Hi everyone,
I'm new to the site. I became a grand mal epileptic in my teens and after several unsuccessful years of trying medications, was put on a combination of Carbamazapine (tegretol) and Sodium Valproate(epilim). The combination of these two drugs offered a high level of stability for me.
I have two children, a 17 yr old boy - perfectly healthy and a 10 year old girl who has tragically been affected by Sodium Valproate. She has Fetal Valproate Syndrome. We sought pre-pregnancy counselling several times over the years and no-one told us that this syndrome was out there. We were warned that there was a slight increased risk of spina bifida but if I took massive doses of folic acid it should hopefully act as a safeguard.
At the 22 week scan it was revealed at that our baby had spina bifida but that wasn't the worst of it. When she was born the specialists after 9 weeks, informed us that she had Fetal Valproate Syndrome as well. We had never heard of it before and it seemed here in Australia the doctors hadn't dealt with very much either, hence the delay in telling us about it. At this point it was revealed to us that our daughter's principle condition was in fact the Syndrome and the Spina Bifida is part and parcel of it.
Jacqueline is now 10, although she walks, she does have mobility issues. She is also incontinent both bowel and bladder but the most crushing blow of all is that she is intellectually impaired and will always be dependent on someone to help her do the simplest things. Her condition requires so much physical caring from myself and it is very tiring and often leaves me feeling very dispirited. This in itself can be very taxing with own health issues.
It devastated my husband and myself. On a personal level, I can't tell you how totally responsible I felt for all of my daughter's problems, everytime anyone would ask, "Why is she like that?" It was like a knife through my heart.
It is beyond tragic that a drug can be given to women in child bearing age that has effects more far reaching than thalydamide and no one as yet has been called to task over it. However, it seems that in the UK a class action suit is being mounted, these things take years though for anything to eventuate.
All I can say to anyone out there who may read this, if you are on Valproate and considering having children, please for the sake of your unborn child, seek the advice and guidance of your neurologist for an alternative medication that is less toxic.
I only meant to say a little hello, but these are things I never say out loud, I just keep them bottled up, I hope I haven't put anyone to sleep.
Jac's mum
I'm new to the site. I became a grand mal epileptic in my teens and after several unsuccessful years of trying medications, was put on a combination of Carbamazapine (tegretol) and Sodium Valproate(epilim). The combination of these two drugs offered a high level of stability for me.
I have two children, a 17 yr old boy - perfectly healthy and a 10 year old girl who has tragically been affected by Sodium Valproate. She has Fetal Valproate Syndrome. We sought pre-pregnancy counselling several times over the years and no-one told us that this syndrome was out there. We were warned that there was a slight increased risk of spina bifida but if I took massive doses of folic acid it should hopefully act as a safeguard.
At the 22 week scan it was revealed at that our baby had spina bifida but that wasn't the worst of it. When she was born the specialists after 9 weeks, informed us that she had Fetal Valproate Syndrome as well. We had never heard of it before and it seemed here in Australia the doctors hadn't dealt with very much either, hence the delay in telling us about it. At this point it was revealed to us that our daughter's principle condition was in fact the Syndrome and the Spina Bifida is part and parcel of it.
Jacqueline is now 10, although she walks, she does have mobility issues. She is also incontinent both bowel and bladder but the most crushing blow of all is that she is intellectually impaired and will always be dependent on someone to help her do the simplest things. Her condition requires so much physical caring from myself and it is very tiring and often leaves me feeling very dispirited. This in itself can be very taxing with own health issues.
It devastated my husband and myself. On a personal level, I can't tell you how totally responsible I felt for all of my daughter's problems, everytime anyone would ask, "Why is she like that?" It was like a knife through my heart.
It is beyond tragic that a drug can be given to women in child bearing age that has effects more far reaching than thalydamide and no one as yet has been called to task over it. However, it seems that in the UK a class action suit is being mounted, these things take years though for anything to eventuate.
All I can say to anyone out there who may read this, if you are on Valproate and considering having children, please for the sake of your unborn child, seek the advice and guidance of your neurologist for an alternative medication that is less toxic.
I only meant to say a little hello, but these are things I never say out loud, I just keep them bottled up, I hope I haven't put anyone to sleep.
Jac's mum
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There are lots of really nice people here, so feel free to vent when needed. I'm sorry to hear about the special needs of your child. And it is frustrating that the meds we need to control our seizures are so toxic. You'd think that with all the money the drug companies are making, they could come up with meds that are safe to be on when pregnant. Anyway, welcome to the group. *hug*