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prompted by this just released review on the safety of anti-seizure drugs during pregnancy: https://www.gov.uk/government/publications/public-assesment-report-of-antiepileptic-drugs-review-of-safety-of-use-during-pregnancy/antiepileptic-drugs-review-of-safety-of-use-during-pregnancy
we know valproate (known as epilim among other names in NZ) causes problems. now we have more information about other anti-seizure drugs. 1/17
prompted by this just released review on the safety of anti-seizure drugs during pregnancy: https://www.gov.uk/government/publications/public-assesment-report-of-antiepileptic-drugs-review-of-safety-of-use-during-pregnancy/antiepileptic-drugs-review-of-safety-of-use-during-pregnancy
we know valproate (known as epilim among other names in NZ) causes problems. now we have more information about other anti-seizure drugs. 1/17
valproate physically affects around 10/100 babies, and affects the brain in 30-40/100 babies. other drugs are better, but still carry risks of significant harm.
the problem: uncontrolled epilepsy is also a serious risk to pregnancy. you can't just skip the meds for 9 months. 2/
the problem: uncontrolled epilepsy is also a serious risk to pregnancy. you can't just skip the meds for 9 months. 2/
an aggravating problem: before 2009, scientists hadn't found a link between anti-seizure meds and congition problems, meaning many people took the meds without being informed of all the risks.
in nz, at least 30 people are affected, and there's been five deaths. 3/
in nz, at least 30 people are affected, and there's been five deaths. 3/
. @blairensor did a great writeup about the devastating effects of epilim on babies in NZ: https://www.stuff.co.nz/national/health/114461535/epilepsy-sufferer-warns-against-getting-pregnant-while-taking-epilim 4/
probably many more people have been affected. the condition can show up in a variety of ways: autisim-like, ADHD, behaviour problems, mild to extremely serious physical defects.
people can get diagnosed with the secondary conditions without realising the true cause. 5/
people can get diagnosed with the secondary conditions without realising the true cause. 5/
this matters because in NZ we have ACC to cover you if you have an accident.
a treatment injury is an accident. a congenital defect with no accidental cause is not considered an accident.
and if you have a choice, you want ACC cover. 6/
a treatment injury is an accident. a congenital defect with no accidental cause is not considered an accident.
and if you have a choice, you want ACC cover. 6/
why do i care about this? because my stepdaughter is one of the 30+ affected people, and I had to fight a two year battle with ACC to get them to accept cover for her. 7/
ms 13 was born in 2007, two years before the NEAD study that found the link between valproate and behavioural/cognitive issues.
while ACC will cover you if you suffer a treatment injury, they won't if the injury is considered an "ordinary consequence" of the treatment. 8/
while ACC will cover you if you suffer a treatment injury, they won't if the injury is considered an "ordinary consequence" of the treatment. 8/
since ms 13's mother was given the usual warning about the chance of spina bifida or other physical defects - for an earlier pregnancy on 1/5 the dose of epilim - ACC argued that all consequences from the second pregnancy were "ordinary", and thus not covered. 9/
this was, of course, some bullshit. i knew it. but i didn't know any ACC lawyers... but this is where twitter really shines. i put the call out, and thanks to @irisshackleton it got a recommendation of a great lawyer in Auckland. 10/
the lawyer put their finger on the crux of the problem: how can a consequence be Ordinary if it's not even known? how can ms 13's cognitive issues be ignored when even scientists didn't know they could happen?
ACC caved just before mediation was to begin. 11/
ACC caved just before mediation was to begin. 11/
i thought the inadequacy of the warning (1/5 the dose for a pregnancy 3 years earlier!) would have mattered, but the truth was the warning couldn't have included information about the cognitive and behavioural issues anyway, so never would have been adequate. 12/
ms 13 now has cover, a lot of great support at school and from specialists, and we are paid for the extra work we do to raise her.
a happy ending? not quite yet. there's one more thing to do: spread the word. 13/
a happy ending? not quite yet. there's one more thing to do: spread the word. 13/
if you know anyone who has epilepsy, and had a child, and that child has symptoms such as physical malformations, ADHD, autism, behaviour issues, heart defects... have a chat. point them at http://facsnz.com 14/
and if their child was born before 2009, there's an excellent chance they could win ACC cover - which can mean extra help and support (including financial) for them and their child.
even if born after 2009, if they weren't warned about these issues, they could win cover too. 15/
even if born after 2009, if they weren't warned about these issues, they could win cover too. 15/
mentioning it to your GP would help, too. the latest diagnosed case in NZ is from 2019 (!) meaning some medical professionals here still don't know about it!
https://www.nzherald.co.nz/nz/woman-told-epilim-could-not-cause-cognitive-issues-in-baby/WZ3IZAJQYO6GTRF6KB5USWYYUA/ 16/
https://www.nzherald.co.nz/nz/woman-told-epilim-could-not-cause-cognitive-issues-in-baby/WZ3IZAJQYO6GTRF6KB5USWYYUA/ 16/
finally... a massive shout out to @facsnzawareness - Denise and Jacki have worked tirelessly to raise this issue to the attention of the authorities in NZ, and recently succeeded in getting the blister foils which epilim comes in marked with NOT IN PREGNANCY logos. 17/17
first tweet was meant to have two different images.. here is the second one about non-physical effects
