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Myoclonic Epilepsy - Anyone know anything

(2 Posts)
elsaoscar Wed 01-Jul-15 21:34:12

hi all, I've got a 4 year old DD (developmentally sound) who was diagnosed with myoclonic epilepsy at around 2 years old (we've never really been told what kind and have been tested for Dravet which was negative). She had the odd eye flicker and head dip but not too many and reasonably well controlled with Epilim. She's 4 and a half now and due to start school in Sept. Her 'episodes' as we call them have been getting more frequent and more noticeable and the paeds have suggested Keppra which we are introducing slowly now over the last week. We've seen little improvement and whilst she's a normal functioning 4 year old apart from this I feel like this is taking over her life too much as she now refers to them as he funny turns. Does anyone have any experience of this, anyone know anything? I'm so googled out from the last 2 years that my head hurts. I am worried about leaving her in nursery, I worry all day about her at work and I'm pretty sure my one year old son would say that he get's not enough attention as mummy and daddy focus all their spare time on DD..

kissmaass Wed 22-Jul-15 21:32:03

Hello - just wanted to say that I feel your pain. DS aged 9 has been fully controlled on keppra (nocturnal epilepsy) for 5 years now but like you I have googled everything under the sun. I suffer from stress and had trouble bonding with my second child as he was only 2 months old when DS was diagnosed. He had a lot of side effects from the epilim too. It was hell sad I think worry/stress are part and parcel of being the parent of child with epilepsy (hugs). Keppra is a good drug (give her extra B6 tablets if she gets angry on it - google in for more info). It'll take longer than a week for it to be effective, especially if you are increasing it gradually - it took about 2 months for us to get to the right dose for my son. Keep with it.

Will send you this as a private msg too as this post is quite old. Epilepsy Chit Chat is a good group on facebook - they take the piss out of themselves (black humour) and like positive posts not doom and gloom. It cheers me up to read it.

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