Rages following seizures 5 year old help.

[JuneBabyBug]

Hello,

My dd had her first seizure in January this year- it was out of the blue and a status epilepticus seizure lasting over two hours. She required oxygen and a ward stay for over seven days - it resulted in her experiencing temporary paralysis on her left side. She has continued to have tonic-clonic & status seizures (witnessed by paramedics, consultants and resus ward) but her eeg has come back normal alongside her CT. She started Keppra two months ago.

However prior to starting the medication her personality has changed almost overnight. Gone was my bright bubbly little girl and in her place was someone lethargic, angry and irritable. She has meltdowns that last over an hour (kicking, screaming, hitting and yelling) over the smallest request. I'm now in school daily with her uncooperative, defiant behaviour , this was experienced before starting the medication which we had hoped would help. Her left eye also on occasion turns in to the side (almost as if shes going crossed eyed but the other eye doesn't?) , and she's still suffering with back of head / neck pain - originally we thought it was related to the big seizure - she had started to complain about her neck / back of head a few weeks after Christmas and still complains now - the consultant believes its related to tonic seizures. I'm really worried it's relating to a tumor in her brain. I've asked her consultant for a MRI but he doesn't see it necessary as her CT was clear and she's not clumsy.

Is this just part of epilepsy? Is there anyone else I can ask for an opinion? Would a GP help? Has anyone got any experience of anything similiar?

I was a teenager but had very similar issues with Keppra. Went from quiet/shy girl to aggressive angry and totally spaced out. Go back and speak to her doctor about changing her medication. Good luck!

She's had a massive traumatic event to her body with the length of time she was in status epilepticus.

What was her stay in hospital like? Was she scared/upset much of the time? Has she had any time to explore what happened to her and how that made her feel - play therapy?

Her needs have changed in school - have they acknowledged this? Does she have an EHCP plan yet? Was she out of school for quite a lot of time? How was she when she went back?

When you're next seeing the consultant it would be worth discussing this - or you could email the team/admin staff to ask for help if you need help more urgently - they might be able to bring an appointment forward.

Epilepsy society has a helpline that might be worth ringing tomorrow for help and advice. I would also reach out to your gp. Ask for a meeting with the school as well.

Thank you- she was quite out of it for most of the stay. Took four days to "come back" to herself by day 7 she was walking, talking and eating and back to her usual self. I'm currently looking into play therapy - we were just discharged with a first fit appointment for two months time.

She went back after three weeks, was quite reluctant to go back (and it's snowballed since then!) She's had five more long tonic-clonic seizures at school - all of which required an ambulance and hosptial stay. We don't have an ehcp - i wasn't sure if she would qualify for one!

Thank you ill get in touch with epilepsy society tomorrow and the epilepsy nurse! Thank you xxx

Thank you - her aggressive state started before the keppra - i had hoped the keppra would mellowed her but it hasn't. I'll ask the consultant for a different type of medication and see if that helps!

In terms of EHCP - it's the Health and care bit rather than education where her needs have changed and are now greater than they were before. The school might focus on her physical needs/keeping her safe but she will also have to be helped with how it feels to have a fit in school - other children's reactions etc.

This plus the fact she's having more seizures at school with time off mean that there is likely to be impact on her educational experiences as well. It might settle once they get her meds right, which can take time some time but as she gets older the impact will grow.

Even though she was 'out of it' there will be some awareness of what was going on in that period - children bounce back so quickly because they are often so happy to get out of hospital/back to their home life. I really think play therapy might help discuss her feelings/explore her anger.

I think her behaviour changes are a rational response to what has happened to her -it' doesn't make it easier for you at all, but I would come at it a need for convalescence/recovery mentally from the experience.

Keep seeking help from everyone - epilepsy nurse should have loads of resources/ideas to help and will have seen this before.