rhiain sofflet

[PANDAS Parent @PANDAS_parent]

It's definitely worth knowing the symptoms of PANS & PANDAS in light of mental health awareness. Whilst MH symptoms are common w/PP, these are not MH conditions. Autoimmune conditions causing brain inflammation will not be fixed if treated as MH conditions https://t.co/QOTcxSgMyl

[Joanne Holloway @CharmingAngelCo]

If you wish to learn more about #pans #pandas to better understand what life is like with these conditions please join this Q&A session on Friday 7th May 12:00 Noon #panspandashour

[Helen Metcalfe 🩵 ⚽️👩‍⚕️ 🚴 ✝️ @BlondiieMama]

@NurseDiane2020 I agree. A lack of research on antibiotic efficacy in PANDAS is NOT the same as "lack of evidence base" which implies the treatment doesn't work, when we know that is not the case. They have focused on known treatment of OCD, tics etc and applied it inappropriately to PANDAS.

[Sonia S. @soniaserrano0]

@NurseDiane2020 Thank you. This statement from @BPNA_org ...I am not surprised that you say it is the most damaging report that you have seen in your 28 years of career. @DrSarahJarvis is there anything you can do to help these parents?

[PANDAS Parent @PANDAS_parent]

@NurseDiane2020 This post made me cry, Diane. Thank goodness there are people like you in the world. There is no way this community will lie down and see our children denied appropriate care and treatment 💪🏻

[Donna Humphries @DonnaHumphrie15]

@NurseDiane2020 Thank you for your support. It’s shocking and worrying that the @BPNA_org have disregarded what many families with first hand, traumatic experience of having lived through children with PANS & PANDAS & the fact that they can be fixed with antibiotics. Penicillin V fixed my child.

[Joanne Holloway @CharmingAngelCo]

@NurseDiane2020 @BPNA_org Seems daily there are stories of MH admissions rising & yet @BPNA_org in this statement are just adding 2 the issue. Also seem 2 have complete disregard of wider health picture. Fallout parents experience from stress they are under is massive + lack of time/capacity 4 self care

[Joanne Holloway @CharmingAngelCo]

@NurseDiane2020 It is certainly damaging on so many levels as is the trauma! Children & families are already traumatized by these illnesses. Then add in the difficult road back 2 health due 2 lack of diagnosis/treatment & support. Now @BPNA_org drop this bombshell! They need 2 be held to account

[Hope @hopestardust20]

Great to see @PackedLunchC4 will be covering #Pans #Pandas tomorrow. So much more needs to be done to help raise awareness of this 🧠 inflammation triggered by a virus inc. Strep, EBV, Lyme & Covid. @MrPeterAndre @DrEmilyOfficia1 @PandasPans hope u can tune in #panspandashour

[Joanne Holloway @CharmingAngelCo]

Those parents who don’t even know Pans Pandas exist, have little hope! GPs rarely raise this as a possible cause for their children’s illness, either through their own lack of awareness of these conditions or through complete denial they exist @rcgp #PansPandasUK #panspandashour

[laura aylott @aylott_laura]

#panspandashour there is an army of support behind @PandasPans and a group of suffering children if you can give them a voice please do it ! This is my son before and after treatment it’s changed his life!

[Mel Payne @melpayne77]

I wonder how many children out there have been wrongly diagnosed? Every medical professional should be #pans #pandas aware #anorexia #eatingdisordertwt #ARFID #panspandashour @PandasPans

[PANDAS Parent @PANDAS_parent]

#panspandashour if every Health Visitor, School Nurse & GP was properly informed about PANS & PANDAS - countless children would be spared a misdiagnosis (often asd, ADHD, behavioural disorders...) and get prompt & proper treatment. Can you help @TheBMA @iHealthVisiting @theRCN?

[steph @swalsh274]

#panspandashour grieving for someone that is still alive is devastating. When that someone is a child, it’s incomprehensible. #stolenchildhoods #panspandas is very real and our children need help 💚

[emma wakeman @EWskeman]

The impact of @PandasPans is debilitating in so many ways ! To watch your child deteriorate before your eyes is cripplingly painful 😞💖 not to mention what it’s doing to them physically and mentally lost friends lost schooling lost mind we really need someone to @bemyvoice 🙏🏼 !!

[Awareness @RuudGrethe]

#PANS #PANDAS
TREATMENT: One size does not fit all
#panspandashour

[G Ibe 🐼 @HunReally]

@NHSuk
And could save many more of professionals would listen!
Let's work together not against each other!

[CaPaGi @CarolePayneGil4]

@xandvt My son was cognitively able and top of the class until he got pans triggered by an engorged tic.. he now can barely attend school or write and is crippled by OCD and tics... please please help our children and feature this rarely diagnosed illness..