Talk:PANDAS

Treatment updates

An audit done by Dr Tim Ubhi from The Children's e-Hospital in 2018/19 showed that 90% of family general practitioners were unfamiliar with this condition despite active campaigning by parent groups across the United Kingdom. Treatment guidelines were published for the first time in the United Kingdom in 2018 and had contributions from major children's centres including Alder Hey Children's hospital, Birmingham Children's Hospital, The Evelina Chidlren's Hospital and The Children's e-Hospital. — Preceding unsigned comment added by The Children's e-Hospital (talk • contribs) 15:10, 24 April 2020 (UTC)

References

I don't find any journal-published literature reflecting new UK guidelines, but I do find these MEDRS-compliant reviews that could be used:

• Thienemann M, Murphy T, Leckman J, et al. (September 2017). "Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part I-Psychiatric and Behavioral Interventions". J Child Adolesc Psychopharmacol. 27 (7): 566–573. doi:10.1089/cap.2016.0145. PMC 5610394. PMID 28722481.
• Farhood Z, Ong AA, Discolo CM (October 2016). "PANDAS: A systematic review of treatment options". Int. J. Pediatr. Otorhinolaryngol. 89: 149–53. doi:10.1016/j.ijporl.2016.08.008. PMID 27619047.

SandyGeorgia (Talk) 20:40, 24 April 2020 (UTC)

Note PMID 29309797 is 2018 treatment review SandyGeorgia (Talk) 17:23, 23 November 2021 (UTC)

This BMJ page references UK treatment guidelines that I am still unable to locate. SandyGeorgia (Talk) 17:26, 23 November 2021 (UTC)

Colin would you have any leads on the post just above this one (trying to determine if these UK treatment guidelines exist). SandyGeorgia (Talk) 17:34, 23 November 2021 (UTC)

The guidelines appear to be this document. I can't find any NICE guidelines on the matter. I thought www.e-hospital.co.uk looked a bit dodgy since it initially appears to be an online children's hospital that I'd never heard of. Then it become clear this is PANDAS specific. I saw the badge rating it "outstanding" by the Care Quality Commission. This does appear to be a valid claim. I can't get hold of the BMJ article but many of the authors are the same as those of the guidelines, who are presumably members of the "The UK PANDAS and PANS Physicians Network". On googling for that, I discovered this statement by PANS PANDAS UK that appears to be a response to The British Paediatric Neurology Association: Consensus statement on childhood neuropsychiatric presentations, with a focus on PANDAS /PANS (PDF). I also found PMID 33848371 aka "Clinical guidance for diagnosis and management of suspected Pediatric Acute-onset Neuropsychiatric Syndrome in the Nordic countries" (full text here). -- Colin°^Talk 10:31, 24 November 2021 (UTC)

Thanks, Colin! Very nice—I was unable to find any of that.

So, it appears that the situation in the UK and Nordic countries mirrors what is going on in the US and Canada, as summarized now by the recent sources in the article. We have multiple recent reliable secondary reviews advising against treatments that are recommended by networks of physicians, who as the Gilbert review points out (and is covered in the Spectrum News non-MEDRS deep dive) may be engaged in advocacy and attempts to influence governmental policy. I took a deeper dive into all of that yesterday, and it looks as if the approach may be to get networks of internet-armed parents to influence legislators. I wonder what the relationship is between the UK Physicians Network and the (US) PANDAS Physicians Network? Your sources mention they quote certain groups extensively.

And, for three and a half years, this article contained text cited to a press release (from a journal, weird, and the NIMH, from whence this hypothesis originated), advancing same. The article is still a mess, because it alternates between getting no attention and getting hit by advocacy edits, and it appears that advocacy is again on an upswing. SandyGeorgia (Talk) 16:42, 24 November 2021 (UTC)

This misleading and poorly sourced statement (sourced to a press release) stood for more than three years. Now sorted, see here. SandyGeorgia (Talk) 01:46, 24 November 2021 (UTC)

Considering what the treatment reviews have to say about immunomodulatory therapies and prophylactic antibiotics, this taxpayer-funded bio is an interesting read. SandyGeorgia (Talk) 02:23, 24 November 2021 (UTC)

The move in the UK has been to reduce the need for antibiotics whist accepting that most children with PANDAS respond well to a short course of antibiotics. The guidlelines are linked hereNeoSocrates (talk) 10:09, 24 June 2022 (UTC)

That is a webpage from a group of patient advocacy organizations ... not WP:MEDRS. SandyGeorgia (Talk) 10:52, 24 June 2022 (UTC)

The streptococcal basis for neuropsychiatric disease

The discussions so far have been focused on the concept of PANDAS as "new" or "controversial" diagnosis but I would argue that we have simply re-labelled the neuro-psychiatric features that we saw in post-streptoccal conditions such as rheumatic fever and Sydenham's chorea. There is a huge amount of resistance from the world of Tourette's and autism (understandably) but if you stand back and look at the history of post-streptococcal neuro-psychiatric diseases, the case for PANDAS is a reasonable one. Perhaps we should call it post-streptococcal basal ganglia encephalitis? When I get a moment I will update the page but I think you should also consider the work of Xu et al (Pettinger's group) who have identified the molecular targets in PANDAS - The cholinergic inter-neurones. NeoSocrates (talk) 09:59, 24 June 2022 (UTC)

Please become familiar with Wikipedia's guidelines for medical content before editing the page; your personal hypotheses are unsupported by reliable medical sources. PMID 32539528 is a primary study (associated with Swedo); as with most of the work coming from that group, secondary reviews present a broader understanding of those primary studies, with most past conclusions unsupported and controversial. You can find secondary sources via the link at the top of this page; Wikipedia does not lead, rather follows, secondary sources and cannot use primary studies in a case like this. SandyGeorgia (Talk) 11:06, 24 June 2022 (UTC)

Wikipedia:Wiki Ed/University of Wisconsin-Eau Claire/ENGL 312 (Summer 2022)

Ian (Wiki Ed), this is a controversial and contentious topic, in which a solid foundation in medical editing and WP:MEDRS is essential. I would encourage Bspoerl to seek another topic where their edits are more likely to stick. It would be a difficult topic for a graduate medical student. SandyGeorgia (Talk) 03:56, 6 July 2022 (UTC)

Okay, that is what I was thinking. Thank you! Bspoerl (talk) 13:40, 6 July 2022 (UTC)

Other Pysical and Psychiatric Symptoms

In this article the following symptoms have been mentioned; tics, obsessive–compulsive or tic disorder, emotional lability, enuresis, anxiety, and deterioration in handwriting.

Other common symptoms include psychosis like symptoms (eg. delusions, hallucinations, and drastic personality changes,) eating disorder symptoms, sensory sensitivity, and reverting to childlike behaviours.

Asexual amanita (talk) 19:22, 9 January 2023 (UTC)

sources

Please do not blank other editors' text: restoring ...

I have expanded the list from Wilbur, 2019. Sources compliant with Wikipedia's medical sourcing guidelines are needed for adding anything beyond that. I do not find recent MEDRS sources which mention delusions, hallucinations, dyslexia and dyscalculia specifically (see WP:UNDUE). SandyGeorgia (Talk) 14:11, 10 January 2023 (UTC)

The sources you added *after* blanking my response either are not MEDRS sources or do not contain the text mentioned. Again, to mention the specific symptoms above they should be included in a recent secondary review. SandyGeorgia (Talk) 18:50, 10 January 2023 (UTC)

References