that is reassuring

private eegs seem to be £££

I am deeply uneasy about going private and thusly queue jumping. It is NOT what I ever normally do, but fgs, 6 month seems absurd, he is 4

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Squackycake · 23/04/2008 13:18

If you can afford to do it then go private, Filly.

I have done if anything has ever needed checking.

(and you know the job I do)

NorthernLurker · 23/04/2008 17:57

Stuff the queue jumping - and that's my 'works for the NHS opinion'. It does annoy me when adults with non-urgent conditions use the private sysytem to queue jump - but children - I have no problem with that at all! I also think that you are being hugely let down by the NHS - 6 months for an EEG is absurd and potentially dangerous. Have you thought about just getting a private appointment with a paeds neurologist? You could get his view on whether an EEG is essential and it might provide you with enough answers maybe to be more comfortable waiting on the NHS - or he could expedite the EEG for you - that does go on a fair bit! I was wondering if your ds needs a sleep EEG as well - I'm sure the private cost of that would be astronomical and the last thing you want is for him to have the ordinary one and then them say 'oh he needs this too'

Original poster
Fillyjonk · 23/04/2008 20:38

yes i should say i would NEVER go private normally and I am actually struggling with it.

dp is going to go back to the practice-different gp - appt thurs- and chat to them re options. I did feel that the first gp was a little dismissive.

ds also needs a hearing assessment (separate issue), apparently that is another 6 months+ ...

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NorthernLurker · 23/04/2008 20:55

I should have been clearer I think - when I said 'stuff the queue jumping' I meant - stuff (as in 'stop') worrying about that - you have NOTHING to feel guilty about in this situation. I hope your dp gets somewhere at the GP. Oh and don't take this the wrong way but I am never moving to Wales! 6 months for a childs hearing assessment?

tribpot · 23/04/2008 21:03

In defence of NHS Wales, they do have some good initiatives like free prescriptions, and as for all of this stuff, it's swings and roundabouts.

But filly - how very terrifying for you, I know that if it was me, and I could afford it, I would go private to get some reassurance. I'm used to this kind of random response from (English) NHS for dh, but I could not stand it for ds. I can barely take it as it is!

Glad you're all doing okay.

Original poster
Fillyjonk · 23/04/2008 21:11

yes that is true, we have free prescriptions.

I have been lucky really, this is the first time I've really had to CARE. Ds does need a proper hearing assessment though-he is not hearing properly, and being home educated we are utterly falling through the system, we have to wait for a full on one, there doesn't seem to be any mechanism by which he can have the screening they get in schools. It is most odd (we will probably actually just pay for a screening test if we can work out who does them!)

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NorthernLurker · 24/04/2008 09:30

Can you not access the school nurse system if you home educate then? I didn't know that. He's 4 isn't he - wonder if your hv can help?

Original poster
Fillyjonk · 24/04/2008 09:41

the only thing we seem to be able to do is get him the hardcore tests. We don't seem to be able to just get the straightforward screening test.

this seems like a bit of a waste of money, aside from anything else. we'd be very happy to, say. pop along to a school and have him checked over there but no.

there is deafness in dp's family, incl dp (some hearing loss) so we do need something here, really.

to be fair though HErs are such a small minority that it makes sense we are not covered. And I expect we CAN go private for this, just not sure how.

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NorthernLurker · 24/04/2008 09:43

Have you asked on the home education board (there is one isn't there?) this must have happened to someone else surely?

Original poster
Fillyjonk · 25/04/2008 09:27

thanks nl. its a known problem round here though! It doesn't make a huge ammount of difference to me, esp as we MAY be able to get him a basic test at an opticians ? And he isn't at school, so although there are some intermittant hearing concerns, we are finding things fine so long as we speak clearly, get his attention first etc (I am suspecting glue ear). TV is a bigger problem but he doesn't watch much.

I suppose there aren't many of us and its not worth the resources, I can understand that.

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mummypig · 25/04/2008 09:54

hi filyjonk, coming in here a bit late but just to say ds2 (3 1/2) started having seizures just before Xmas - you can prob find some of my old posts in the archives.

We took him into A&E the first time and were told not to worry until he'd had two or more as lots of kids have one seizure. However he kept on having them regularly (approx one a day) mostly at night, and then also started having 'myoclonic' seizures which are basically little jerks.

After the second tonic clonic seizure we went back into A&E and they referred us for an EEG (but not urgently) and gave us emergency medication in case his seizures lasted over 5 mins. Apart from that there was no more help or information.

We took him back in again after he'd had two tonic-clonics one morning, within about 2 hrs of each other, and was having 'clusters' of myoclonic seizures which made us think another tonic-clonic seizure was coming. It was quite scary and he obviously wasn't himself. They then admitted him for observation - apparently it was the clusters that made them do this, although the nurses didn't seem to take much notice even when he was having myoclonic seizures right in front of him, and the doctors hardly came to see him at all. But they did start him on anti-epileptic drugs, and he was taken by ambulance for the EEG which showed 'epileptiform activity' confirming the diagnosis of epilepsy.

I must say I wasn't very pleased with the way we were treated. At each point the staff seemed very dismissive and seemed to want us to go back home even though nothing was getting better. Because ds2's seizures were almost always at night dp and I were hardly sleeping at all and it was all very stressful and no-one appeared to recognise that, they just appeared to think that by prescribing the drugs they had done everything necessary. We have started seeing a private neurologist who is far far more sensitive and understanding. I also feel quite strange about seeing a private doctor but in this case it really seems to have made a difference. For example ds2 had quite bad behaviour on the first AED and it didn't stop the myoclonic seizures either - he was having several a day for at least 3 months and was frequently injuring himself because of falls - but the private neuro put him on a new drug which has now stopped them completely.

Anyway I hope this story isn't too scary, but I think one of the things I've learned is to keep going back to A&E until someone takes notice of what is going on. But also, it's quite possible that this will be an isolated incident and your little one might not have any more seizures at all.

I've found the national society for epilepsy (NSE) very useful, so you might like to take a look at the info on their website and perhaps the forums too (although you won't get responses as fast as on mumsnet).

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