Here are some suggested organisations that offer expert advice on SN.
Sodium valproate and autism(10 Posts)
This was a bit of a shocker on the news this morning
20,000 people effected
I wonder how these huge numbers impact the increase in numbers of children with ASD?
And also how does it impact that link between epilepsy/bipolar in the family and an increased risk of ASD?
It's shocking, could actually be Thalidomide all over again.
And it begs the question as to what other connections have been missed?
I think it's abolsutely right that the warnings should be much more obvious and explicit.
I used to take sodium valproate for migraines and every time that my gp renewed my prescription, she would make it absolutely clear that I should not be trying to get pregnant while on it. She also insisted that I should be off it for at least 6 months before trying to conceive. The pharmacist was also good with the warnings about pregnancy.
However: Nobody EVER quantified the risk to me. As in 4 in 10 chance of cognitive disabilites or 1 in 10 chance of physical abnormalities. The leaflet's tiny print nobody really reads properly. And saying that it can be taken during pregnancy if there's "no safer alternative and only after a careful discussion of the risks" is so vague and sounds like a lottery depending on how risk averse your doctor is.
But this is not just some medicine to treat sever morning sickness. Seizures can be very dangerous and lifethreatening too, so many women likely don't have much of a choice if they want to have children. Just placing stronger and more explicit warnings on packages will probably only help for women like me who are/were taking it for migraines and other similar "off-label" type reasons.
I believe a large chunk of increased numbers in autism diagnoses can be explained by increase in awareness of what autism is and what the early signs are; decrease in shame linked to previous labels such as "refrigerator mother syndrome" causing more parents to seek diagnoses; increase in ability to recognise (leading to increased referrals by schools and health professionals) and increase in ability to accurately diagnose (and linked to this an increase in the number of adults being diagnosed); the relatively new "grouped" ASD diagnoses that now encompasses many previously seperately diagnosed disorders; the increased ability to recognise and diagnose autism in girls. So many things. I've been meaning to have a look at other diagnoses numbers in areas such as mental heath disorders. I wonder if there will be a similar increase linked to better understanding and recognition and the falling away of the shame that used to surround invisible disorders and disabilities.
I stopped taking sodium valproate in January and got a + preg test for my DD in June. I'm keeping an eye on her anyway, because she can sometimes display selective mutism for long periods of time - even in previously comfortable situations - and her emotions are very extreme sometimes over tiny non-issues. Now I'm wondering.… Did I stop early enough? Is there something there? I was on it for three years three times a day before that.
Thanks for this link @zzzzz
With autism and epilepsy it's all such a tricky area to explore cause and effect. It's known that there are strong links between autism and epilepsy so whilst SV has clear causal links to some disabilities the link to autism might not be the same. If there are genetic links between autism and epilepsy (very/highly possible?) then the SV may not be the causal factor, the maternal epilepsy might be (I'm only talking about autism, not intellectual and physical disabilities).
I need to reread it but 20,000 effected, I think 40% of whom are autistic is a huge number given the number of people with ASD in the uk (700,000?). I’m really not sure the “we are better at spotting autism” idea accounts for as big a proportion of the increase as people assume. Is the increase seen just in those “can pass for not” high functioning and excellent at masking, individuals? That wasn't the impression I was given at ds’s SS, nor by his paediatrician.
I wonder if it is a discrete presentation of ASD that is seen? What could this tell us about other presentations?
@Polter excellent point about correlation and causality.
@zzzzz thanks, I def need to read up on it more.
Can pass for nt ...sorry my iPad has updated to a weird new keyboard grrrrrrrr
I was on 1000mg daily with 2 of my children and they are thankfully perfectly healthy.. the risks weren't explained as much back in 2011 and 2012.
Now 13w with my third and I'm being taken off and moved onto a different drug. They will be checking me 4 weekly and I'll have specialist scans.
I have epilepsy. I'll be off SV by next week.
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