JME, pregnancy and switching from Epilim to Lamotrigine

[Carla]

Hi Everyone
New to these boards after searching the net high and low for help and advice onder: I have juvenile myoclonic epilepsy, diagnosed at 14 and was prescribed Tegretol first which didn't work. Switched to Epilim 1000mg per day (500mg twice a day, slow release). I've had no seizures for the last 10 years..touch wood. I'm now 27 and planning on trying for a baby soon. I have been put on vitamin B and 5mg of folic acid per day.
Neurologist suggesed slowly coming of meds but there is no way I want to risk that. My other option is to switch to lamical/lamotrigine but I haven't heard many great reports about that.
I just think that as Epilim controls my epilepsy SO well, how can any other meds possibly be better?!
I'm SO worried about having a seizure during pregnancy but obviously I am aware of the risks of continuing with the Epilim throughout pregnancy....
Have done a lot of research and now I just seem to be going round in circles as to what to do for the best.
Any help or personal experiences of juvenile myoclonic epilepsy and pregnancy / Lamotrigine and pregnancy or switching from Epilim to Lamotrigine would be greatly appreciated!! As well as any other help - always welcome Thank you!

 

[Nakamova]

I don't want to scare you, but Epilim (sodium valproate) doesn't have a great reputation when it comes to the possibility of birth defects. The below is from Wikipedia:

The risk of birth defects with valproate is two to five times higher than other frequently-used anti-epileptic drugs (absolute rates of birth defects 6-11%). Children born to mothers using valproate have significantly lower I.Q. scores (9 points). However, some epilepsy can only be controlled by valproate, and seizures during pregnancy can have grave consequences for both mother and child. Doctors recommend that women who intend to become pregnant should be switched to a different drug using combined therapy if possible, which takes several months. Women who are already pregnant and taking a high dose of valproate should try to lower their dose.

All antiepileptic medications have been shown to be associated with higher risks of fetal abnormalities (mostly for spina bifida) since at least 1983 with the risks being related to the strength of medication used and use of more than one drug.
Valproate has also been recognised as sometimes causing a specific facial changes ("facial phenotype") termed "fetal valproate syndrome". Sodium valproate has been associated with the rare condition paroxysmal tonic upgaze of childhood, also known as Ouvrier-Billson syndrome, from childhood or fetal exposure (this condition resolved after discontinuing valproate therapy.

While developmental delay is usually associated with altered physical characteristics (dysmorphic features), this is not always the case. A 2005 study found rates of autism among children exposed to sodium valproate before birth in the cohort studied were 8.9%. The normal incidence for autism in the general population is estimated at less than one percent. A 2008 study also suggested a correlation between higher rates of autism in children whose mothers were treated for seizure disorders during pregnancy using sodium valproate (less than 1% for children who didn't receive the drug in vitro vs. 6.3% for children who did). One multi-centre trial in the UK and US looked at cognitive function in 309 children born to mothers with epilepsy and found that sodium valproate-use was associated with an IQ level eight points lower in children born to mothers taking sodium valproate than mothers taking other anti-epileptic drugs.

A class action is currently underway in the United Kingdom regarding the claim that the drug used in pregnancy caused a range of problems in children, including autism, learning and social difficulties, ADHD, spinal stenosis, facial abnormalities, vision defects, dyslexia, dyspraxia, delayed speech and motor development.

So it would be great if you could try lowering your dose or switching to a different AED. Lamictal brings it own issues, but does have a better track record than Epilim. These threads from the CWE archives may be helpful:

http://www.coping-with-epilepsy.com/forums/f23/lamotrigine-epilepsy-drugs-birth-defects-497/
http://www.coping-with-epilepsy.com/forums/f23/pregnant-have-been-pregnant-lamictal-13151/
http://www.coping-with-epilepsy.com/forums/f20/hoping-safe-healthy-pregnancy-god-willing-13150/

This link may be helpful as well:
http://www.epilepsy.com/node/482019

 

[Eibhlin]

Hi Carla, I replied to you in the other thread on pregnancy and lamictal. best of luck!