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9 yr old had big seizure yesterday, any advice?

(19 Posts)
minxthemanx Wed 23-Mar-16 19:33:54

I was scared witless, still can't get over it. He is very healthy, was laughing upstairs as we got ready for school. Got in the car, he slumped forward a bit and I told him to put his seat belt on. No response. Asked again, no response. Looked at him, eyes fluttering and rolling, then whole body started fitting. He went blue round the mouth, face chalk white. This went on for about 2-3 minutes (I called ambulance obv.) I thought he'd gone. It was so awful. Anyway, paramedic came, DS gradually came round but was completely "out of it" for another 20 minutes. Hospital sent us home in the afternoon, apts being made for EEG and MRI as he had a funny turn 6 days ago (I didn't see it), and my older DS had a brain aneurysm at the same age. Those of you with children who have fits/epilepsy; how do you cope? I haven't wanted to let him out of my sight today (, he went to school but I work there too). Am worried it could happen in the night. Any words of advice?

Liara Wed 23-Mar-16 19:36:53

Placemarking as my same age ds also had a fit (in the night) about a month ago and I am still not fully coping. Would love to hear the advice of others.

minxthemanx Wed 23-Mar-16 19:41:01

Oh how awful for you, God it's terrifying. I thought I'd seen it all wth DS1 having ruptured aneurysm, but I was so upset. Really thought I'd lost him, unconscious and blue. How do people cope?

kelda Wed 23-Mar-16 19:44:52

It is scary. My ds ended up in ITU with a seizure that lasted an hour +, we don't know how long it had been going on for. Thank God I woke up to hear him.

Look up Epilepsy Action UK for tips at night time. You can get special pillows etc to reduce risk of not breathing. Also no cuddly toys in bed. You can get monitors as well. For the moment I am still keeping my ds in with me at night time.

It does get easier but I know, this stage of uncertainty is terrifying, and it must be even worse for you with what happened to your older DS.

Don't underestimate how much seizures can effect him. Don't hesitate to keep him home and take the time off yourself if necessary. His health is far more important; I have had to learn that the hard way. My ds regressed in behaviour and other areas and since october has only been to school 8 days but then he does have other developmental problems so not a straightforward case of epilepsy. I haven't been back to work.

Most epilepsy is controlled with medication but it can be a few months before the right medication is found.

kelda Wed 23-Mar-16 19:47:42

Also film any unusual behaviour.

minxthemanx Wed 23-Mar-16 19:52:53

Thank you. I slept in his bedroom with him last night (v uncomfortable!) and had planned for him to sleep in his room alone tonight, but am actually quite worried to. Am I being precious? It may never happen again, we don't know it's epilepsy, don't know if I'm over reacting. Just shook me rigid yesterday.

BettyEasterBunny Wed 23-Mar-16 19:54:10

Yes, film any seizure activity. You should be referred to a specialist.

BettyEasterBunny Wed 23-Mar-16 19:55:45

Get a monitor, one with sound and camera, so you can monitor him at night.

Sometimesithinkimbonkers Wed 23-Mar-16 19:56:48

My DS has epilepsy .... He has clonic tonic and absence seizures. Since birth ..
I have had seizure ... Just the one... So has my friend! It quite common. Don't stress just yet xxxx

minxthemanx Wed 23-Mar-16 19:57:04

Yes the consultant I saw yesterday told me to film any other seizures. Would feel a bit more reassured if he'd had scan/EEG yesterday, because of history with DS1.

Owllady Wed 23-Mar-16 20:01:54

I'm sorry, it's so incredibly frightening. I'm glad he is okay.
Please try not to worry and think too far in the future. My daughter developed epilepsy at 8yo and was hospitalised after a prolonged tonic clinic. We had mri, eeg etc and she was dx with bi frontal seizure disorder. She takes epilimm, we have a bed monitor etc but it's well controlled <touch wood> no tonic clinics for a long time. She has absences but tbh I don't find them upsetting.
I agree with people who say get in touch with epilepsy uk etc. I didn't because I am a bit of a fretter and I think it would have made it worse
Look after yourself flowers

zzzzz Wed 23-Mar-16 20:14:11

You can get a monitor through the paediatrician, they refer you to a Charity who manage it Something Maxwell Trust but you need the pead to write you a letter.
We just moved a bed into our room till we all felt safer.
As to how you cope with the stress? It becomes part of you and less raw.

I'm sorry this has happened to you all. The medication works and life regains a new normal.

