info on epilepsy

[Mother in Need]

My youngest has had fits for a year now, and though he still hasn't been seen by an appropriate specialist the GP and school doctor seem to think it is epilepsy.

My question is, how else can epilepsy affect him (other than the obvious, like absences and fits)? He has a lot of other problems, esp at school, and I am wondering what is cause and effect or what might be something else altogether (ie autistic traits). Examples: mood swings, slowing down of emotional maturity, needs not being met at school (but WHAT needs??????).

[Mother in Need]

I know there are many people on this forum whose kids have epilepsy, so please, someone?

 

My youngest is at the point of a mental breakdown and selfharming etc. He is totally not coping at the moment (apart from the fits and not being allowed to do the activities he likes to do, he has lots of problems at school and has to deal with his brother), and the more info I have the more I can help him.

 

To be honest, I am barely coping myself, with my AS son and his difficult behaviour I have trouble coping as it is, and now with all this on top........... even my eldest was crying yesterday (which for him is very rare), feeling totally neglected. I just don't have the energy to do it all.

 

Someone must have some ideas? How else does epilepsy affect a child, apart from the actual fits?

[aro]

Look at this forum

 

NSE

 

And you can access the NSE web site in the link at the top of the forum.

 

It's a great site for info and support and some of us on here are members. I'm not sure that you will ever find out which is causing which problems (I frequently wish my dd could have a 7 day EEG ) but you should get a better idea of the likely causes.

 

A x

Edited May 11, 2007 by aro

[Mother in Need]

Thank you Aro, have gone there and been reading avidly for nearly an hour now!

[bid]

Hi

 

I don't have a child with epilepsy, but I do work at a residential special school for children with severe epilepsy and related additional needs including autism.

 

We do see mood swings, erratic and/or aggressive behaviour when a child is having epileptic activity, especially when they are 'building up' to a major seizure.

 

Hope you get the right support and information.

 

Bid

Edited May 11, 2007 by bid

[Mother in Need]

Thanks Bid.

 

Aro, I am trying to leave a message, but it won't log me in yet. Does confirmation usually take long?

[krystaltps]

Hi, sorry I didn't reply earlier - I hadn't noticed the post, my eyes were immediately drawn to the buccal midazolam post instead.

My DS2,R, who doesn't have ASD, has epilepsy. He has a malformation of the cortex, meaning he will always have seizures but seizure activity can be very variable. He is prone to clusters and status epilepticus. We can always tell when a cluster is coming on because he gets what we call "the look": dark shadows under the eyes and slightly dilated pupils that makes him look as if he's a bit "spaced out". This coincides with what can best be described as "emotional" behaviour (he is normally such a placid wee boy, but gets tearful and short-tempered in the run up to clusters). Both of these symptoms can last for anything between 1-4 days before the first seizure sets in, depending on how well his little body is managing to "fight it off".

I have to say, if your child has had more than one or two seizures, he should really have seen by, at the very least, a consultant paediatrician or, at best, a paediatric neurologist. He should be scheduled for an EEG, and possibly an MRI scan as well (depending on the type and frequency of the seizures and the results from the EEG). You really have to push and pester on this one - I know from experience: R had his first seizure at 16 months, it became a cluster and he was hospitalised. However no EEG was performed and he wasn't dx with epilepsy until he was 5 (when he finally had an EEG). You have to read as much on epilepsy as you can, because the average GP cannot recognise anything other than your average tonic-clonic. It's a bit like ASD, you have to become that parent that really annoys them - it's the only way to get things done.

I hope I have been of some help.....

[Ian Jordan]

Remember sensory input can dramatically effect some forms of epilepsy - vision in particular - but it often it does not show up under neurological testing. Non invasive visual modification techniques can have dramatic effects - too complex for post though. Visual and other sensory ergonomics have the potential to provoke problems - in particular - pattern, flicker, hue, saturation and brightness.

Combine this with auditory processing problems and .....

[aro]

Thanks Bid.

 

Aro, I am trying to leave a message, but it won't log me in yet. Does confirmation usually take long?

 

 

I'm not sure, I joined ages ago and I think the registration procedure changed. You used to be able to post as a guest but that stopped. If you're not on soon let me know and I'll PM admin

 

A x