@notestomyboy It is unbearably hard and no one gets it unless they have been there. I clung to the stories and never thought we’d see any recovery.
Your posts break my heart as I know how it feels and all I can offer is an ear if you need one. Sending love and strength x
#panspandashour the horror of PP means I’ve barely seen or spoken to my Son now for 5 years when he was 9. He lives with his Mom and won’t leave the house or be seen. My only way to communicate is letters, cards & photos. He never replies. Here is today’s card. Please retweet to spread awareness. I love you mate ❤️
@RigidSweets@FredXylonix 12 yrs it took to get my girl well. She was on adult strength psychotropics & all CAMHS could offer was to up and up them. She self harmed on Sertraline but apparently that side effect was ‘negated’ by the ‘benefits’ it was finally good old fashioned antibiotics that saved her!
@BrainInflCollab Thank you. Yes she is so there is always hope. It took 8 ye too get a diagnosis and a few blips after but she’s a healthy weight today. Sadly some PANS symptoms I think will always be there but no where near as badly as at the peak … timely treatment & awareness are everything x
There will be no fun, walks, sport, clubs, family time, time with friends or Sunday dinner for this beautiful boy today. It’s been the same for about 1,800 days now due to PANS PANDAS. Today he will be remain largely isolated, unwashed and undressed at his Moms house. We are making progress with awareness largely due to the tenacity of @PANSPANDASUK but there’s so much more to do. If you work with Children in any capacity please make yourself aware or reach out so I can explain more. Love you mate ❤️
@celticsting@jomickane I’m 50. Went on a student exchange at 17 to Paris. We had to go through a metal detector to get into the college over there … why are we so far behind …. 🤔
I am appalled by the recent AAP report onPANS. While it is a step forward that AAP is recognizing PANDAS/PANS, they have left out CRITICAL RESEARCH MILESTONES from many labs including mine who have advanced our understanding of the disease. Shame on them! https://t.co/U0CkMczUdU
@thiscryptolyfe@cranky_and This has really upset me. Your poor daughter. What an horrific think to happen. I had surgery yesterday most staff were fabulous, one or two indifferent.
I wanted the fun corner of recovery, I got sullen and no bedside manner! I hope that your daughter is healing inside and out x
@cranky_and That is disgraceful. I had. Surgery yesterday and there were clearly defined areas for men and women and a separate children’s area too. I had breast surgery and I certainly didn’t want to discuss it with all and sundry to hear!
I hope your daughters recovery goes well xx
@SomeAreDead@uniofwarwick Dropped my son off on Thursday … we only live 5 roads away but he had his heart set on living and studying at such a fabulous and highly ranked University!
I wish I was joining him 😂 the buzz on campus is fabulous.
@frankbrunoboxer Enjoy Frank. I can’t wait 🥊
It was watching you as a kid that gave me a love of boxing … probably because nearly every one was a knockout! x