Notes to my boy ✉️
@notestomyboy
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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 ❤️
England, United Kingdom
Joined October 2020
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Pinned Tweet
“THE BOY WHO STOPPED”❤️ This is a summary of my Son’s story.
#PANS
#PANDAS
#ChildrensMentalHealthWeek
Thank you for reading ❤️
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He just spent his 14th birthday entirely alone. Same as his 10th, 11th, 12th & 13th. Imagine that. Didn’t open a gift or card, didn’t see a friend or have a party. I find his birthday harder to cope with than any other day of the year. One day he’s getting the biggest hug ❤️💔❤️
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It’s approx night 1,400 without giving my beautiful boy a kiss goodnight. Imagine that. Hardest thing I can imagine. Here’s when life was good , miss you and love you mate ❤️❤️❤️
#panspandas
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I love you Son ❤️ I miss everything about you. It feels like grief even though I have hope. 4 years and counting……..
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After Scarlet Fever, Tonsillitis and Hand Foot and Mouth, he changed overnight. PANS/PANDAS took him from this to this. He tried to jump out of my moving car screaming “let me die”. He’s been like this for nearly 4 years. Doesn’t wash, dress or leave the house. Love you mate❤️
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We haven’t seen this handsome face for years, but have seen some recent small signs of improvement. If a child you know changes suddenly/brutally overnight think PANS/PANDAS. Early intervention with simple antibiotics could solve this. Wake up World ! I love you Son ❤️❤️
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I miss you mate , I won’t stop fighting to get you well again. You’re the bravest and strongest person I know ❤️💔❤️
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Today has been a good day. A small step forward in the possibility of this beautiful boy’s story being heard. Thank you to all who are listening, it means a lot. I love you mate ❤️
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3 years ago today at the GP begging for help. He hasn’t left the house since apart from a hospital admission. Still only wears this blanket. No clothes and not washed since. How long will he have to suffer like this …..
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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.
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Imagine your perfectly healthy child changes overnight. Stops eating, sleeping and drinking and begs to be allowed to die. This isn’t a
#hollywood
horror this is PANS PANDAS. Wake up World. Love you and miss you mate ❤️
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@iam_emilyanne
Thank you. He lives with his Mum, but won’t let anyone see him. Sleeps in the day and awake at night. He knew it was his Birthday but chose the stay in his room all day, unseen completely.
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Merry different Christmas to those that know. My Son’s presents, unwrapped and almost certainly not to be looked at. My 4th year without seeing him and without him being able to open or look at presents. Thousands of families get it and my love to you all this Christmas ❤️
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I’m on holiday in Kos, it’s amazing.With my Wife, Daughter and 2 step daughters. My boy is home with his Mom. PP means he hasn’t left home now for 4 yrs. I miss him so much. Every blond boy at the pool & those shouting Dad catches my attention. This was his last hol in 2019 💔
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About to write my Son a letter and card as it’s his Birthday soon. He was 9 when he fell ill and will be 14 soon. I’ve been putting it off for days.This time I’m going to write the letter at the start of a big notebook, I’m hoping he may write a brief note back to me 🙏❤️
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#panspandashour
I couldn’t have wished for a happier more vibrant Son until PANS PANDAS stole him from me 4 years ago. He’s not dressed, washed or left the house for years. I’ve not seen his face for years and no longer know what he looks like. I love you mate ❤️❤️
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2017, look how beautiful he is ❤️ I love you mate and I have the biggest ever hug waiting when you are ready for it ❤️ imagine not seeing your Sons face for 4.5 years
#panspandas
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Yesterday my Son was comfortable enough to let his Mom leave the house for a couple of hours to watch our Daughter sing in a concert. I desperately wanted to just spend that time with him in his Moms house, but he wasn’t ok to do that. It hurts but it’s still progress. ❤️
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Been to dinner with my wife and got back to see 1k Americans think my Son is dead. He isn’t dead. He has PANS PANDAS. This means he changed overnight 4 years ago, he stopped all normal life and hid himself away because of fear. He’s the bravest person I know but I miss him so
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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 ❤️❤️
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Very lucky today to be asked to contribute by
@PandasPans
as a parent of a child with PANS PANDAS as we try to put in place UK clinical guidelines for our children. I 🙏 that change is coming. I love you Son ❤️
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I’m lucky, I know they both love me even though only 1 can tell me so at the moment. He told his Mom he had a dream about me which has made me smile ❤️ and hopefully a small sign of progress. Happy Fathers Day to all the amazing Dads out there.
