Absence seizures: what, if any, support do you have in school and do you medicate?

[Mummyinamask]

Hello

We don't have a firm diagnosis yet but it looks as though our seven year old DD is having absence seizures.

Neither DH nor I have any experience of this form of epilepsy so would be very grateful to hear of your experiences, opinions and thoughts on support in school and medication.

DDs absences tend to be around five seconds in duration and can be very frequent - I've seen therein 45 mins for example. They are also hard to spot (esp for teacher with 29 other children in the room) so it's not easy to get an accurate measure of frequency - but she does tell us she sometimes misses instructions in school.

We have two books so far, both excellent 'can I tell you about epilepsy' and 'sarahjayne has staring moments' and there is some good advice in both of those - but any MN wisdom gratefully received.

We have an appointment with the SENCO this evening.

I'm at work today so may not have time to post again until this evening but will check the thread when I can.

[purgingmary]

watching

[Ilikeafternoonnaps]

Ds has absence seizures and focal seizures but I might not the most useful person to answer this as ds has lots of other difficulties also which complicate the matter!

I don't know much about the support available in mainstream schools as ds is at special school.

As regards meds certainly for us I really felt ds needed medicating as his absences were so frequent and his development had totally stalled. Also he was having lots of seizures in his sleep which were affecting his sleep pattern and learning.

It really is a matter of weighing up possible side effects of medicines which all effect people differently so you don't really know until you try them, with the potential consequences of blank spells so frequently.

We are still trying to find the perfect medicine for ds because of the mixture of seizures he suffers. He's been on ethosuximide for the last two years which is brilliant for his absence seizures but isn't controlling the others.

Sorry I can't be more help, hopefully someone else will be along with more useful info!

[purgingmary]

that is really useful, thanks so much Ilikeafternoonnaps. thanks so much for posting. (please don't be confused by new name, i have a different login at work all got muddled when we had to redo logins after security breach, I mucked it up . . . )

DD has had real problems sleeping for the last few weeks, she struggles to get to sleep and is waking in the night - sometimes two or three times - could this be because of seizures in the night?!

i'm worried about medicating and worried about not medicating! but as you say, probably the best thing is to try and see what happens.

[Ilikeafternoonnaps]

The different name did confuse me, So you are the op right?!

It can affect sleep because if they are having seizures in the night, even absence seizures it disrupts the brain and can stop them reaching deep sleep and disturb the sleep cycle.

The medicine dilemma is often very difficult for many people I believe. You have to weigh up the impact the absences are having on your dd's life. It's also worth bearing in mind that although you see your dd go blank for around 5secs the disturbance in the brain lasts up to 30secs either side of that where awareness is altered.

Hopefully your dd has the communication skills also where if she did start on medication and it made her feel ill or strange, or was effecting her mood she could tell you? Unfortunately ds doesn't so I have to watch for subtle signs to see if it's affecting him aversly.

[purgingmary]

Yes, i am the OP, honest! sorry for confusing you. I'll try to stick with this login at both ends of my life.

that's good to know about her sleep pattern and about the effect on her brain either side of the actual seizure. it seems to me she does need some extra support in the classroom - some checks to ensure she hasn't missed anything, a bit of extra time to complete assignments and some understanding across the school that she isn't necessarily ignoring an adult giving her instructions, even thought it might appear that she's looking into space and blanking them. (although she's more than capable of ignoring too . . !)

she is complaining of headaches/tummy aches at bedtime and when she should be sleeping - i do wonder if that's either stress or worry or something she can't put into words to do with her seizures.

thanks again for taking the time to share your thoughts - i really appreciate it and it's really helpful.

[Ilikeafternoonnaps]

When/if you see a specialist you can ask for a 24 EEG which would show any night time seizure activity. That's interesting about her headaches/tummy aches at bedtime. Ds has always been terrified to fall asleep on his own since he's been having seizures.

I'm not sure but I think for many, certainly for ds he would have lots of seizures running up to bed time as when he's tired they are much worse. Again the changes in the brain as they fall asleep can trigger seizures so it is possible she is anxious/feeling funny.

Tiredness, stress, illness and overstimulation are ds's biggest triggers for seizures.

[purgingmary]

We are due to see the specialist so that's a good tip, thank you.

That is interesting about your DS, I do wonder if DD is experiencing a similar anxiety but not sure how to express it. Our GP once told me that children, when in doubt about why they're not feeling quite right, will complain of a tummy ache.

I have to say, in the run-up to bedtime we often get trapped in a tiredness, stress, overstimulation triangle as we all get increasingly frustrated with lack of progress towards sleep - although now we've made the link between seizures and difficulty sleeping we're being more patient (DD has a history as a relunctant sleeper but nothing like she is recently).

She is also keeping our other DD awake (they share a room) and now you mention it, DD2 (absences) has asked for me to go and lie with her and DD1 has offered to cuddle her in bed - DD2 accepted - so I do wonder if she shares your DS's anxiety about falling asleep alone. I'd forgotten she'd said that until just now.

I will try to talk to her about it tonight.

I thought I needed advice about school and meds but you've highlighted something which is a real issue for us at the moment.
thank you.

[Ilikeafternoonnaps]

[InMySpareTime]

My DS has Absence seizure epilepsy, well under control with Epilim. When we were getting his diagnosis, we filmed him during dinner and got footage of a couple of "blank-outs" to show the doctor.
He did an EEG which showed a couple of them clearly (they got him to hyperventilate to bring them on).
School were really supportive, I sent in a chart for the teacher to record any absences she noticed, which more than anything else got her to look out for them.
Meds are with breakfast and dinner, so don't impinge on the school day.
Most children come off them after 2 years seizure-free.