Epilepsy and behaviour problems when the drugs don't work

[ZoesMum1]

Some Mum's of children with epilepsy would really like to hear from other Mum's of children with epilepsy. My daughter has Petit-Mal epilepsy and some of the behaviour problems we see are very similar to another child with the same condition. It seems quite common that the drugs don't work and yet doctors never seem to talk about the behaviour problems or education problems or offer advice on how to cope. It would be great to hear if you are experiencing the same problem or even better, if you have any advice!

what do you mean? the behaviour side effects of the medication?

We have certainly seen a change in our childs behaviour since starting on the medication. I think i would prefer it to the seizures though

petit mal is like a smaller version of grand mal

this is a good explanation of types of seizures

Feel a bit humble raising Zoe's epilepsy because there as so many more challenging types which some of you are dealing with.

Zoe's just freezes what ever she is doing and stares for a few seconds, up to 15s. She is on ethosuxamide which works better but her EEG is still abnormal and probably still having brief seizures.

She is starting school in September and still clings to us and her comfort blanket. She just wants to stay with us all the time. If we do get her playing with other children she often suddenly bursts into tears and seems frightened. She is probably haveing brief siezures, may be they affect her memory and she forgets where she is? It is really holding her back.

Is this sounding famililar to anyone?

Subclinical seizures, YES, I agree. We have an appointment at Great Ormond St so she may start another drug. I haven't met any other families where these type of seizures have been controlled, that's why I'm keeen to hear about the effects on behaviour, memory, education etc.

How old is DD? What do you see when her EEG is worse and she is "tetchy"?

Sorry to hear that you are concerned about LG. Initially we had concerns about focal epilepsy , brain tumours etc had to be ruled out. It is stressful.

Sorry to be a while coming back to you. It is 2y since Z had overt absences but I remember how hard it is to watch and not be able to do anything. Which centre is dd being treated at? Don't feel you have to answer.

Thinking of you both

Hi Zoe'sMum1. My ds2 has tonic-clonic seizures (used to be called grand mal) and also myoclonic seizures but they have thankfully been controlled by the drugs for about 3 months now. We do see behavioural problems even though the seizures are under control, but, like Ryobi says, they are preferable to the seizures.

Ds2 is also starting Reception in September and has been in Nursery at the same school this year. I was initially worried about how they would deal with him having epilepsy. Then I spoke to the SENCO and found her son had epilepsy too, and was on anti-epileptic drugs until he went to university. So it was a huge relief to meet someone who knew what I was going through, and overall the school were really helpful. They even organised epilepsy education for all staff members. Now they should all know about the different types of seizures and what to do if ds2 has a seizure at school.

However, along with the form I have to fill in for Reception, I have just finished writing a short thing flagging up the drug side-effects. I just have a slight suspicion that as long as drugs are controlling seizures, and they have a first-aid plan in place, they feel nothing more has to be taken into account. But I do think he needs a bit more 'special treatment' than that. For instance, whenever the dosages are increased he gets really tired and the Nursery teacher has been quite good at just letting him sit in the book corner when he feels dopey. Also recently he has been pooing in his pants a fair bit and I have realised it is definitely connected to the drugs. (It took me a while to work it out but the new patient information leaflet does list diarrhoea as a side-effect for 1 in 10 people taking the drug.) I haven't decided yet what to do if that is still happening in September.

Anyway it would definitely you be worth talking to the staff at the school and flagging up her behaviour, how it is probably connected to the epilepsy, and how you would like them to deal with it. Then hopefully they might be more tolerant of what could otherwise just be labelled as a 'clingy child'.

Also I wondered if you had found the NSE (National Society for Epilepsy) forum? Someone on mumsnet directed me there when ds2 started having seizures and it's very helpful. There's a special section for parents and I wouldn't be surprised if you found someone else in a very similar position to you.

Apologies for the long post!

Long post is great. Heaps of good ideas. We have spoken to the reception teachers but I hadn't thought about the SENCO...I will follow up on that. Will also try parents forum on NES.

Obviously I would choose the drugs over the seizures. I don't think Zoe's behaviour problems are drug side effects.

We are just realising that she has behaviour problems and that these are probably due to Z's epilepsy not being as well controlled as we & her doctor thought. It's hard to work out what is just Z and what is due to the epilepsy.

What is annoying is that for the last 12 months I have been concerned about the amount of activity we still see on Z's EEG and that behaviour probelms were emerging but the specialist has just ignored me.

Whether the behaviour problems are drug related or due to poor control of seizures I can't help feeling that if we knew a bit better what to expect we may be able to avoid some of the problems or at least hadle them better/quicker! A bit like your child's problem with pooing pants.

So still interested to hear from parents of children with absence seizures.