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Any parents with epilepsy out there?

(3 Posts)
VeronicaCake Tue 28-Jun-11 10:26:04

I've just been diagnosed with partial epilepsy. At the moment I'm having dozens of seizures a day but I've started anti-convulsant treatment (Keppra) and am optimistic things will improve.

We have a beautiful 13m old daughter and I am incredibly broody. My neurologist has darkly warned me that I must not become pregnant whilst taking Keppra, and that I must get the seizures under control for a few months before we can discuss reducing the dose or trying anything else. Given the severity of my current symptoms not taking the meds is not an option.

So it is going to be a good few months before we get cracking on trying for another child. But the epilepsy makes me a bit fearful about how I will cope. One of my main triggers is sleep deprivation (with hindsight I can see I have had some very intermittent seizure activity for years but it never interfered with my life before so I guess the fact my daughter woke every 1-2hrs for the first 6m was a major reason why things have become so bad).

I'm also concerned about breastfeeding and medication since it seems like Keppra in particular is present in large quantities in breastmilk.

And I'm a little frightened that if my seizures are not controlled I won't be safe to look after a baby. I have myoclonic jerks and although I find holding DD on my jerky arm tends to reduce the amplitude of the movement I would be frightened of suddenly dropping a newborn.

So I'd really appreciate hearing from other parents with epilepsy about how they coped.

Thanks in advance.

Chundle Tue 28-Jun-11 22:31:24

Hi there I've had epilepsy since I was 10 years old. I have mainly tonic clinic seizures and have been on many different meds. I have a seizure every few months but they were daily at one point and up to 3 times daily as a child. I have a 7 year old who has ADHD and a 22 month old with developmental issues. Life is exhausting and we seem to bounce from one disaster to the next but we cope just fine!
Regrading breastfeeding I fed and expressed for both my girls and was on different meds both times I was just told it may make them a little sleepier until they got used to it. Try the Epilepsy Action helpline as they will know more than a paediatrician. My midwife and nurses found out forme.
If you want to chat feel free to PM me

VeronicaCake Wed 29-Jun-11 09:40:39

Thanks Chundle. Daiily tonic clonic seizures sound horrendous. I'm lucky that I don't lose consciousness, I mainly become jerky and can't talk or understand people properly.

It's good to hear that you can cope with two though! Especially two with additional needs. The last six months have definitely felt like lurching from one disaster to another but now I finally have a diagnosis and the meds are beginning to kick in I'm feeling a lot more positive.

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