#panspandas
. Love you mate ❤️
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I’ve just had this lovely message thru on DM. Such a positive (and similar) story. Gives me lots of hope that we can get our beautiful boy back 🙏 a big thank you to the person who has sent it. ❤️
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My 9 yo Son was “mentally ill” until an underlying physical source of inflammation was considered. Given this could be a simpler solution to the impossible CAMHS route, does this not deserve a mention
@thetimes
@DrElaineLockha1
?
#pans
#pandas
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Imagine not seeing your own child’s face for 3 years due to the severe anxiety and OCD caused by PANS PANDAS. Love you mate and won’t stop fighting to get you better ❤️
#panspandashour
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Blackpool pleasure beach was one of our favourite places. I’ve not been back since you’ve been ill , but one day maybe …. I love you mate ❤️
#pans
#pandas
#panspandas
#MedTwitter
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#panspandashour
the last normal photo of my boy taken 4 years ago before PANS PANDAS took over his brain and then a few months later at the GP seeking help. That blanket is all he’s worn now for 4 years. Love you Son ❤️
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My Sons story published by
@thetimes
today. Thx to
@louise_eccles
and
@PandasPans
for making this happen. Awareness & early intervention are critical, PLS SHARE❤️
‘Let me die’: the mysterious syndrome changing children overnight
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We’re back in North Wales for a family holiday, me and my Daughter on Llandudno pier today. On the right is my boy, my daughter and 2 step daughters, in Conwy, our perfect family, before the World changed. We all miss you mate, always, maybe one day ….. 💔❤️💔xxx
#panspandas
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He’s been MASKING autism since birth we were told. As vulnerable parents of a Son who had changed overnight. This to justify pumping him full of anti psychotics at age 9. I’m definitely not an expert on severe autism but what do you think ? Love you Son ❤️
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#panspandas
means I’ve not spoken to my boy now for years. I’m constantly thinking of ways to communicate with him. This is a beautifully written book about, amongst other things, dealing with thoughts and emotions. Left it at his Moms for him.I hope he reads it, love you mate ❤️
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#panspandashour
this nice weather has me missing you more than ever. We should be out having fun and building memories together. One day I hope we will again and not too long. I love you mate ❤️❤️
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#panspandashour
we’re close to the 5th consecutive birthday without seeing my Son. He changed overnight aged 9 following Scarlett Fever. He has severe OCD, can’t leave his Mums house and won’t let anyone see him. I miss him so much especially around his Birthday 💔💔
About to write my Son a letter and card as it’s his Birthday soon. He was 9 when he fell ill and will be 14 soon. I’ve been putting it off for days.This time I’m going to write the letter at the start of a big notebook, I’m hoping he may write a brief note back to me 🙏❤️
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Thank you all so much for your support and engagement over last 24 hours. I have read every message. I know my messages and photos are bleak BUT the absolute most important thing about PANS/PANDAS is awareness. Spotted and treated early, it doesn’t have to be like this. ❤️
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Peaceful Friday evening beach walk. Thinking about my boy and the fun we would have exploring. He’s not left his Moms house for 4.5 years due to PANS PANDAS and yet we still have no clinical guidelines in the UK. I wonder if he can see the sunset from his home. I miss him ❤️💔❤️
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The change from age 8 to age 10 is down to PANS/PANDAS. He’s calmer now but been like this now for nearly 4 years. If children change suddenly then early diagnosis and treatment can stop years of suffering. Love you mate ❤️
@PandasPans
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#panspandashour
with my beauties in Llandudno a year before my Son lost all semblance of normal life due to PANS PANDAS. I’ve not seen this face and his Sister has all but lost her big bro for 4 years now 💔
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#panspandashour
Did you feel the warmth of the Sun today ? Smell the grass, speak to a friend , leave the house, enjoy a hot bath ? I bet it felt good didn’t it. Thanks to PANS PANDAS, this handsome boy hasn’t done any of these things now for 1,560 days. Can you imagine ? 💔
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Out last night for a celebration meal for eldest step-daughters exam success.We had a great night but missed you mate💔 we all decided you would have had rib eye steak and maybe a sip of my red wine 😉. We love you and can’t wait until you’re well enough to join us❤️
#panspandas
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#panspandashour
do u work with kids?If so, you need to know about PANS PANDAS, in case you see a child change drastically overnight. Please do the research and look at
@PANSPANDASUK
- here’s my Son after his onset. I’ve not seen him now for 4 years as he can’t be around people💔
He just spent his 14th birthday entirely alone. Same as his 10th, 11th, 12th & 13th. Imagine that. Didn’t open a gift or card, didn’t see a friend or have a party. I find his birthday harder to cope with than any other day of the year. One day he’s getting the biggest hug ❤️💔❤️
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#PansPandasHour
a few months between these photos due to the absolute devastation caused by PANS PANDAS aged 9. Still like this 4 years on ! When will the World wake up to this ? 💔
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Watching the World Cup on TV with my boy in 2018. Wonder if we will ever do that again ? Love you mate ❤️
#panspandas
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Happy new year to all the PANS/PANDAS families world wide and especially our suffering children. PP changes kids from this to this. May 2024 bring better understanding and awareness.
