On Wednesday, I attended a consultation with my daughter's neurologist and epilepsy specialist nurse. We were to have a discussion about my 15yo daughter's sodium valproate. She has been on Epilim Chrono since she was 7yo. I was told that, as of two weeks ago, the Health Department's policy is that all girls of childbearing age are to go on contraception if they choose to continue taking sodium valproate - either the coil, the pill or injection. "Childbearing age" includes girls as young as 8.
My daughter has genetic epilepsy (CHD2 mutation), autism and learning difficulties. She has tried a number of drugs and has been on the ketogenic diet for almost 6 years (but recently withdrawn). She is a very young 15yo, is always chaperoned at school and outside because of the unpredictable nature of her szs (tonic-clonic, myoclonic and absences). She requires full-time care and cannot even go to the loo on her own in the night because she invariably has szs.
We have refused to consent to her having contraception but want her to continue taking Epilim. This, along with the other two AEDs she takes, is the best drug regimen for her. Our medical professionals support us in this decision and are equally horrified at the Health Department's position. Is anyone else experiencing this? This is uncharted territory so I'd be very interested to hear from other parents who are facing this decision and of their opinions. Many thanks.
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EpilepsyMum
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I am currently pregnant with my second child whilst taking sodium valproate. Both times I’ve been fully aware of the risks and the pregnancies have been carefully planned with the involvement of my neurologist and reducing my medication, but there isn’t really an alternative to taking sodium valproate for me.
When I had to sign those silly new forms a few weeks ago, there were some things I just did not agree with. My neurologist said that’s fine, he just had to get me to fill it out and he didn’t agree with them all either. He couldn’t get me to win everything. The thing about contraception, I did sign but I wrote underneath “unless I decide to become pregnant again”.
Sodium valproate is the only thing that allows me to live a normal life, I have good qualifications, a good job and a beautiful son thanks to having almost no seizures since I’ve been taking it. I understand why some women are very upset because of not being told about the effects in the past, but now, fully informed, this one-size-fits-all form is not suitable for all of us (eg me or your daughter).
Hi my son is Autistic, Epileptic with learning difficulties. Some of the girls he was at College with had contraception from a young age. Its all very complicated.
The hardest thing is he can't tell me how he feels, we just have to guess. Do all we can to keep him safe
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