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What should I do - epilepsy advice needed

8 replies

Nat1H · 13/11/2007 15:07

DS2 was diagnosed with epilepsy last November. He has had hardly any seizures since being on medication (only had about 4 before the meds TBH). He started having seizures last Thursday - just a couple, and again on friday. We slightly increased his medication on Friday evening and he had none over the weekend.
Yesterday he had 15 long absences, with some twitching on his ride side, and eyes fluttering from left to right.
He has had one today where he kept going into a seizure, coming out and going back in again - lasted about 10 minutes.
What should I do?
I have rung the neurologist, but she hasn't returned my call yet (hoping she will after clinic today).
He is aslepp now - absolutely knackered poor thing. I feel like a complete novice as he has had so few seizures previously. What would you do? Take him to hospital or wait and see how he goes?
Any advice gratefully recieved

OP posts:
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2shoes · 13/11/2007 15:25

how old? and do you have a emergency medication to give for prolonged fits?

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StaryNightSky · 13/11/2007 15:25

Hi

I have sereve E. myself and it must be very frigtening to have to watch you DC going through this,

By and large the recommendation is that if a seizure last longer than 5 mins, or a person suffers 2 or more seizure in a row without full recovery then you should go to A and E. If the person is still fitting call 999. If you are safe and capable of driving the person then you can do so. I would always recommend calling an ambulance. How would anyone cope with a person in the car having a fit. Additionally am ambulance can give meidcation to stop the fits if necessary.

There is a great website and forum here Who will offer you loads of support and advise.

It could be a whole host of things, change in med's, change in a causation factor.

I really hope the nurologist calls you back. If you have anymore problems tonight call and ambulance. Your DC might need medication to stop the fits (status epilepticus) I'm sure he will be fine but very tried. But it is better to be safe and over protective IYSWIM

Good Luck

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2shoes · 13/11/2007 15:32

StaryNightSky just have to say the ambulance/paramedics can not always give medication. dd is on rectal pharaldahyde and they can not give this.

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StaryNightSky · 13/11/2007 15:38

No quiet agree they don't always.

I have to carry rectal diazapam. But when the ambulance is called they always give vallium / diazapam in the arm. Which causes great problems. Including several brolen writs / arms where they have restrainded to get the canula in.

But cleary if you have the necessary medication to hand you are more used to dealing with things than the OP.

I still think in her cirumstances ambulance is the way to go and what would would be recommended.

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Nat1H · 13/11/2007 16:12

Thanks folks. 2shoes he is 4 and no, we don't have anything to stop seizures.
It just seems a bit odd that they seem to have started up again suddenly, and that we seem to have different seizures from the previous ones. (pre med)
Thanks for the advice - will def call an ambulance if he has another long one. Prob was he was at nursery (SN). I need to specify when to call an ambulance I think!

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2shoes · 13/11/2007 16:53

dd is like that just when you think you have it sussed they change.

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needmorecoffee · 13/11/2007 19:50

we have buccul medazolan for dd if she goes into status epilepticus. Its 0.5ml's given between the cheek and gum, as fast acting as the rectal stuff and doesn't involve ferreting around in nappies.
Her seizures changed this year. After her infantile spasms at 3 months she had maybe 2 seizures a year, both status seizures. Then in Jan she started to have lots of myoclonics then, after a few months, lots of complex partials and status seizures. Finally got the 'emergency' EEG in July and it showed a slow spike wave over both hemispheres that indicated she was developing Lennox _gastaut syndrome. Its worth having an EEG just for that because once it gets started its a bugger to shift, causes multiple seizure types (mainly absences) and status seizures plus, its worse thing, mental regression.
Personally, I would have gone to A&E by ambulance, asked for an emergency referral to a neuro so you can get a rescue med and ask for an EEG to see if a sinister syndrome is developing. hopefully its still 'normal' epilepsy and you can control it with meds.
I would also call an ambulance for any status seizure (longer than 10 mins or doesn't respond to the rescue med) patly cos it may retsart and partly cos a hospital admission says to the docs 'this is serious, stop dicking around'
We stopped DD's Lennox-gastaut pattern with powerful steroids this september. Now waiting with crossed fingers that it wont restart and she wont lose her intellect.

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2shoes · 13/11/2007 21:18

agree if in doubt call the ambulance out. I did it lots when dd first got epilepsy. I apologised once and the nice man said don't worry that is what we are here for,

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