Notes to my boy ✉️ (@notestomyboy) 's Twitter Profile
Notes to my boy ✉️

@notestomyboy

Hi, please see pinned tweet. My beautiful boy fell ill with #PANS #PANDAS when he was 9. I love you Son more than anyone can know and I am proud of you ❤️

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calendar_today16-10-2020 23:53:35

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Notes to my boy ✉️ (@notestomyboy) 's Twitter Profile Photo

Yes, he has read the letter and seems ok with it ! He’s put it by his bed and told his Sister it’s a letter for him about his condition. Also said to her that all he wants is to be able to go back to school and see his friends. Heart is bursting with hope ❤️❤️

Notes to my boy ✉️ (@notestomyboy) 's Twitter Profile Photo

My Sons life has been on hold for 4+years as it took so long to diagnose his PANS PANDAS. He’s still cant speak to people or leave his Moms house. I haven’t seen him for yrs. This is why I’m so focussed on spreading awareness, early diagnosis works. More student Nurse feedback 👇

My Sons life has been on hold for 4+years as it took so long to diagnose his PANS PANDAS. He’s still cant speak to people or leave his Moms house. I haven’t seen him for yrs. This is why I’m so focussed on spreading awareness, early diagnosis works. More student Nurse feedback 👇
Richard Lewis (@rlewistherapy) 's Twitter Profile Photo

I can’t believe we’re still arguing in the 21st century about whether we should listen compassionately to people in profound distress talk about what’s happened in their lives, or blindly match symptom clusters to a drug with no known mechanism of action and ignore their stories.

Notes to my boy ✉️ (@notestomyboy) 's Twitter Profile Photo

Imagine not seeing your own child’s face or hearing his voice for years 💔 the reality of PANS PANDAS is so cruel it’s hard to convey. I know he doesn’t look like this any more and yet I don’t know what he does look like. I love you mate and sending ❤️to the families who know.

Imagine not seeing your own child’s face or hearing his voice for years 💔 the reality of PANS PANDAS is so cruel it’s hard to convey. I know he doesn’t look like this any more and yet I don’t know what he does look like. I love you mate and sending ❤️to the families who know.
Notes to my boy ✉️ (@notestomyboy) 's Twitter Profile Photo

If you’re a Teacher please consider this training session on how to help children with PANS PANDAS. You could make a real positive difference to a young person who is suffering badly.

Rebecca W1986 (@w1986rebecca) 's Twitter Profile Photo

#Edutwitter #SEND was so refreshing today to promote this wonderful training from PANS PANDAS UK and find a huge amount of SEND specialist staff had recently attended and highly recommended. Anyone interested in #neurodiversity #mentalhealth #anxiety this is a must for Sept.

Notes to my boy ✉️ (@notestomyboy) 's Twitter Profile Photo

Making memories with my Daughter in beautiful sunny North Wales. We’re just missing a very special Son and Brother. We miss you mate and wish you were here with us. I’m sure you will be one day and we hope it’s not too soon 💔❤️

Making memories with my Daughter in beautiful sunny North Wales. We’re just missing a very special Son and Brother. We miss you mate and wish you were here with us. I’m sure you will be one day and we hope it’s not too soon 💔❤️
Notes to my boy ✉️ (@notestomyboy) 's Twitter Profile Photo

Sending ❤️ to all the kids and families who have no back to school photo today, for whatever reason. My Boys last one was 2019. No school now for 4.5 years due to #PANS #PANDAS 💔 Love you mate ❤️

Sending ❤️ to all the kids and families who have no back to school photo today, for whatever reason. My Boys last one was 2019. No school now for 4.5 years due to #PANS #PANDAS 💔 Love you mate ❤️
PANS PANDAS UK (@panspandasuk) 's Twitter Profile Photo

Great to see amazing Lucinda Miller raising awareness of PANS and PANDAS on fearne cotton Happy Place Podcast. Huge thanks to you both. For more information about these conditions, please visit our website at panspandasuk.org youtu.be/NcWWT-lGWNM/ #PANSPANDASUK

Notes to my boy ✉️ (@notestomyboy) 's Twitter Profile Photo

Sometimes what keeps me awake at night is the knowledge that a PP aware Dr could have stopped my Sons illness before he lost half his childhood. This is why I will always spread awareness of this awful condition. Some more Childrens nursing degree student feedback. Small steps❤️

Sometimes what keeps me awake at night is the knowledge that a PP aware Dr could have stopped my Sons illness before he lost half his childhood. This is why I will always spread awareness of this awful condition. Some more Childrens nursing degree student feedback. Small steps❤️
Tim Clarke (@tjclarke_) 's Twitter Profile Photo

Echoes of our own story and the life-changing impact on our daughter. With swift diagnosis and treatment, she could and should have made a complete recovery. The NHS has failed so many children through a lack awareness, training and resource.

PANDA Mama (@pandamama2024) 's Twitter Profile Photo

#PansPandasHour PP parents are amazing, awareness is everything. If you are a #nurse #teacher #sports #coach #volunteer #aunt #uncle #cousin #grandparent please read and remember 👇👇👇👇

PANDA Mama (@pandamama2024) 's Twitter Profile Photo

#Teacher #EduTwitter #múinteoir #scoil #school #education #Reception #P1 #JuniorInfants #EarlyYears #ChildAndFamily #ECCE #BackToSchool #PansPandasHour #Awareness

Notes to my boy ✉️ (@notestomyboy) 's Twitter Profile Photo

Hello all, I’ve not seen this face for 4.5 years and I just want to say that I miss it so much it hurts. That’s it, hope you are all doing ok ❤️, I love you Son ❤️❤️

Hello all, I’ve not seen this face for 4.5 years and I just want to say that I miss it so much it hurts. That’s it, hope you are all doing ok ❤️, I love you Son ❤️❤️
PANS PANDAS UK (@panspandasuk) 's Twitter Profile Photo

Join Us for our Annual General Meeting (AGM) 2024 🗓️ Date: Saturday, September 14 🕒 Time: 14:00 - 15:30 📍 Location: tiny.cc/68rjzz Have any questions? Feel free to get in touch at [email protected]. #AnnualGeneralMeeting2024 #MeetTheTeam #Event #PANSPANDASUK