09/09/2022
T/W Mental Health and Self Harm 💔
Just popped on here briefly to give an update as to my absence of late. Our family has been thrust into a dark and terrifying world and we are trying our best to navigate through an incredibly emotionally challenging time. In December ‘21 my middle son (then 6 years old) changed drastically overnight. From a sweet, happy, silly kid to an angry, volatile, anxious, self harming and at-times suicidal scared little boy. After months and months of anguish, we discovered that he has a rare condition called PANDAS, which isn’t anywhere near as cute as it sounds, because it stands for Pediatric Acute onset Neuropsychotic Disorder after Strep. His immune system produced antibodies that were supposed to fight the strep infection, but instead have mistakenly attacked his healthy tissue, causing inflammation of his brain, along with causing huge immune dysregulation.
All of his reactions are completely out of his control and it is notoriously difficult to treat. It’s beyond scary and distressing for all of the family and I would go as far as to say that we are suffering from PTSD from the horrors that we have witnessed over the past 9 months. It’s emotionally exhausting in a way that I just can’t possibly put into words. He hasn’t been at full time school for 6 months and I’ve had to give up work (and pretty much everything else) to look after him which is why you haven’t seen any recipes from me in a while.
Speaking out during tough times isn’t something that comes naturally to me, I usually wait for the storm to pass before being able to digest things. But I can finally see a vague hope of light at the end of this long & heartbreaking tunnel. If anyone reading this has a child who suddenly developed severe psychiatric symptoms out of the blue, please feel free to get in touch because the PANS/PANDAS community has really helped me navigate this very cruel and confusing illness. 💔