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Recent diagnosis of Epilepsy and use of Epilem

(4 Posts)
zippytiptoes Sat 06-Aug-11 22:29:49

Hi,

We've had a challenging few years with our kids health and feel a bit at a low ebb. Our youngest daughter was born with dislocated hips and has had numerous operations, casts and hip braces and eventually at the age of 2 & 3/4, she walked about a month ago.

However, our excitement has been somewhat overshadowed by the fact that she has been having seizures with increasing frequency and was diagnosed on Thursday as having epilepsy.

I am not one to jump into things without a bit of background information and would be really grateful if anyone could share their experiences of the drug 'Epilem' - sodium valproate. I've read bits about it dulling your personality a bit and so I'm a bit reticent to start her off on it without knowing a bit more both positive and negative.

Also, if anyone has any general advice about kids and epilepsy, I'd be really grateful. What should I read, be aware of, make provisions for etc etc?

Thanks a lot for any help you can share.

flowery Sat 06-Aug-11 22:32:23

Have no time now but just putting myself on the thread and will come back properly tomorrow

flowery Sun 07-Aug-11 14:28:08

Ok I'm back. I was diagnosed age 11, put on Epilim at age 14 in 1990, was on it until it caused me to lose a baby to spina bifida in 2003.

I realise your daughter is obviously not anywhere near childbearing age but current advice is that women of that age shouldn't be on it for those reasons, so I would bear that in mind. Personally I'd avoid it altogether if possible but would at least want to change her over as she approaches puberty just in case and would bear in mind that changing medication is difficult.

I'm on Lamotrigine now which is less dangerous for pregnancy (now have two healthy boys) and is better for other reasons as well. I find less side effects than with Epilim (weight gain, hair loss, tiredness).

If she needs to be on Epilim I found the slow-release tablets better as I got lots of 'peaks and troughs' of effectiveness when I was on the straight tablets. Slow release as it sounds releases a steady dose rather than one 'hit'.

star32 Sun 25-Sep-11 21:54:57

hi my son was on epilim for a few years from the age of 2 or 3 , he had no problems while he was on it . happy to say hes no longer on that or anything else as he appears to have outgrown epilepsy. hes now nearly 13 . xx

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