Top Tweets for #GuidelinesNow
Without rapid publication of UK clinical guidelines, #PansPandasHour parents remain vulnerable to misinformation and an often manipulative "wellness" industry. #guidelinesnow
@claudiahammond @wesstreeting @anne_delaney @alisonacton @LaylaMoran @ChildrensComm @NIHRChildrenHRC
I’ve lost my daughter to PANS PANDAS.
She’s still here fighting. But her energy is spent battling with her brain each day instead of enjoying her childhood
#PansPandasHour
@notestomyboy They still call it controversial because they lack the knowledge & forward thinking. They keep the blinkers on because they didn't learn about it in med school. They lack the knowledge & devastation that WE see when our child changes abruptly. They lack & we lose. #GuidelinesNow
#PansPandasHour is calling and we are very serious about #GuidelinesNow #NoMoreLostChildren @wesstreeting @mikenesbittni @CarrollJennifer @neilcgray @Jeremy_Miles #Pans #Pandas #ChildHealth #CYP #BrainOnFire
#PansPandasHour is still waiting. Our children can't wait, the children on camhs waitlists can't wait, the children misdiagnosed can't wait, children medicated incorrectly can't wait. Nothing like a good wait. No rush 😳 @CarrollJennifer @MichealMartinTD @MaryButlerTD
We are still waiting at #PansPandasHour but we are pretty good at waiting these days, but our children cannot wait. Research won't wait. Medical care evolves & cannot wait. #GuidelinesNow @wesstreeting @CarrollJennifer @mikenesbittni @NatalieDon_ @neilcgray @Jeremy_Miles
#PansPandasHour is growing strong.
A parent knows their own child better than anyone. Our children deserve appropriate medical care, not a misdiagnosis. Camhs are not Immunologists, nor do they treat infections. @FineGael @fiannafailparty @MichealMartinTD @FergalBowers
#PansPandasHour is still waiting. But our children cannot wait. The children of tomorrow cannot wait either. #GuidelinesNow @CarrollJennifer @MichealMartinTD @NormaFoleyTD1 @MaryButlerTD
We are still waiting but we aren't giving up. #PansPandasHour is only grower larger & stronger.💪
There needs to be more awareness of post-infectious post-viral inflammatory conditions in children. #ATeam #Pans #Pandas #ChildHealth @wesstreeting @CarrollJennifer @mikenesbittni
#FirstClass #Homework this evening. #AnDochtúir 🏥 But is the doctor #PansPandasHour aware? Let's hope it is #TimeForChange #GuidelinesNow
#PansPandasHour is still here and we are still advocating as every child deserves to be heard and have a future with access to appropriate medical care. #GuidelinesNow @fergalkeane47 @MiriamOCal @JoeyCan88 @katesilverton @DanWuori @SophieEB @NickyByrne @FergalBowers @ZaraKing
Imagine if we had #GuidelinesNow for #PansPandasHour what this would mean for the extended family? It is not only the child that suffers due to #NoClearGuidelines to treat #Pans #Pandas but siblings, cousins, friends, grandparents.
Parents of children with PANS exhibit "elevated symptoms of depression, anxiety, trauma, and caregiver burden," according to findings from a small study.
Study: https://t.co/84yp09GYGU
#PansPandasHour is all about awareness. Parents continue to raise any awareness they can, so is it really too much 4 medics to consider #Pans #Pandas when a child changes abruptly & severely? #GuidelinesNow
@wesstreeting @CarrollJennifer @mikenesbittni @neilcgray @Jeremy_Miles
#PansPandasHour
✅Real
✅Not rare, but rarely diagnosed
✅Often misdiagnosed as other conditions
✅Medicated inappropriately due to misdx
✅Devastating on child & whole family
✅Awareness & prompt treatment is crucial
✅#NoMoreLostChildren
✅#GuidelinesNow #ChildRights #CYP
@cvcroninvejar For sure…
PANS=Pediatric Acute-onset Neuropsychiatric Syndrome
PANDAS=Pediatric Autoimmune Neuropsychiatric Disorder Associated w Strep
Autoimmune disorders leading to basal ganglia encephalitis & thought triggered by infection
https://t.co/X5D41RNwKJ
Children suffering from PANS/PANDAS deserve to be accurately diagnosed and treated. Your support provides clinicians with trusted resources to aid in the recovery of their patients. https://t.co/6EWjtxkz2W
@The_HappyDaddy @PANSPANDASUK Our #NHS paediatrician is a hero. However, he actively supports our decision to seek support from a private neurologist. Without #guidelinesnow the #NHS @EveryDoctorUK 's support will remain limited. We need #GuidelinesNow @wesstreeting @PhilipSimeITV @1goodtern #PansPandasHour
#PansPandasHour Parents won't stop advocating for our children. It is our job. Now we need the medics to do their jobs. No More pass the parcel with children's lives. #GuidelinesNow
@CMOIreland @chiefnurseIRE @CNO_NI @HSELive @NHSuk @OCO_ireland @nichildcom @ChildrensComm
Ignoring #PansPandasHour does mean it goes away, it is still here, very real, not rare but rarely diagnosed. It doesn't have to be this way. #GuidelinesNow #CYP #NoMoreLostChildren @PresidentIRL @MaryRobinsonCtr @fergalkeane47 @Earlychildhood @dcediy @FergalBowers @JigsawYMH
#PansPandasHour seems to be knocking louder and harder on our children's doors the last few years. Resistant #Mycoplasma, repeated #Covid , aggressive #strepA we need more awareness #GuidelinesNow
#Pans #Pandas #NoMoreLostChildren
#PansPandasHour #StillWaiting If a child changes abruptly with pp symptoms after an illness & their symptoms cannot be better explained by a medical condition, #Pans #Pandas should be considered. #GuidelinesNow @CarrollJennifer @wesstreeting @mikenesbittni @NormaFoleyTD1
#PansPandasHour is still waiting and our children are still running the gauntlet of a misdiagnosis. Sending to #camhs is not the answer for immune mediated conditions. #Pans #Pandas @CarrollJennifer @MaryButlerTD @NormaFoleyTD1 @HMcEntee
#PansPandasHour request that our children have the right to medical care. Simply sending to #camhs without fully investigating the root cause of why a child has changed so abruptly is simply unforgivable. The research is there and parents are speaking up. #GuidelinesNow @UNICEF
Tried to make the point on @LBC this morning that Doctors will often psychologise post viral illness, like #LongCovid #LongCovidKids
This could well explain at least some of the increase we are now seeing in prescribing antidepressants.
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