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Epilepsy - does 4 seizures in one day count as 4 episodes or 1?

(11 Posts)
mumofthreesmallmen3 Wed 26-Apr-17 19:18:20

Hi,

My son who is 18 months suffered his first seizures last week, we don't know at the moment what caused them or if it is epilepsy or not.
He had a first seizure in the morning, tonic clonic which lasted around 3 minutes no temperature, I called a ambulance and we went to a and e, he was very sleepy after. They diagnosed him with a febrile convulsion although no temperature was noticed or recorded, I have dealt with febrile convulsions with my elder son so wasn't too worried.
We left a and e and was waiting outside for a lift when he had the second seizure, he went very rigid, eyes wide and fixed, respiratory rate low and was starting to go blue. We were then sent to the children's ward for observation.
He had a third one there which lasted around 4 minutes. Around a hour after he had the fourth, the seizure did not stop within 5 minutes so emergency procedures we're followed, he had 2 dòses of lorazepam and 2 doses of phenytoin, the seizure lasted for 24 minutes and he had stopped breathing, was sedated and put onto ventilation.
It was the most terrifying experience, he had a clear ct scan, negative lumbar puncture and blood tests so they have ruled out th3 seizures being caused by anything very serious.
We were admitted into intensive care and1 then onto a ward and we're in for a week.
He had a eeg but was distressed and was only on for a few minutes, that showed diffuse slow activity but no definite eleptiform activity, it needs to be redone and we are awaiting appt and for a mri and to go to a seizure clinic.
Dies anyone have any idea of what the eeg results could mean?
And I have read epilepsy is only diagnosed after 2 or more seizures, would his be counted as 1 as they all happened on the same day?
I don't really know what to expect and I find I'm becoming really anxious to it happening again as it was so frightening. His seizures were described as generalized tonic clonic.
Any input would be really appreciated. smile

mumofthreesmallmen3 Wed 26-Apr-17 19:23:51

Sorry forgot to add all the seizures were afebrile there were no temperatures that day or previously. I guess I am just trying to understand what could of caused them.

zzzzz Wed 26-Apr-17 22:02:41

It counts as 4 seizures.

It sounds terrifying. Dd had similarly hard to control epilepsy. Young epilepsy used to do a service where you could call and chat with an epilepsy nurse. I'm glad you are home. Be very regular with medication, that and treatments for fever is really your only defence.
Do you have emergency Meds at home? Open access to a and e?

mumofthreesmallmen3 Thu 27-Apr-17 06:23:41

Yes we have buccal midazolam to give if he ever goes over 5 minutes again. We haven't been given any regular medications or anything but we will be getting a appointment at a seizure clinic, does this sound like typical epilepsy? They did say if he were to have more he would probably be diagnosed with epilepsy and put onto meds, thankyou for your reply x

zzzzz Thu 27-Apr-17 07:36:47

He IS epileptic so I'm not sure why they are saying they would wait to dx? confused
It sounds like he has had a really serious set of seizures but like they are hoping it might not be repeated. The long seizures are the concern and that it took a while to gain control. Realistically all they can do is wait to see what happens next so home is the least stressful place for him and you.

My dd is doing well now but early primary was a bit hairy.

mumofthreesmallmen3 Thu 27-Apr-17 10:18:24

Thanks, what age was your dd diagnosed? Did she have a lot of seizures or any long ones? Does the medication control them now? He has been acting a bit odd today which is scaring me, a couple of times he has looked a bit starey and when I've called his name it's taken a few secs for him yo respond like a little day dream, and a couple of times he's all of a sudden laud himself down and his eyes weren't quite right looked like one was about to start but when I called his name it's like he snapped out of it and then was completely normal. I don't think there is much I can do really until he does have another one

Marshmallow09er Thu 27-Apr-17 15:24:10

Hi

 that sounds like a horribly stressful experience.

Both my DS and DD had 'cluster seizures' (so a few over a day and then nothing for a few weeks) from age 10 months.

They were not linked to illness or high temperatures.

DS was never medicated as they were so sporadic they decided the potential side effects of medication might outweigh the benefits.

DD had 18 seizures over 24 hours at the onset so she was put on keppra to control them. She had a couple of breakthrough seizures at which point we increased the dosage and they did an EEG which showed they started on side side of her brain which then triggered the tonic clinics.

She stayed on keppra for 3 years at which point she had been seizure free for 18 months and then weaned her off keppra and touch wood she's not had another one and she's 5, nearly 6 now.

DS just seemed to stop having the about age 2.

I much preferred it when DD was medicated as I felt they were controlled whereas I was constantly worried DS would have one at nursery / night.

They don't know what caused them but they also didn't want to call them epilepsy as apparently lots of children do outgrow them, as mine seemed to have done.

It's possible they were both just born with an hereditary low seizure threshold which increased over time.

It's hard having to wait and see what will happen, definitely ask for the details of the epilepsy nurse if there is one - ours helped me lots.

I know at the time I was desperate to hear other people's experiences of childhood seizures.

Clearly everyone's paths, diagnosis and outcomes are different, but childhood seizures are not always lifelong.

Marshmallow09er Thu 27-Apr-17 15:34:09

The staring you mention sounds a bit like the partial seizures mine had before the tonic clonics but they didn't always go on to have tonic clonics after them.

But also seizures are exhausting so it could just be him feeling out of it and tired as a result.

flowers to you. It was a very difficult time I do remember, the not knowing and constantly checking at night and in the car seat etc.

I don't feel I'm really qualified (if that's the right word) to offer lots of advice re epilepsy as really my life has only been lightly touched compared to others - but I thought I would share my story with you anyway as I do remember those days very well.

mumofthreesmallmen3 Thu 27-Apr-17 21:09:30

Thanks for your reply, yes I do feel really anxious about it happening again, I have brought a video monitor for his cot as I can't bear to think of what could of happened if he went into status whilst he was upstairs alone having a nap. We have the mri booked in now and I feel quite confident that it should be clear as the ct scan was. Did your children stop breathing during the seizures? He stopped breathing during the big one, and I know one of the others they said his respiratory rate was low and was blue, he also had dark purple lips with the first one. Gosh it's so scary I'm glad yours have not had any for a while x

Marshmallow09er Thu 27-Apr-17 21:34:27

Hello, yes DD had to be on a respirator when she had her cluster of 18. She didn't regain consciousness for the whole 24 hours.

Hope the MRI goes well for you. Try and get some rest if you can!

zzzzz Fri 28-Apr-17 07:24:09

My understanding was that epilepsy was dxd if you had more than 1 seizure. 50% of children grow out of their epilepsy.
My dd had cluster seizures too and I agree there is a feeling of calm from being medicated. Dd's lumber/MRI/eyes were clear but she was (is? sad) quite seriously epileptic. That said at 9 she is a perky little thing and we just get on with it.

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