#wakeupworld
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Another day another lovely DM. Thank you to the open minded and positive Neuroscientist who sent me this lovely message. We always have hope ❤️
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Happy Easter my beautiful blue eyed boy. I love you and ready for the biggest hug of my life when you are better. Love ya mate ❤️❤️ love to all the PANS PANDAS kids and families , you are all inspiring ❤️❤️
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Just had a banner notification from Apple News about our own story ! Also ran in The Sun today and currently top of the Apple News site in UK.
#pans
#pandas
#MedTwitter
@PandasPans
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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 💔❤️
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#panspandashour
this poignant poem is on the wall at moms care home. Some of the lines resonate with our PP kids “I haven’t always been this way” and “think of the life I may have once led” hit hard 💔 sending love to my Boy and others suffering ❤️
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Last night my boy ate his cold Christmas dinner alone at midnight. This is life for a 12 year old with PANS PANDAS. I feel heartbroken for him but he won’t allow any contact or communication with anyone. 💔
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My Son, my most precious thing in the World has been taken from me for 4 years. The joy, happiness and love I will feel when he comes back will be the best feeling I’ve experienced in 51 years. I’m ready for it ❤️
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If you’re watching the football with your Son, you are winning in life , enjoy ❤️
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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 👇
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Based on the story I share on here I was asked to provide some content on PANS PANDAS and my Sons story for students doing a Nursing degree. I am so grateful to be given this opportunity and now have started to get some student feedback and it’s emotional ! Make a difference ❤️
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Been out in this fab City tonight with ex colleagues who knew my boy before he got ill. All are shocked but amazingly supportive and kind and left me ready to sleep soon but with this lovely face on my mind. I love you mate ❤️
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#panspandashour
over 1,000 days since I have seen his face due to the severe trauma and distress PANS PANDAS has caused. Our children are suffering needlessly and need more help now. Love to my Boy and all those suffering ❤️
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@obsessivelyocd
I love reading your story and find you inspiring. Keep on being the strongest most amazing fighter there is ❤️
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Weve been very close to him being sectioned this last day or so. Thankfully the Trust has authorised Amoxicillin which he’s started to take. He seems to have started eating & drinking which is a huge relief. We are back to a total blank on diagnosis because nobody will call it PP
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#panspandashour
me and my Daughter, another lovely family holiday just completed, this time in Kos. Another that you’ve missed and will have no stories to tell from. How much longer will you be trapped like this ? I love and miss you mate ❤️💔
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#PansPandasAwarenessDay
Just months after the photo on the left he tried to jump out of my car on a dual carriageway screaming “let me die”.
He’s not lived a shred of a normal life in the subsequent 4.5 years. Just in case anyone is wondering why today is so important. ❤️
#PansPandasHour
a few months between these photos due to the absolute devastation caused by PANS PANDAS aged 9. Still like this 4 years on ! When will the World wake up to this ? 💔
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We’re at one of our favourite places but without one of our favourite people 💔 lots of happy family holiday memories here. One day eh ….. love you mate ❤️❤️
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3 years now. No kiss, no cuddle, no words, no I love you’s, no fun, no adventures, no holidays. More pain than I ever knew possible. He remains utterly trapped by this illness and the worst part is fighting the system.
