ds2's epilepsy and what to expect from school

[mummypig]

hi, have started a topic in 'Health' about ds2's seizures but invited over here by needmorecoffee. Starting to think about what I will need to do when school starts again in Jan. Was going to write a letter explaining what's happened, what his diagnosis is, enclose clear info about what to do if he has a seizure in school. School does have a very good SENCO and several kids whose parents are really pleased are in mainstream education rather than a special school, so I think they are okay about dealing with it. I don't really know what we should expect or ask for though.

I'm also wondering how the nursery teacher will deal with ds2's behaviour on a day-to-day basis. Fingers crossed his behaviour will get back to 'normal' (for him) and he won't be as much trouble as he has been with us since the seizures and drug treatment started. he has definitely been more hyperactive and more prone to having tantrums, but then again that might be a reaction to what's going on in his little life and how he doesn't really have any control over what is happening.

thing is, I have helped out in nursery a few times and there is one child who def has some SN although I haven't been told what, and I don't think the teacher is particularly tolerant of his behaviour. She's not that far off retirement, which might affect her patience... From what I've seen he just wants lots more adult attention than the other kids, and when he gets it he's not any worse than they are. However the teacher spends a fair bit of time being quite curt with him (in my opinion). I'm obviously going to flag up the fact that d2s behaviour has got worse in response to the whole situation, but if we're finding him completely exasperating and we are his loving parents I wonder how she will deal with him!

apologies for my long posts, getting it down in words helps me to think everything through

you need a meeting with the head and senco and class teacher. plus the school nurse.
but be firm.

agree with nmc. you need to meet with school. has he had a fit at school? does he have an emegency drug he has to have if fit lasts more than a set time?

thanks both. I shall arrange a meeting at the start of term. We have been given buccal midazolam in case the seizures last more than 5 mins. He hasn't had any fits at school, the first one ever was just over a week ago on Fri evening, and I kept him out of school for the last few days.

I shall copy in the SENCO, teacher and nurse when I write my letter, and do the copies myself, then I'll know they've received the info. i do the school newsletter so I could even put them straight into the right pigeonhole.

I would see them personally. They'll need to know the buccul medazolan really knocks a child out (and how to adminsiter it. First time I OD'ed dd as I didn't realise its 0.5mls and not 5!!!)
And they have to appreciate that AED's do affect behaviour, as do seizures. Too many kids get told off if they have an absence or simple partial (can walk and talk in those but don't make sense. Only partially conscious) cos the teachers think they are playing up. AED's can make a child aggressive, poor memory, poor learning, ADD, dopey or hyper. Its an endless list and not the child's fault. Epilim made my dd lose physical co-ordination (she has quad CP so it showed as excess drooling and inability to suck)
You might want a statement drawn up too.

hi nmc, I will def ask for a meeting but also wanted to get stuff down on paper too, partly so it's clear that I have given them the information.

I bumped into another school mum today who asked how ds2 is. She looked after my ds1 when we had to take ds2 to hospital on Tuesday. She also happens to be a pharmacist so has some knowledge of epilepsy and AEDs. When I mentioned the behaviour she recalled that a few weeks ago he went through an awful phase when he was hitting and bumping in to people for no apparent reason. she said she felt this behaviour was very uncharacteristic and wondered with hindsight if it was anything to do with the seizures. Given that we have been noticing loads of myoclonic seizures since the first tonic-clonic eight days ago, I now wonder if he started having them even longer ago, and no-one picked up on them. The behaviour then was very similar to the way he has been this week.

Hate to advertise another forum but also try posting this on the NSE (National Society for Epilepsy) forum: they have a subforum for parents and a few of the kids are in mainstream; there's a wide cross-section of experience with schools, from fine down to berluddy awful tbh.

My concern (if I were you) is there's a huge difference between having a written protocol on file, and if he has a bad enough seizure to end up with school nurse or whoever, then they dig it out of the file to see what to do, and everyone who is in contact with him understanding the condition, medications, how it affects his behaviour and what their extra responsibilities are. I found DD1's school very receptive to me running an after-school training session for the staff, might be worth suggesting something similar?

thanks for your suggestions r3dh3d, I have been reading posts on the NSE forum and it looks v good but they are not approving any new people until after new year so I can't post anything yet.

I think I'm partly worried that I'm not the best person to offer 'training' to the school as I might not be fully aware of the extra responsibilities involved yet. I certainly feel that dp and I could do with extra training to deal with his behaviour - and we've been to parenting classes before so we have the 'usual' techniques to hand. It's just hard to focus on the positive when he's been deliberately hitting us as hard as he can.. I'm sure everyone on this board has dealt with worse though.