Epilim & autism?

P,s all i wondered was if that it could cause some side effect in your body that could cause you to have a child with autism,i had actually never heard of it before untill i read it somwehere a couple of days ago. Thats when i thought about it.

P,s all i wondered was if that it could cause some side effect in your body that could cause you to have a child with autism,i had actually never heard of it before untill i read it somwehere a couple of days ago. Thats when i thought about it.

Oh and the fact that i can be cutting and have to be truthful,i find it extremeley difficult when i know something is wrong and that i shouldnt say anything,however feel compelled too,and i also actually swing through having empathy for distant people, like yesterday a woman hung herself localy and that made me feeel eally bad, however on most ocaasions i find it extremley hard to have empathy.

Not so long back we went to a funeral of a young lad that had died of cancer and whilst everyone was crying,i diddnt feel anything.

Hi i did take eplim for epilepsey,well they told me i had epilepsy,however am not so sure it was epilespey i had,if so why did it dissapear? i used to get quite light headed a lot,however it dissapeared.

Would i say i had traits,yes possibbley,i find absolutely nothing funny what so ever,i smile because i know i have too,not because i feel happy, in fact i cant tell you the last time i felt happy.

I have to be punctual for everythig i cannot stand to be late for anything.

I try not too meet peoples eye contact,although this could be due to a fact i had an accident many years ago with my eye.

I actually do not feel a lot of emtions,its like i am doing things because they have to be done if that makes sense.

However maybe im just depressed because of the situation?

There remains the issue whether taking epilim (sodium valproate) during pregnancy increases the risk of autism.

Another site referring to this in November last year is www.mhra.gov.uk/.../CON336719   MHRA is the body that registers and regulates drug use.

It is headed "Sodium valproate special reminder on risk of neurodevelopmental delay in children following maternal use - not for use in pregancy unless there is no effective alternative"

It is then clearly stated that it can cause autistic spectrum disorder, and that it "should not be used during pregnancy and in women of childbearing potential unless clearly necessary".

The risk of an abnormal birth is 2 to 3 times higher than for those not taking it.

Sodium valproate has been prescribed for epilepsy and bipolar disorder since 1973. It was prescribed during pregnancy to prevent seizures, so as best as I can determine, to pre-empt the possibility of eliptectic responses during pregancy, rather than that a mother was known to be predisposed. Was it used unwisely?

The thing I don't understand is why the NAS website seemingly knows nothing about this. I searched both sodium valproate and epilim on the search function on the home page and couldn't find it.

Surely something this important to understanding autism is fully known to NAS and to researchers studying the causes of autism?

NAS Moderators - can you explain this?

The possibility that the epilem caused the autism in this case is extremely low or negligible. MO4B had at least one other child between the epliem exposure and the birth of her latest child so the risk from that source must be extremely small. It isn't absolutely impossible since we know that we don't know what caused it. The risk is so small that it is not worth worrying about in my opinion.

Ruling one possibility out without suggesting an alternative reason leaves someone in an unfortunate position. If the epilem is ruled out then isn't Mo4b likely to be worrying that something else that she did is responsible? Just saying that the autism wasn't caused by epilem and it wasn't caused by the MMR vaccine leaves people with a quandary. Suggesting a possible alternative cause isn't, in my mind too outrageous a step to take. This is how conversations evolve and new knowledge is exchanged. Her question was, at first reading, related to epilim but the deeper question that is troubling her is what caused the autism in her son. Having drawn a blank with epilem then it is reasonable, having exhausted that as a possibility, to widen the search.

MO4B hasn't commented on anything we've said and I would welcome something from her to say whether what we are saying is helping or hindering.

The research that caused this alarm in the first place was a prospective observational study that compared outcomes following administration of various anti-epilepsy drugs. It is not a randomised controlled trial where subjects were allocated different drugs at the start. The confidence intervals of the analysis are wide enough to allow that epilem made no difference - they have not disproven the null hypothesis.