#panspandashour
I love you my brave beautiful boy ❤️
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Tonight I aim to spend an hour in the house with my Son (he lives with his mom). I won’t see him, not even on same floor, but he will know I’m there and says it’s ok. His crippling OCD and other Pans Pandas symptoms mean I haven’t seen him or spoken to him for 2 years + 👨👦🤞❤️
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Nervous and excited to talk about
@PandasPans
today at the Gemini Wealth Management charity golf day
@GeminiWealth
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Sometimes these “on this day” memories take my breath away. It’s been over 1,000 days since I have seen his face and amazing smile. Love you Son ❤️
#pans
#pandas
#panspandas
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This will shock you. Before & after
PANS/PANDAS. Love you mate ❤️
#wakeupworld
@PandasPans
@NurseDiane2020
@Hopesaxons
@PANDASPPN
@OregonPans
@pandasinstitute
@dollyjoyner
@drclairetaylor
@DrAmirKhanGP
@TinaCoope
@GellerOCD
@joanneG007
@kirstymontgome4
@joanneG007
@obsessivelyocd
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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❤️
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My 4th Father’s Day with no contact from my boy. His OCD prevents him from leaving his Mums house or seeing or listening to anyone. I write him letters which he seems to read. I love you Son and hope to see you soon. Sending love to all others struggling today 💔
#panspandas
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Very proud to be supporting
@PandasPans
today at the
@RCPCHtweets
conference at ICC Birmingham. Here to spread awareness and support our young children and their families ❤️
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#panspandashour
I’m late to this book but every page from
@charliemackesy
is beautiful, thought provoking and contains an important message. Have left a copy at his Moms house. I hope he reads it, love you mate and love to all PP families struggling, I see you ❤️
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Tonight we’ve had a lovely family meal and a beautiful Autumnal fire. The kind of evening my boy would have loved and enjoyed being the centre of attention. This flame is for you mate, we miss you always and we cannot wait until you re-emerge from this awful illness ❤️💔
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#panspandas
means our family has been in limbo for 3 years. My beautiful boy is alive but I have not seen him or been able to speak to him for 2 years. He lives in total isolation. If you haven’t been through it you can’t imagine how painful this is for all. I love you Son ❤️
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The Times is free to read this weekend. Here, Louise has kindly written about my Son “Oliver” and his story. Please read and retweet because “let me die” can become “let me live” with the right level of awareness and intervention ❤️
I wrote about young children developing extreme OCD almost overnight - and how it could be triggered by infections such as bacterial tonsilitis.
@PANSPANDASUK
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This is so important , thank you for such a valuable article and having it on the front page. Our journey thru the health system has involved dealing with dozens of Drs or Nurses. 99% had never heard of PANS PANDAS or worse, told me it didn’t exist. I hope they read this ❤️
The July issue of Nursing Children and Young People is out now.
It features the little known autoimmune disorders PANS and PANDAS, plus food allergy, nursing roles in cardiac surgery, precocious puberty and the latest on whooping cough.
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#panspandashour
my amazing friend
@MarkRickards5
told his kids about my Sons story and
@PANSPANDASUK
. His 8 yo wanted to help, so he started making these band bracelets. He’s now sold them to everyone at work for PPUK donations. What a boy, thank you G ❤️
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Look how handsome his is. A couple of years before PANS/PANDAS took hold. On stage at
@CadburyWorld
in Birmingham. So proud of him but not seen his face for 3 years as he can no longer be in same room as others and can’t be looked at or directly spoken to.
#wakeupworld
❤️❤️
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Imagine your perfectly healthy child changes overnight. Stops eating, sleeping and drinking and begs to be allowed to die. This isn’t a
#hollywood
horror this is PANS PANDAS. Wake up World. Love you and miss you mate ❤️
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We are in hospital. Planned admission after over 2 years of severe illness from PANS/PANDAS. Not sure what the plan is yet but can only help. 🤞❤️
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I love you Son. My heart breaks that i can’t see you but I will never stop trying and hoping , my beautiful boy ❤️❤️❤️
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If the point of my messages could be summed up in one reply, this is it ❤️ thank you for your open mind ❤️
@notestomyboy
Hi! I’m a psychologist, followed you for a few months now. Shocking to say as a forensic psych currently working in to adult mental health I had never heard of this condition until your post popped up. We seem to have a great understanding of the effect of infection….
