Epilim & autism?

I diddnt know till this evening that this epeleptic drug can cause autism, now though i did not take this when pregnant,do you think this could stay in your system or do something that causes it? i started taking this medication when i was around 15 to the age of 18 and wondering if this possibley could be the cause? however it should have well dissapeared out my system????/

  • Hi,

    Probably a bit too late to post this on the forum but I have Fetal Valproate Syndrome, I know a couple of charities who could help you re a diagnosis: http://oacscharity.org/

    http://facsa.org.uk/

    All the best xxx.

  • recombinantsocks said:

    One of the things that came out of the research papers on the possible impact of epilim was that they confirmed the value of taking some supplements during pregnancy. In particular they found that babies' IQ was boosted measurably by taking folic acid.

    www.nhs.uk/.../vitamins-minerals-supplements-pregnant.aspx

    Hopefully, you haven't taken sodium valproate ?

    Sodium valproate or valproic acid is the active component of epliim, and a number of other trademark drugs I've listed in previous postings on this thread.

  • One of the things that came out of the research papers on the possible impact of epilim was that they confirmed the value of taking some supplements during pregnancy. In particular they found that babies' IQ was boosted measurably by taking folic acid.

    www.nhs.uk/.../vitamins-minerals-supplements-pregnant.aspx

    Hopefully, you haven't taken sodium valproate ?

  • Hi Longman,

     

    Thanks for your question. I've put it forward to the community manager.

     

    happy New Year and all the best.

     

    Kalliopi

  • www.nhs.uk/.../Causes.aspx

    The above link is to a web page on NHS Choices - Autistic spectrum disorder - causes

    This looks at various risk factors - genetic, environmental,psychological, neurological and other health conditions.

    Under Environmental they include "exposure to medications such as sodium valproate (a medication sometimes used to treat epilepsy) during pregnancy".

    They also suggest being born before 35 weeks - premature, and alcohol taken at preganancy, but surely these relationships are easier to pin point. Why cannot I find sodium valproate/valproic acid mentioned on the NAS website?

    On genetic factors they say no specific genes linked to AHD have been identified. Siblings of a child with AS have an increased risk, but that's as far as it goes (maybe parents might show some traits, but there doesn't seem to be any evidence to support the idea that parents pass it on).

    The psychological factor is Theory of Mind, whether the disposition comes about through that. The neurological factors relate to "over connection" in the cerebral cortex, amygdala and limbic system, which they link with routines and obsessions. That does sound a bit like the kind of changes sodium valproate might be involved with.

    They list a number of other medical conditions which may be implicated: fragile X, rett syndrome, tuberous sclerosis (rare), neurofibromatosis (affecting nerve ends), muscular dystrophy, down's syndrome, cerebral palsy, infantile spasms (a type of epilepsy), and intellectual disability.

    There are in addition losts of new theories around. I just find the lack of references to sodium valproate given the evidence there is an issue, and a risk, in forums on autism.

  • Some people may respond regarding my previous posts on this that the numbers of people taking these drugs during pregnancy may be fairly small, and has probably been reduced in the last five years because of increased awareness of the risks.

    In terms of the overall factors influencing occurrence of autism, those who have used the drug may be too few to have had any real effect.

    But it isn't just about whether a drug has increased risks of autism, it is whether that causal connection helps to identify other causes of autism.

    The spina bifida connection is different because the side-effect of the drug affects the spine, whereas with autism it may be to do with the neural transmitter modification.

    However whatever consequence sodium valproate/valproic acid has, is the mechanism involved a clue to what actually causes autism more generally? Can we learn something from this about the causes of autism? Could this better focus autism research?

    Science involves identifying links and connections. Proving is often a long drawn out and tedious process of gathering difficult data and carefully analysing the results. But identifying the connections to research in the first place is often down to observation and recognition of what is possible.

    The worrying thing here is that, despite evidence that seems to suggest it, the impact on autism isn't discussed anywhere, or at least not here in the UK, and not anywhere on the NAS website. Evidence like this has to be around for people to spot such a connection in the first place.

    By keeping things hush hush, how many opportunities to make key realisations about the causes of autism are being missed?

  • One of the areas where there is information is the relationship between valproic acid and spina bifida. I'm left wondering why it is more openly discussed with regard to spina bifida than for autism.

    This Canadian site is for an academic paper in CFP MFC journal of the College of Family Physicians of Canada, published in 2006 (ie 8 years ago!). www.ncbi.nlm.nih.gov/.../

    Soon after it was introduced as medication for epilepsy it was observed that there was a much higher risk of spina bifida births. There is data going back fifteen years before 2006, and the risk seems to have been formally recognised in 2005. The risk increases with dosage.

    Reading elsewhere, the risk seems to have been known about in French medical publications since 1982.

    Similar but less marked risks have been noted for another epilepsy drug Carbamazepine found in Carbatrol, Epitol, Equetrol and Tegretol.

    Valproic acid is also associated with incidences of cleft palette, extra fingers or toes and male urinary tract malformations.

    Why is so much known about this aspect of risk, and so little mention made of its implications for autism?

