Talk:Dravet syndrome

Recommended and unrecommended AEDs

The article said Dravet could be treated with drugs "like phenytoin or carbamazepine" - I have removed that bit because many people recommend explicitly avoiding those drugs (see below). I made an edit but someone may well undo it so I'll try and put better info here.

Most people with an SCN1A mutation (and hence Dravet) will have a loss of function on their sodium channel and so should avoid AEDs that are sodium blockers - see here SCN1A Patients Advised to Avoid Sodium Channel Blockers. Although some missense mutations might lead to a gain in function of sodium channel. I suppose the best way to say it might be 'use sodium blockers with caution'.

The Dravet Foundation treatment page says common treatments are clobazam, clonazepam, leviteracetam, stiripentol, topiramate and valproic acid. It says the following are contraindicated because they may make seizures worse: carbamazepine, fosphenytoin, lamotrigine, oxcarbazepine, phenytoin, vigabatrin.

NICE (who write up the guidlines for the NHS in the UK) give a similar list of drugs to avoid. See section 1.9.9.4 in NICE guide to Epilepsies: diagnosis and management - it says "Do not offer carbamazepine, gabapentin, lamotrigine, oxcarbazepine, phenytoin, pregabalin, tiagabine or vigabatrin." 82.38.169.122 (talk) 17:05, 1 January 2016 (UTC)

Cannabis as an effective treatment?

Cannabis has been shown to have considerable efficacy in reduction of seizures and other symptoms of Dravet's Syndrome. It's actually a very well known issue- why isn't it mentioned? There is considerable evidence that attests to this- both anecdotal and empirical. — Preceding unsigned comment added by 76.200.118.133 (talk) 01:09, 13 June 2015 (UTC)

Name of article "Severe myoclonic epilepsy of infancy" or "Dravet syndrome"?

People have thoughts? Doc James (talk · contribs · email) 14:33, 2 July 2015 (UTC)

I checked the sources which this article cites and which can be read online. Among these sources, "Dravet syndrome" is the more common term. The current name is not inappropriate but moving the article to the other name could be done. Blue Rasberry (talk) 15:07, 2 July 2015 (UTC)

Dravet syndrome is more common on pubmed than both the full Severe myoclonic epilepsy of infancy or SMEI. I don't have strong feelings either way though. -- CFCF 🍌 (email) 15:09, 2 July 2015 (UTC)

Yes no strong feeling either. The world of medicine is moving away from naming stuff after people and towards using descriptive names. Doc James (talk · contribs · email) 15:14, 2 July 2015 (UTC)

I think we should have a vote to rename the article to Dravet syndrome. Andrea Carter (at your service | my evil deads) 20:04, 12 August 2015 (UTC)

Requested move 12 August 2015

The following is a closed discussion of a requested move. Please do not modify it. Subsequent comments should be made in a new section on the talk page. Editors desiring to contest the closing decision should consider a move review. No further edits should be made to this section.

The result of the move request was: moved. Jenks24 (talk) 11:20, 20 August 2015 (UTC)

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Severe myoclonic epilepsy of infancy → Dravet syndrome – Dravet syndrome is the common name of this disease. Andrea Carter (at your service | my evil deads) 20:16, 12 August 2015 (UTC)

With all the hype about medical cannabis and cannabidiol being a treatment for this disease, the effectiveness of which is beyond the scope of this discussion, more people are aware of this disease. Most certainly people are going to want to research the disease. Most non-professionals know of this disease as "Dravet syndrome." I propose we rename the article to Dravet syndrome. What do y'all think? Andrea Carter (at your service | my evil deads) 20:16, 12 August 2015 (UTC)

• Support blatant WP:COMMONNAME. sovereign°sentinel (contribs) 17:57, 13 August 2015 (UTC)

• Support As proposer. Andrea Carter (at your service | my evil deads) 21:39, 13 August 2015 (UTC)
• Weak support I am happy either way. I agree Dravet syndrome is more common and shorter so probably we should. The other name will likely not catch on. Doc James (talk · contribs · email) 22:01, 15 August 2015 (UTC)

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The above discussion is preserved as an archive of a requested move. Please do not modify it. Subsequent comments should be made in a new section on this talk page or in a move review. No further edits should be made to this section.

Well done RCT in the NEJM

I think it is reasonable to include a sentence or two from this NEJM study.[1]

User:Alexbrn I think it is an appropriate exception to WP:MEDRS as (1) this is a rare condition (2) this is a well done RCT (3) it was published in the NEJM.

Others thoughts? Doc James (talk · contribs · email) 01:54, 27 May 2017 (UTC)

This has attracted some comment from David Gorski[2]. Perhaps we could use that? I think it would be okay so long as we extremely cautious given the "weed the wonder cure" fringe narrative context for this topic. Alexbrn (talk) 07:06, 27 May 2017 (UTC)

This is basically the summary "This is a study that demonstrates that one chemical that can be isolated from marijuana has promise as a treatment for the epilepsy associated with Dravet syndrome... but it also has significant side effects" One can pull that from the NEJM study or the blog. Doc James (talk · contribs · email) 17:38, 27 May 2017 (UTC)

Sound good to me. Perhaps cite the article and link the blog as a laysummary? Alexbrn (talk) 17:41, 27 May 2017 (UTC)

Sure Doc James (talk · contribs · email) 18:17, 27 May 2017 (UTC)

ICD 10 coding

I have corrected the ICD 10 code from G40.4 to G40.3. Dravet Syndrome is not listed in ICD by that name but this is the code provided for Dravet Syndrome in the SNOMED CT classification browser. It is also the code you will find when you index trail epilepsy > myoclonic. Furthermore, the ICD 9 code listed is 345.1 which when you cross-map it to ICD 10 also gives you G40.3.

I hope this edit is acceptable, if anybody has contradictory sources that support the G40.4 code I'd be happy to review further. — Preceding unsigned comment added by Tattycakes (talk • contribs) 09:38, 1 November 2019 (UTC)