Talk:Epilepsy/Archive 4

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Archive 1

Archive 2

Archive 3

Archive 4

Suggest updating text about pregnancy in Complication section

This edit request by an editor with a conflict of interest was declined.

According In the U.S., epilepsy affects over 1 million people who can bear children. A consortium of epilepsy and reproductive care providers have recently consolidated up-to-date research about epilepsy and pregnancy, including related to anti-seizure medications, on a website aimed at both patient and clinician audiences. The site aims to correct misconceptions about safety issues and risks associated with bearing children if you have epilepsy. Updating and expanding on the text about pregnancy in the Complication section of this page would give people with epilepsy and their doctors a reliable place to start researching the implications of getting pregnant while managing epilepsy and medications taken to control it.

RobertAtkinson (talk) 22:37, 30 October 2023 (UTC)

Your organization's web site does not meet the requirements set out in WP:MEDRS for sourcing biomedical content. We cannot use it as a source, nor can we use the single studies you are otherwise citing. MrOllie (talk) 22:46, 30 October 2023 (UTC)

How would you suggest we get this important information into Wikipedia and take out out-of-date, misleading information, then? RobertAtkinson (talk) 15:41, 31 October 2023 (UTC)

By first finding a source that does comply with WP:MEDRS, such as a systematic review published in a MEDLINE-indexed journal. MrOllie (talk) 15:45, 31 October 2023 (UTC)

Hello, @RobertAtkinson, and welcome to Wikipedia. I have a question about the "out out-of-date, misleading information". These are the two sentences, right?

It is also dangerous when seizure occurs during pregnancy.
Certain anti-epileptic medications increase the risk of birth defects.

Are you actually saying that it is no longer considered dangerous to have a seizure during pregnancy? And that it is no longer true that any ASMs increase the risk of birth defects?

Looking at the suggested replacement text, it sounds to me like the old text is up-to-date and non-misleading, and the objection is primarily about the tone. The old text, though apparently accurate, doesn't sound reassuring, and the new one sounds positive and hopeful and hides the uncomfortable bits behind fancy words like "teratogenic" (which, when written in plain old English, means "causes birth defects").

It shouldn't be too difficult to find good sources on this. We might be able to create a whole section covering epilepsy ==In pregnancy==. This PubMed link offers several dozen possible papers to be cited (set to show only free-to-read papers, but WP:PAYWALLED sources are okay). In that list, PMID 37647086 is from Cochrane, which is generally a good option, if they come to a conclusion. At a glance, it looks like sodium valproate is not your friend (9% of babies have major birth defects, or about four times the background rate). It looks like carbamazepine, phenobarbital, and phenytoin approximately double the risk. PMID 35191408 recommends IUDs to prevent pregnancy, and lists some studies about cognitive/behavioral outcomes. I think there's a lot that could be said about this subtopic. WhatamIdoing (talk) 23:45, 31 October 2023 (UTC)

Exactly! It's misleading because it leaves out important and more nuanced information (also, the term "anti-epileptic" is outdated according to the clinicians I've been working with). I'd love to see a complete Epilepsy & Pregnancy page that covers the topic in more detail. We'll look into finding more Wikipedia-compliant sources to cite.

Thanks for your feedback.

(btw, "Teratogenic" is a pretty standard medical term and in keeping with the general level of medical info prevalent in Wikipedia). RobertAtkinson (talk) 14:15, 1 November 2023 (UTC)

I think we could sustain a whole Epilepsy and pregnancy article, but for right now, let's just try for a section towards the end of this one. It won't be perfect, but it'll at least be better than where we started. We'll get there eventually.

(Wikipedia uses so much technical jargon that a lot of people can't understand it. I'd like to avoid that problem here.) WhatamIdoing (talk) 17:12, 1 November 2023 (UTC)

Please have a look at the newly centralized Epilepsy#Contraception and pregnancy section. If there are key facts that are missing, please let me know. WhatamIdoing (talk) 18:31, 1 November 2023 (UTC)

Thanks for taking this on. This is a great edit. I do still believe that this topic could be its own page, but consolidated section is a great start. RobertAtkinson (talk) 15:21, 12 November 2023 (UTC)

I'm pretty sure that we could, and if we add much more, we'll probably need to either split the section (==Contraception== and ==Fertility and pregnancy==) or copy all of it over to a new, shorter article (Epilepsy and fertility, since it's bigger than just pregnancy per se?) and significantly reduce the content in the main article.