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Been thinking tonight about some simple words and they are this. HALF MY HEAD. Whatever I’m doing, half my head is with my boy who is suffering so much from PANS/PANDAS. I love you Isaac ❤️. Please support
@PandasPans
if you can 👍
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9
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Done. Now breathe ! Probably the most emotional speech I’ve ever done but it went well. Got a standing ovation and informed 80+ people about PANS PANDAS and my Sons story. Raised awareness and much needed funds for
@PandasPans
, amount to be confirmed ❤️👌
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Wrote another letter tonight to my Son. He lives with his Mum and won’t talk to anyone else so it’s my only way to “talk” to him. Was just an update on what we’re all upto, family, work, holidays etc. Printed him some photos too as he’s not seen us all for 3.5 years. (1/2)
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8,000children who may be suffering like this is impossible to imagine. With most professionals working with kids still not aware. It’s time to wake up UK. Thanks to
@PandasPans
for all you do ❤️
#PANSPANDASUK
estimates that there could be approx 8000 children with
#PANS
&
#PANDAS
in the UK. Book your place now on our free
#CPDTraining
for
#teachers
&
#SEND
professionals to help
#support
these children.
Register here:
#EducationMatters
#Awareness
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@ChrisPalmerMD
@RuudGrethe
It’s happening in children, it’s called PANS PANDAS. Needs much wider understanding and awareness. My Son went from well and fine to trying to jump out of a moving car screaming let me die, this change was overnight and at age 9. 💔
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#PansPandasHour
a few months between these photos due to the absolute devastation caused by PANS PANDAS aged 9. Still like this 4 years on ! When will the World wake up to this ? 💔
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Just one of our many adventures , dad and lad days out. I miss you Son and I won’t keep fighting for you to get better. Sending love to everyone struggling with PANS PANDAS or any related conditions , hope prevails ❤️
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If you work with children you need to know about the devastating, sudden condition
@PANSPANDASUK
that can strike overnight. Early recognition = effective treatment, without it can be a life sentence. I can help with my Sons story. More feedback from Childrens Nursing students ❤️
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This is just one page but it means so much. This is change. This is hope. My boys story played a small part in changing the story and how these kids are treated. Love to my boy and to all still suffering - let’s end the suffering ❤️💔❤️
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#panspandashour
As a direct result of the amazing work that
@PandasPans
are doing and the change in policy from
@BPNA_org
, we have an appointment soon to carry out diagnostic tests on my Son. After 3.5 years of awful illness and 2 previous admissions. Now being offered (1/2)
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Wouldn’t it be great to get
#merrydifferentchristmas
trending for anyone who is having a non traditional Christmas however that has come about
#pans
#pandas
#illness
#ocd
#loss
#bereavement
#lonely
#single
#trauma
#longcovid
#autoimmune
#me
#encephalitis
#chronic
❤️love to all ❤️
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The reality of a severely distressed PP child seeking medical help 20 months after falling ill. Every waking minute is dominated by extreme anxiety, phobia, distress and OCD. Before illness he was a very happy child in every aspect of life.
#panspandashour
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It’s cowardly I know but working week is easier as I’m busy. Weekends mean more time to miss my boy and feel broken by his lost 3+ years. I simply miss him and I love him. New day tomorrow and hope prevails 😘 love you Son ❤️❤️
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much it hurts. To help me cope with my “loss”, I share my feelings here. I also hope sees these messages 1 day. I don’t want false sympathy or to cause unnecessary distress. However, I do want to spread awareness of PP and to tell the best boy in the World that I love him ❤️❤️
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@CherylKeagy
Thank you. 2 minutes away but he will hide away when I go to pick up my daughter and forced contact from anyone which he doesn’t want will likely cause a panic attack.
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#panspandashour
my Son is home, lost weight and much more distressed than when he went into hospital. No discharge letter and PP diagnosis seemingly removed. Thankfully making tiny daily improvements on Amoxicillin. Thanks for all the well wishes, they have all helped ❤️
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