Owllady Wed 23-Mar-16 20:25:53

Sorry, I forgot to add about medication. It works very well! smile

gpignname Wed 23-Mar-16 20:48:57

Probably stating the obvious but one of the main risks is the bath/shower and going swimming. If he is okay to have you in the bathroom that would be good - if not, chatting to you whilst the door is ajar is the next best thing. Also do not allow him to lock the bathroom door whilst he is in the bath or even the toilet unless you are able to unlock it quickly from the outside. Swimming he should be supervised specifically/or accompanied.
(My DD has epilepsy - now well controlled with medication but I know how worrying it is).

booksandcoffee Wed 23-Mar-16 21:13:34

Hi OP, I have epilepsy since I was 3 and my heart goes out to you and your son, this will inevitably feel terrifying at the moment. The good news is that with a specialist and a bit of time things are MUCH more likely get under control than not. Things have come on a long way with epilepsy treatment since I was a child in the 70s. ☺ Epilepsy Action is, as an earlier poster said, a good source of information.

Some things that you might want to think about from the angle of the patient. Try not to mollycoddle him. Obviously you need to know that he is safe and in these early days that might involve always being at hand or having someone close by who can contact you and/medics. For what it is worth seizures feel and look far worse than they actually are. As long as he is getting a warning sign and acts on it -sitting down straight away, for example - then confusion and a headache are the most likely immediate consequences. Talk to the doctor about this. At it's simplest, if you think of the signals within the brain as music then a seizure is where part of the brain produces only white noise.

Despite what I just said about mollycoddeling, reassurance immediately after a seizure is always worthwhile. At that stage your son will feel confused and disorientated. I only mention this as my mother was great at the above and rubbish at the reassurance, but hey, no one is perfect!

Medication is much gentler now than it was when I was a child. It might take a few different tries, but the side effects are much smaller now.

A tip for your son, do not try to defy the seizures. Until they got the right mix for me I would always try to fight the seizures off. All that happened as a result was the tension built up inside me and the seizure ended up being worse. Rather too late in the day I discovered that if I just accept the aura is happening and 'go with it' the aura would not turn into a seizure. Not easy for a 9 year old to get their head round and not an alternative to medication but it is worth getting your DS to try to get into this habit.

For much the same reason I would be wary if ever you think he bottles up tension. I am basing this on myself and one other person with epilepsy, not medical records. My mother once observed that my seizures (in the 70s and 80s) were preceded by a few days of my being tense. I wonder now if tension relieving activities might have helped.

Last, and perhaps most importantly, you are not alone. 1 in 150 have epilepsy and there is probably a support group in a town or city near you. Epilepsy Action should be able to point you in the right direction, if not then your specialist will at least know where there is one. If he/she doesn't and there is an epilepsy nurse then he/she will. Best wishes to you and your son. flowers

minxthemanx Wed 23-Mar-16 21:26:08

Thank you so much for your posts. He's sleeping in our room tonight; he asked to as didn't want to be on his own. I've said this is only for a couple of nights, tho, as want him to get on with things normally. Just can'tv quite believe our bad luck; having nearly lost ds1 to ruptured aneurysm 5 years ago, ( and still lots of related problems/ hospital visits) can't believe we may now have this to deal with.

booksandcoffee Wed 23-Mar-16 21:31:10

It does sound like life has dealt you an unfair hand at the moment. hugs

Maegeri Wed 23-Mar-16 21:46:35

My DS has very different seizures that started off being very frequent. One of the epilepsy websites advised keeping a diary. I kept one and put date/time/length of seizure/how they were before seizure (tired/cross/watching TV etc). This really helped when we were seeing consultants and doctors and having tests as I had all the details to hand rather than having to remember it all at a stressful time.

You can't help worrying, its only natural. As for coping, we just put in what safety measures we can and go a day at a time. We try to put it to the back of our minds knowing we are doing all we can and we make sure he lives as normal as life as possible. We were lucky the medication has helped loads, I wish you all the luck in the world and hope you are able to get it all checked out soon.

ShortyShortLegs Wed 23-Mar-16 21:55:13

This happened to my DD (13) too....I just wanted t warn you, you might not get any answers for quite some time.

We were shopping and she was talking to me about an item when all of a sudden she fell into me, I lowered her to the floor, thinking she had fainted, but when she was laid out straight I realised she was twitching/jerking all over and her eyes had rolled back. She was unconcious for about four minutes and took about 10 minutes to be 'with it' and able to talk. She wasn't back to normal until an hour later, and the following day was absolutely shattered.

DM called an ambulance, paramedics did ECG's, finger prick blood test, blood pressure on the way to hospital, and she had another ECG at the hospital (she has a syndrome that can sometimes affect the heart). She had to stay in six hours and was given blood tests but everything was normal. She was sent home, but with the promise of follow up appointments.

This was back in mid November, in early February DD had to do a 24 EGC, I phoned after a few weeks to ask how long before we got results/appointment and was told the results had been looked at by heart doctor at the Echo Clinic and the results must be normal otherwise she would have been seen urgently....so at least I can stop worrying about that! but, although she hasn't had another fit since, I won't be happy until after the appointment...she has taken it all in her stride, I have been worried but trying not to show it.

I wish I knew what had caused the fit..she was well, chatty, didn't feel ill immediately before, wasn't too hot - and there were no warning signs at all.

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