There are advantages and disadvantages. People may be more likely to read the material in the main article (=higher page views), but keeping it here constrains the volume we can contain (it would be unbalanced to have the article be mostly about pregnancy and a tiny bit about everything else). I think the split will happen when we find new information that really needs to be included, and doesn't "fit". Or: check back when this section is about 600 words, and copyediting can't make it more concise. WhatamIdoing (talk) 17:44, 12 November 2023 (UTC)

Thanks for the guidance. I think have more than enough good information for an Epilepsy and Pregnancy page that I've updated to fit the community guidelines (e.g., using PubMed as source versus linking directly to primary sources). I'm honestly a little leery based on my initial attempt at standing up a new page for this topic and missteps I've made. Do you have any advice on how to proceed in getting a dedicated page on Epilepsy and Pregnancy submitted aside from simply trying again? I really appreciate your help with this. RobertAtkinson (talk) 18:20, 19 November 2023 (UTC)

Well, why don't you start by making a list of possible sources at User:RobertAtkinson/Epilepsy and pregnancy? We can work on it together. The best sources are review articles and medical school textbooks. Try this link to PubMed as a starting point. WhatamIdoing (talk) 17:29, 20 November 2023 (UTC)

I posted a new version of a Epilepsy and Pregnancy article here using PubMed sourcing. User:RobertAtkinson/Epilepsy and pregnancy Let me know what you think and thank you! RobertAtkinson (talk) 14:46, 4 December 2023 (UTC)

That's looking pretty good, @RobertAtkinson. "Management of epilepsy during pregnancy" and "Teratogenicity of antiepileptic drugs" are both review articles, which are ideal sources.

There are a few places where I'm not sure what the source is. We'll get fewer complaints if the citations are repeated. When you use the same source for multiple paragraphs, then repeating the citation is easy to do in the visual editor: Open it, put your cursor at the end of a paragraph, click the "Cite" button, and then the "Re-use" tab in the dialog box. Click on the source that this information came from, and it will add an extra copy.

The last source, which links to the Wikipedia article, is not a good idea. I suggest replacing it with PMID 35163292 or PMID 31845215 (or both). The same sources could also be put in Autism spectrum, since it's presently uncited and therefore at risk for someone wondering whether it was just made up.

I think you've done a good job of showing that the subject is notable. There's still work to do (e.g., adding links to more of the subjects mentioned in the text, like a link to Pregnancy), but you could WP:MOVE it to the mainspace after a little more work on the sources. Would you like to do that, or would you like me to do it for you? (I'd wait until you had a chance to add more sources.) WhatamIdoing (talk) 18:34, 5 December 2023 (UTC)

Thanks again for the thoughtful feedback. I've added more sourcing and changed the link you advised I update. I do wonder how far you'd advise going on linking to subjects when those subjects are repeated throughout. Every instance of "pregnancy" feels like too much. RobertAtkinson (talk) 23:10, 5 December 2023 (UTC)

@WhatamIdoing I did some work on the sourcing the subject linking. Let me know if we're in a spot to the move to the mainspace. Thanks again for your guidance. RobertAtkinson (talk) 21:09, 11 December 2023 (UTC)

Let's do this! See the new article at Epilepsy and pregnancy. WhatamIdoing (talk) 19:05, 13 December 2023 (UTC)

Every instance of any word is too much. Usually, we do the keywords in the introduction, and the first use of a word in the rest of the article (or sometimes the "first important use", if something gets mentioned in passing but then has a whole paragraph about it later). I've tagged the article to have links added. That might encourage others to take a look at it. I expect that the first use of any specific drug will end up linked, and probably some other things, but we can wait a couple of days and see what happens.

I think we need to spend some time adding sources (primarily re-using the ones that are already there). WhatamIdoing (talk) 19:23, 13 December 2023 (UTC)

This looks great! Thank you so much in guiding me through the process and getting this live. I'll also be doing some linking up of topics when I have a free second. RobertAtkinson (talk) 15:34, 14 December 2023 (UTC)

I tagged it to have links added, and a couple of newer editors had a go at it. I think the next important step is to get a citation at the end of every number or important fact. Anything without a little blue number at the end could theoretically be removed by anyone at any time, so adding the sources will protect the content. WhatamIdoing (talk) 16:38, 14 December 2023 (UTC)

Introducing User:Johnbod at ILAE

User:Johnbod at ILAE is an alternative account for User:Johnbod. I will be using this account for edits connected with epilepsy, as I will be working over roughly the next year with the Wikipedia:ILAE Wikipedia Project, which has been running since 2020, aiming to improve the coverage of epilepsy-related articles on Wikipedia and is overseen by the International League Against Epilepsy.

I will be working together with ILAE medical specialists to improve the articles. Please let me know any questions. Johnbod at ILAE (talk) 02:03, 21 March 2024 (UTC)

People at risk of death

"People with epilepsy are at an increased risk of death. This increase is between 1.6 and 4.1-fold greater than that of the general population."

Every person ever born are "at risk of death", in fact it's our only cast iron guarantee. It would be good to rephrase these sentences more sensibly. Why no talk page contents list? Anna (talk) 21:38, 8 February 2024 (UTC)

Hi, Anna! I have made some updates to the section to make it more sensitive while retaining the necessary information. I plan to continue working on this section as I believe there are more aspects that need reorganization and updating. I will be looking into newer articles and sources to ensure the information is as current and comprehensive as possible, especially regarding SUDEP. Pwoli (talk) 01:28, 18 July 2024 (UTC)