PANDA Mama
@PandaMama2024
Parent raising awareness of #PANDAS #PANS ~ #BrainInflammation in children triggered by #infection / #virus. #NoMoreLostChildren. #ChangeIsComing
#PansPandasHour my husband developed endocarditis from strep throat as a teenager, hospital recognised & treated, he has a mechanical heart valve. Our child developed #pandas from #strep affecting her brain but did the same hospital treat her? NO, she was sent to camhs.🤔🤔
Hoping this monumental work from @PANSPANDASUK Steering group inspires @LSCICB to engage more meaningfully— a thank-you note isn’t enough (especially when it gets our names wrong!) #deedsnotwords @Andrew4Pendle @DrGarethEThomas @paukjebb1 @sustie @TabethaDarmon @JamesTitcombe
Fantastic to see that #changeiscoming #PansPandasHour We’re so grateful for the support from our MP @MScroghamMP + the few dedicated doctors in @UHMBT helping us manage this debilitating disorder. Thank you @pauljebb1 @aaroncumminsNHS @ChrisOliverNHS.
Are you a caregiver for a young person with PANS or PANDAS? Share your experience of current treatment methods with the Patient and Public Involvement Team @uniofexeter panspandasuk.org/post/nihr-to-u…
Yet there are cases like lack of provision for Pans/Pandas children that are steaming ahead in England but it seems Scot Gov are being allowed to continue to deny research based services to children in Scotland who are still having to travel to private healthcare in England.
A new study reveals #MCAS patients are up to 23x more likely to experience neurologic + psychiatric symptoms, like fatigue, brain fog, migraines, anxiety, & PTSD, compared to healthy controls. Most common symptoms in MCAS: • Fatigue (87%) • Cognitive dysfunction (88%) •…
#PansPandasHour vibes. ⚡ #ChildHealth #ChildRights
I think about the parents who arrive at our clinic exhausted, scared, and doubting their own instincts. They have been told it is just autism or just anxiety, or that they need to “parent” better. That nothing can be done. To wait. Or medicate. But I have seen too much to…
My son has had severe neurological symptoms for years now. He has been diagnosed #PansPandas, but we have also found out through private testing he has functionally low B12, high MMA.
I wish it did blow my mind 😭A story that inspires fear in our community #PansPandasHour Have you seen this one @1goodtern Spot the covid link! open.substack.com/pub/settingfir…
The UKHSA stifled this information in England because it showed the same basic trend, but slightly worse. Well done Italy for your honesty and transparency.
🔥AS ALWAYS, after 60+, in Italy 🇮🇹, kids 0-9 years old are hospitalized for COVID MORE THAN other age groups‼️ ⚠️Kids do get infected ⚠️Kids do spread infections ⚠️Kids do get sick 🔥Pay attention to the 9th of June! 1/
This is incredible.👏🙏 #Pans #Pandas #ResearchMatters #Awareness #GuidelinesChangeLives
Take part in UK guideline development. As part of the PANS Clinical Guideline Development process, we are looking for people directly affected by PANS or PANDAS to participate in a Delphi Process. Find out more about this opportunity here: panspandasuk.org/post/get-invol…
Take part in UK guideline development. As part of the PANS Clinical Guideline Development process, we are looking for people directly affected by PANS or PANDAS to participate in a Delphi Process. Find out more about this opportunity here: panspandasuk.org/post/get-invol…
For the 8th consecutive year, PPN is bringing actionable guidance on acute-onset neuropsychiatric symptoms to the 2025 AAP National Conference! Support this and future efforts at pandasppn.org/donate.
“Australia needs a major prevention campaign for dementia” - of course, no mention of preventing C19 infections to protect brain health, even though there’s now a huge literature on its neurological impacts, including dementia theguardian.com/australia-news…
#WorldBrainDay #AwarenessMatters #ResearchMatters please watch this video and make sure you can recognise the symptoms of #Pans #Pandas
m.youtube.com/watch?v=B1eJMQ…
A survey showed a third of PANS/PANDAS parents are accused of this based on purely the fact the Royal College have not provided guidelines for diagnosing this condition but do on FII so fact is replaced with hearsay of the most damaging kind. SNP know but have done nothing.
We demanded help for our sick children. We were accused of abuse thetimes.com/article/720f66…
#wbd2025 #WorldBrainDay A win for #Awareness is absolutely spot on! As we approach #WBD make sure you are l👀king in all the right places when it comes to our children. #NoMoreLostChildren #Pans #Pandas
#WorldBrainDay An important day to share a #PansPandasHour story. Thank you Lyndsay. #Pans #Pandas linkedin.com/pulse/our-sons…
🧠On #WorldBrainDay, let's make preventive #BrainHealth an EU priority! EBC drives brain health through awareness campaigns and initiatives in the brain space such as global, EU & national advocacy efforts, projects & @BrainDays. Learn more: braincouncil.eu
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