epilepsy- absences- experiences please

[Jimjams2]

DS3 had an absence followed by a period of unconciousness for 8 minutes this week. It's been marked down as a febrile convulsion (which it prob was - his temp was 41.5). However the Romeo thread has got me thinking. There have been a number of times in the last year when I've thought he might be having an absence- he kind of goes of in a trance and doesn't respond- doesn't go stiff or floppy or anything though- not for that long- just like he's lost in thought- 20 seconds ish?

Given that he's now had a kind of confirmed absence should I be worrying about these others (or not worrying, rather, doing something). I don't particularly want him on epilim-in fact I don't want him on epilim at all do they give that for absences? Or are they happy just to monitor.

Hmm was thinking of just observing and if it happens again then taking him to the docs. Would it be terribly irresponsiible to just observe for now? (please say no )

other people by the way have said "oh look he;s in a trance", but I'vbe never saiid to anyone that I thought they could be absences.

[edam]

Hmm not really qualified to speak on this one but hey ho, would never post at all if I let that hold me back... I'd probably just keep a watchful eye on it, personally. Speaking as someone who has epilepsy (not absences, though). British Epilepsy Association/Epilepsy Action website maybe helpful (although I'm sure you've had more than enough of looking up medical conditions by now).

[misdee]

i'd say keep an eye, make notes thern see GP with the evidence, so to speak.

[2Shoes]

agree with Bethron keep a record(always useful if you have to go to the hospital) i write it all down even when I am not sure.
is eplim always used for this?
dh has absences but is on tegretol and dd is on lamotrogine.

[Jimjams2]

Developmentally he's completely "normal". which is kind of what we've been concentrating on for the first 2 years! But also why I haven't really had it checked. Always something to worry about isn't there!

Thanks ever so much for the advice, marking it all down is a good idea. I seem to vaguely remember when I looked it up before that I rejected absences in favour of him thinking deeply because he didn't tense up on one side or something (this is vaguely remembered, so could be completely wrong). mind you he didn't on Monday either and everyone seems fairly convinced he had one before passing out.

[Jimjams2]

Thanks Bethron- that's really helpful- yes it was the smacking the lips etc not stiffening on one side- he doesn't do that, nor do his eyelids flicker-he just goes into a trance (he didn't do any of those things on Monday though either and I was watching him to see if his eyes were going to roll back- I knew he was having a funny turn iyswim and was looking out for a convulsion).

[Clarinet60]

Jimjams, bear in mind that when you do take him to the medics, they'll be doing their own 'observing' which could take you well into next year and beyond. If you're worried, get him started down the route. Ds is on Epilim (amongst other meds) I know it's not ideal, but you could use the advice of a good neurologist.

[Jimjams2]

Yes that's true Droile....

Tiredness may well be a trigger. They seem to happen more commonly in the early evening (my Dad has commented a few times on him being in a trance- and he comes in around tea/bed time) I haven't seen him have one of these episodes for a while, so I will keep an eye at the moment - if I see one again I'll take him. I'll watch him hawk like.

[Jimjams2]

oh no Bethron- I'm glad you said that! I have friends with children with poorly controlled epilepsy so I know what you mean!

[wannaBe1974]

I have a friend in south Afriica who suffered from absences from the age of about 15. She was given tegretol and to my knowledge the instances decreased signifficantly. I know that she went to the gp and while she was waiting to be referred t a nurologist she was asked to keep a diary of all absences, dates, times, circumstances, and after effects (I remember she would come out of one feeling a bit confused and cold but nothing other than that.)

It might be worth keeping a diary anyway but couldn't hurt to go and have a chat with your gp?

[Jimjams2]

Except my lovely GP is leaviing I'm seeing him before he goes so I will ask.

It does also mean I'll have to have a new patient check somewhere soon so I will mention it, you're all right I should do. And I will keep a diary as well.

Thanks for the advice.

[Kelly1978]

my ds1 is suspected of having epilepsy, and we're going to have to wait ages for an eeg. I would get him refered as soon as you can to get things moving. My ds has vacnat phases, worse when he is tired or stressed, and sometimes they have caused him to really hurt himslef because he goes vacant when sitting or standing and goes limp and topples over. Although he isn't having fits as such, it is still distressing for him. It also causes problems as the vacant phases can be very short which means he doesn't hear instructions and so loses track of what is going on.

[nutcracker]

We were concerned that Dd2 was having absences about 2 years ago. It was her nursery that had noticed.

Anyhow, I took her to the g.p and as she was also having other probs she was reffered to a pead.

They asked me to keep a diary between then and my next appointment, which I did and they said they weren't concerned and left it at that. Dd has been fine since.

[Jimjams2]

That does sound a nightmare kelly. Who do you have to see for this sort of thing - is it a neurologist? Or a general paed?

[Clarinet60]

echo that, general paed first, then neuro.

[Jimjams2]

Thanks Bethron- all really helpful. Am I right in thinking absences are often not picked up on EEGs? The thought of doing an EEG with ds3..... He wouldn't let the dr's or nurses near him last week!

Oh God why can't I have simple children Even ds2 has some weird chest lump thing!

[Jimjams2]

Thanks Droile- waiting lists for general paeds aren't too bad here I think........ We were seen quickly with ds1......

[Jimjams2]

Dunno but I wish I had one

Am watching him hawk like from now on..... Should I be timing them?