Would you agree with me that epilim cannot have caused her son's autism because she wasn't taking it while she was pregnant?

Whether it was inherited is surely a different discussion thread?

Longman, it seems to me that there are two problems with your analysis.

Firstly, I wasn't deducing any facts. I was trying to infer possibilities. I made repeated use of words that imply possibility rather than certainty. For example "my guess", "could also mean", "There are lots of possibilities here", "we know that we don't know what caused the autism in her son", "probably"

Secondly, if there were a genetic link between mo4b and her son's ASD then I still made no reference to blame or responsbility for that inheritance. I am fairly sure that I inherited my ASD from my father, and his father and his father before him. It makes no sense to me to blame any of these individuals for something that they had no knowledge of or any way of acting to avoid the passing on of the genes. If M04B passed on some genes that resulted in her son's autism then she had no way of knowing and avoiding that outcome. She made no act of commission or omission that carries any guilt whatsoever.

I'm simply advising caution.

But to be specific, the paragraph that concerns me is in your Saturday 18.22 posting that opens by quoting me suggesting epilepsy was a red herring.

"Mo4B described epilim as an epileptic drug........My guess is she was taking it for epilepsy......there is am underlying link......and the autism that has surfaced in her child".

I don't think it was right or proper to make those deductions.

MO4B,

I'm slightly baffled by Longman's use of the word "blame". I certainly didn't intend that you should feel responsible for your son's autism. I am really sorry if I caused any offence. I would agree with everything that Marjorie said about trying not to feel guilty and moving on and dealing with the future.

@Longman: What was it that I said that implied blame? I know that I can make mistakes and that I can offend people sometimes but in this case I am a bit baffled. Perhaps you could explain why I have given offence?

Well mumof4boys772 shouldn't feel obliged to tells us, which should be a confidential matter. 

It doesn't matter why she was taking it as she took the medication a long time before her son was born.

Recombinantsocks seems to be proposing, that as epilepsy is sometimes comorbid with autism, MO4B772 had autism (by inference she took epilim because of autism and not depression or migraines), and passed it on to her child? Its rather a long shot.

Some parents who are diagnosed with autism have children who haven't got autism.

Could we please drop the generational autism blame culture.

longman said:

The epilepsy may be what's termed a "red herring" here, unless mumof4boys772 was taking it for epilepsy. asnd even then it isn't relevant.

It may or may not be a red herring. Who is to say what is relevant or not? I am only trying to highlight information that may help to understand where her son's condition came from.

Mo4B described epilem as as epilectic drug and that she took it from ages 15-18. My guess is that she was taking it for epilepsy. However the  use of the drug for the other conditions could also mean that there is am underlying link between the underlying condition, that was being treated, and the autism that has surfaced in her child.

I, personally, think that there is some considerable comfort to be gained from understanding that autism is a stable and relatively benign condition that does not progress with age. Moreover, the condition responds well to care and consideration from the people around and from the person concerned getting a better understanding of what are the triggers and aggravating factors that can make the difference between entirely unbearable life and entirely managable and successful life.

There are lots of possibilities here. SOI raises another interesting point about possible common factors with a genetic condition that could conceivably be related to all sorts of brain function conditions. I think that it is fair to say that we know that we don't know what caused the autism in her son. There is very little to be gained from her beating herself up for a drug that was taken some years ago that probably had nothing to do with her son's condition.

The factor all these issues have in common is an association with MTHFR gene mutations. Of which I have many - so very interested in it.

doccarnahan.blogspot.co.uk/.../mthfr-gene-mutation-whats-big-deal.html

Epilim knocks out folate. Anyone taking it is advised to take folic acid supplements, as are pregnant women. However those with MTHFR mutations (30-40% of the population) cannot metabolise synthetic folic acid and one theory is that the unmetabolised folic acid cause issues. Which will vary depending on level/genetics/diet.

