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DS1 diagnosed with epilepsy yesterday - some practical questions

(8 Posts)
CinnabarRed Tue 17-Feb-15 08:33:09

DS1 is 7 and was diagnosed with epilepsy yesterday. He had his first seizure on Thursday and his second yesterday, so we haven't really had much chance to process the practical implications.

He is due to have an EEG in 4-6 weeks, and to start antiepileptic medication a couple of weeks after that, so in the short term his epilepsy is uncontrolled.

The doctor has already explained about no swimming, no cycling, no chain saws (!) for the time being, but some other questions have come to mind overnight and I can't find much information on practicalities. Can anyone help?

1. Does he need to have someone with him absolutely all the time? Sometimes he likes to play Lego quietly by himself, and he wouldn't appreciate me dragging his younger brothers into his room while he's building (for example).

2. Presumably he shouldn't go on climbing frames, up tall slides, etc until his epilepsy is better controlled? How about hide and seek?

3. If he has a seizure in the car, and assuming it's safe to pull over, is it better to leave him in his car seat or to try and get him out? I know he's not supposed to be restrained during seizures.

4. Can anyone recommend any books? All the ones I can find online seem to be American, and hard to order over here.

5. What haven't I thought of yet?

Many thanks in advance.

BackforGood Tue 17-Feb-15 15:45:05

Bumping for you. I don't know the answers myself, but realise your head must be in a whirl.
Is there a specialist nurse at the hospital that could answer these questions for you ?

There are a couple of websites here that might help, if no-one more knowledgeable comes along soon.
Epilepsy Action
Epilepsy Society

goodasitgets Tue 17-Feb-15 15:50:15

Does he have any warning of it coming on? I would start watching for signs. Only because it makes life easier! I got an aura, like a fuzzy black and white tv, and we came up with wording "mum, I feel..." And she could grab me before I fell
She said I used to get an odd look and stare around before having one
Just if he does anything like that, you have a better idea of how much time you have if that makes sense?

CinnabarRed Tue 17-Feb-15 15:56:22

We're planning on keeping a seizure diary, but we haven't spotted anything so far.

It doesn't help that I haven't been with him on either occasion - the first was at school and the second was after I'd left for work.

I feel like I need to see him have a seizure - to prove to myself that I can cope, before it turns into a massive hurdle in my mind.

countessmarkyabitch Tue 17-Feb-15 16:02:37

I answered on your other thread, but to add to this: you will cope, and you'll surprise yourself how much. There really isn't that much to do during the seizure, on side if possible, remove nearby obstacles etc. Its the after bit you're needed more, the post-seizure phase can vary enormously. My DD can be teary, or angry, or wanting to be held or really not wanting to be held, or just sleepy and out of it (most common). Sometimes there is vomiting, occasionally there is loss of bladder control to sort out.
You just do it, one of those mum things! I think the biggest thing to do is to be a calming influence.

CinnabarRed Tue 17-Feb-15 16:05:27

Hi Countess! Thanks for posting here too.

Calming I can do. So far he's been tired immediately afterwards but fine again after a couple of hours, so it's good to know that it varies. I'd have been really concerned otherwise.

May I ask how old your DD is, and how long she's had her diagnosis?

countessmarkyabitch Tue 17-Feb-15 16:13:35

Sure, she's 8 and was diagnosed at almost 5.

I've found that the after effects seem to depend on the severity of the seizure, the worse the seizure, the longer she is confused/asleep and the more likely she is to be upset or angsty. Smaller simple seizures she'll sleep for a bit and then be back to normal quick.
I don't know if this is true for others though.

It is something you do get used to, remarkably quickly. For us its just one of those things that happens sometimes, and I try to remind dd that she's just the same as anyone else, its not a big deal. We are hoping she'll grow out of it, but at the same time we just treat it as a part of her and our lives and not something we make a fuss over (although I've been known to have a little cry after a hospital trip in private! ;) )

CinnabarRed Tue 17-Feb-15 16:24:00

Heh! That sounds familiar.

I've told DS that it's not something to be scared of, but it is something to take seriously.

At the moment, he's enjoying being the centre of attention and telling people all about it. He has a friend round to play at the moment, one of the boys he sits next to in class and who was most worried about him, and they're playing Battleships in DS's bedroom. It's reassuring to be able to hear them talk.

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