  • I'm still trying to get a better understanding of the connection between this medication and autism. The trouble is most of the information I can get is American, and sites where there is a UK version, the UK site is a total blank.

    Sodium valproate (used in epilim) is to the best of my understanding the same as valproic acid (or devalproex which is converted in the stomach to valproic acid). Valproic acid is used in the treatment of bipolar disorder, migraines and to reduce aggression in children with ADHD. It includes preparations such as Depakote, Depakene, Stavzor, Valparin and Valpro

    It apparently works by increasing the production of gamma-aminobuytric acid, which is a neurotransmitter to facilitate connectivity. Its value in treating migraine is in reducing pain by this mechanism. For epilepsy it reduces breaks in connectivity related to the risk of seizures.

    The thing is, in America they advise mothers potentially in pregnancy to exercise birth control, ie terminate the pregnancy/avoid getting pregnant while taking this medication. It is known to harm the foetus and cause development problems, which may include spina bifida, bone growth distortions affecting for example face shape, and developmental problems eg autism.

    We need to know more about this, and it shouldn't be a lay person, like myself, searching around websites. So I must emphasise I'm just an unqualified adventurer in this and may have got things wrong. But I feel I do need to point out the need for better understanding.

    Not least in my mind are the difficulties parents are still having getting diagnoses. Autism still isn't being taken seriously enough, and all the research with electrodes and MRI scans of adults about their word interpretations or daydreams isn't getting us any further forward, even if it does help pay for big expensive labs that might one day make a useful breakthrough.

  • longman said:

    There have been discussions about loss of awareness, which seems to be a response to sensory overload. This might seem like epilepsy but doesn't produce the same results as tests for epilepsy would elicit. It isn't a loss of consciousness or control, simply a loss of awareness.

    It is possible therefore that someone reporting these fade outs was treated for epilepsy in error.

    Now I guess there's going to be a total blank response to this, but someone surely can come to my rescue with similar experiences. I get these fade-outs, and was tested negatively for epilepsy at one stage, long long before I was found to be aspergers.

    I seem to be able to disconnect from my surroundings sometimes. I get engrossed in my own thoughts and people can speak to me, but I do not hear them. This is unusual, as normally I am aware of everything and cannot screen out background noise. It is all or nothing. I think this happened more when I was young, and people thought I was being rude and ignoring them.

  • The story about misdiagnosis of epilepsy resurfaced a few years back (2006)

    news.bbc.co.uk/.../4652652.stm

    Most people who have been diagnosed with epilepsy will really have had epilepsy though!

  • Do you think you can see more similarities now between what your son does and what you do? It is surprising (alarming even) how behaviour gets passed through the genes in the same way as all of the physical charactersitics that make us all different.

    In my opinion, the more that you can understand about autistic traits the more you can deal with them better.

  • My thoughts are even if i had this i would probably not get diagnosed,as my son has had more obvious problems and not been diagnosed yet,so probably no point going there.

    As for epilepsey i dont think i ever had it to be honest, it got diagnosed and i was given tablets however i do not belive that was it,i dont know what it was however i am sure it was not epilepsy. xx

  • Hi MO4B

    The online test is fairly reliable but not the same as a proper diagnosis. I think it's quite possible to have both epilepsy and autistic traits but you might like to consult your gp to discuss this.

    I think there was a case of a doctor who was diagnosing epilepsy in lots of cases. these conditions are hard to spot and hard to distinguish from each other sometimes. I managed to evade diagnosis for 56 years and there are lots of other people who slip through the net. I don't feel bad about this as it means that we are not at all far from normal in a lot of ways.

    What are your thoughts at this point? I feel more than slightly responsible for taking you down a route that has ended up with a distinct possibility of you being a member of our "club"

  • Theres another thing,i always feel like people dislike me or i dont fit in?

  • Longman i dont know,i know there was something a few years back where it was on the news that lots of people were treated for epilepsey when they werent epileptic.

  • 32-50 indicates a strong likelihood of Asperger syndrome or autism.

    I got 36

    I often find it very hard to read these forms because of the way they are written,when we were at cahms at the end i had to fill in a questionaire and because of the way it was written it look me longer to fill in the answers, all because of the way it was worded.

  • But some aspects of autism could be confused with epilepsy - not that you'll find this in the Triad of Impairments.

    There have been discussions about loss of awareness, which seems to be a response to sensory overload. This might seem like epilepsy but doesn't produce the same results as tests for epilepsy would elicit. It isn't a loss of consciousness or control, simply a loss of awareness.

    It is possible therefore that someone reporting these fade outs was treated for epilepsy in error.

    Now I guess there's going to be a total blank response to this, but someone surely can come to my rescue with similar experiences. I get these fade-outs, and was tested negatively for epilepsy at one stage, long long before I was found to be aspergers.

  • Hi MO4B

    Thanks for coming back to the thread!

    There are types of epilepsy that occur in childhood that people then grow out of e.g. www.epilepsy.org.uk/.../childhood-absence-epilepsy so you sound as though your history fits that pattern. Note that sodium valproate is still recommended by that page.

    You do sound as though you tick quite a few boxes on the autistic spectrum. Have you tried doing the test at http://aspergerstest.net/ ?