Personal opinion is that as a precaution, supplement manufacturers should be forced to use the bioavailable (more expensive) form methyfolate rather than synthetic folic acid. At least until more is known about MTHFR - it is a very new field of research.

The epilepsy may be what's termed a "red herring" here, unless mumof4boys772 was taking it for epilepsy. asnd even then it isn't relevant. It is also used to treat bipolar disorder and depression, and even migraines and is given to pregnant mothers to prevent seizures, which is the primary reason why it could affect newborn children.

However OP took it earlier in life, not during pregancy, and its not likely that it had any impact more than a few weeks after ceasing the medication. 

The occurrence of epilepsy comorbid with autism isn't at issue here, only that scientiists are now suggesting that if taken during pregnancy epilum ccould be a factor in autism in the child conceived.

I would look at the links between epilepsy itself and autism before worrying about the drug. Perhaps the close monitoring of people taking the drug revealed autistic traits that otherwise wouldn't have been noticed?

www.autism.org.uk/.../epilepsy.aspx

MO4B, if you have epilepsy then perhaps you also have some mild autistic traits too?

I should add that the background frequency of autism births runs at about 1.13%. At first that might look like more than doubling the incidence.

However the Danish Study was from 1996 to 2006, a twenty year span. They were claiming five times the risk, but had a much lower background incidence figure, possibly averaged over the last thirty years.  The Liverpool University study showed a higher risk, but for a much smaller sample, about a twelfth the size.

Had these figures had that impact we ought to have seen significantly higher incidence over the Danish timescale back to 1996. It might be though that this figures in the increase towards the current 1.13% in that timescale, but really a great deal more research would be needed.

The drug has been taken by large numbers of women at pregnancy for more than thirty years. What may be important is the proportion of pregnant women taking it, which I couldn't readily find. If it was an issue I would have thought we would have heard a lot more about it.

NAS at least should have made an issue of it.

The media does enjoy dropping in these scare stories, but their editors don't have to think about the impact of their sensationalist accounts on parents. This story seems to have been fronted recently by the Daily Mail.

There was a report earlier this year www.epilepsy.org.uk/.../new-study-links-sodium-valproate-autism

Its the sodium valproate in epilim that's the issue. The Danish research shows an increased risk but doesn't advise mothers not taking this medication during pregnancy. In other words the beneficial effects of the medication are considered vastly more important than increased risk of autism births which is disproportionately small.

There was also a study in the north of England by the Department of Medical & Clinical Pharmacology at Liverpool University www.epilepsy.org.uk/.../epilim-and-pregnancy

They claim taking it made children more likely to be born with autism, ADHD or dyspraxia. Epilim alone incurs six times the risk, and with other epilepsy medications ten times the risk. Of 415 children, 19 had developmental problems by the age of 6, 12 being autism and 4 with dyspraxia.

The study population was small, however (as is often the case with these researches) and doesn't necessarily rule out other factors. 12 out of 415 is under 3%.

NAS however doesn't seem to have commented elsewhere, and you'd expect Government comments if serious, and there have been 8 or 9 months since these stories were reported. The fact it has only been picked up by papers like the Daily Mail suggest the impactt is not considered significant.

It is too easy to feel guilty about these things. It is a big part of motherhood to feel responsible for the way our children turn out. There are hundreds of crazy theories about what may cause asd and most of them are nonsense. MMR, for example was blamed for a while.

Most drugs are out of the body in a fairly short time, or reduced to an insignificant amount. I think that you would probably have to be taking a drug, while pregnant, for it to have any effect.

Heredity has some effect. Perhaps you have a relative with asd.

I am inclined to think that it is better to look forward, not back. Even if there was some small thing that you did, which contributed a little to the outcome, you did not know, cannot change what is past, and should focus on accepting and enjoying your children, just as they are. Focus on the needs of the family today and into the future.

Guilt will undermine you and contribute nothing to your wellbeing for the future.