Something that I think is important for people to know about PANDAS and PANS is the devastating impact it can have on someone's life, how the most optimistic, happy, joyous individual could suddenly become extremely depressed and hate themselves overnight, how the sweetest child could suddenly turn and become almost like a stranger, struggling with oppositional defiance, personality changes and involuntary rage attacks. How someone who is usually open minded and quick witted can no longer comprehend anything due to their thought process becoming incoherent and having severe brain fog and cognitive decline and having extremely black and white, rigid thinking where there is no middle ground. How someone who is usually confident and carefree can be crippled with anxiety and bouts of intense fear for seemingly no reason and feel as if they are burning up and in constant fight or flight as if they were about to be crushed by the weight of this affliction. Some people have food restrictions leading to anorexia and they may become malnourished, dehydrated and lose a lot of weight, and in some cases this weight loss could be life threatening if not managed. It's a condition that can cause people to be consumed by debilitating OCD rituals that are time- consuming, distressing, elaborate and complex, a condition that can cause a cascade of terrifying, emotionally charged intrusive thoughts every few seconds and a condition that causes you to hear voices in your head that hurl the most hurtful remarks at you and having insomnia so severe that you are lucky to sleep at all and are left unable to function the next day. This is something that cannot be remedied by 'trying harder' or 'discipline' or 'self control', this is a brain on fire, the basal ganglia becoming a war ground. This is PANDAS / PANS- conditions that can steal away every remainder of someone's happiness and leave them as a shell of who they once were, almost overnight. A condition that people still argue over, whilst in the meantime, people are suffering. People are having their lives torn apart and barely surviving whilst in extreme distress from these neuropsychiatric symptoms and parents dealing with PTSD because seeing their child experiencing such turmoil and anguish and constantly fighting to get them the support they need and not being listened to is heart wrenching, frustrating and utterly traumatic. Something needs to be done, and now, we cannot wait for any more lives to be ruined. Thankfully I am one of the lucky ones, one of the people who was able to get antibiotics after a few months and have my symptoms reduced by 80-90 %, every single paediatrician , psychiatrist, psychologist and neurologist should know about PANDAS and PANS, so that people can get the treatment they need as soon as possible and prevent a lifetime of suffering, these isn't just a story to disregard, this is life for people with PANDAS and PANS before diagnosis or effective treatment, this is hell for these people. This should not be seen as controversial, people's lives are at stake, it is no coincidence that people go into remission once the infection is treated and inflammation is reduced, and the psychiatric and neurological symptoms can diminish with the accurate diagnosis and treatment, but this can take years when it shouldn't, and children are having chunks of their childhood stolen away and lost due to this ignorance, and even their entire lives if the accurate diagnosis isn't given. There have been kids and adults with this who say that they want to die, and if anything at all can relieve these peoples pain and suffering, then why isn't it done?
PANDAS / PANS is debilitating. Laughter is replaced with tears. Joy is replaced with fear. Fun is replaced with time consuming rituals. This is a condition that changes people overnight and leaves them as a shell of who they once were, dealing with horrific neurological and psychiatric symptoms that can make every day a waking nightmare. It leaves people with terrifying intrusive thoughts, intense panic, fear & anxiety, complex painful tics, rituals that take hours out of the day, deep depression, violent rages, food restriction sometimes to the point of anorexia, psychosis, loss of fine and gross motor coordination, intense mood swings, meltdowns, loss of daily skills, personality changes, oppositional defiance, brain fog and so much more turmoil. This is hell - This is PANDAS / PANS. This is real, people need help, awareness makes it more likely for people to get an accurate diagnosis and treatment, early intervention is vital. It saves lives.
Sometimes with PANDAS / PANS, the smallest step in the right direction or the slightest improvement is a victory. Doing things that most people take for granted is a massive step. Being able to sleep in our own bed, dress ourselves, wear socks, washing our hands for 30 minutes - rather than 40, being able to do our own buttons up or brush our own teeth, taking a small sip of drink or bite out of food, being able to step on a certain area of the carpet, being able to go to school for half a day, being able to tap the desk 7 times instead of 17 times... All of these seemingly 'little' things can be victories and blessings for people who have been under the grips of PANDAS / PANS and have been facing this turmoil day in day out, these victories are worth celebrating.
Imagine... (PANS / PANDAS awareness)
- Imagine having a condition so misunderstood that it isn't known about by most doctors.
- Imagine having your child transform within a matter of days, your once happy, care-free, joyful, easy going child is now depressed, experiencing rages and has severe OCD. You are mourning for a child who is still alive, yet is virtually unrecognisable in their demeanour and has no quality of life.
-Imagine having most of your day taken up by nonsensical, laborious, time-consuming rituals that leave you drained and exhausted, but no matter how much you want to stop, you are forced to acquiesce to this monster in your mind.
- Imagine having intrusive thoughts every few seconds, horrific visions leave you feeling ashamed and thinking the last thing you would ever want to think, or hearing voices in your mind saying awful things and making threats.
-Imagine having psychosis, depression, separation anxiety, intense mood swings, severe tics, night terrors, severe insomnia, loss of previously acquired skills, decline in handwriting and maths ability, irritability, autistic traits and more.
-Imagine having episodes of pure unbridled fury, where you uncontrollably attack those you love and feel immense distress. You smash things, throw things, hit, kick and scream. Imagine the guilt you would feel afterwards. You don't want to be doing this, it just happens.
-Imagine your child waking up one day, not eating or drinking. You are watching them waste away. Food restriction and anorexia is a symptom of PANS / PANDAS.
- Imagine feeling like you are in a dream (a nightmare) but the world around you feels unreal and you cannot think straight, all clarity is gone and you are stuck in a haze - very heavy brain fog.
- Imagine being a parent fighting for your child's care but being denied life-changing or potentially life saving treatment and being told 'just accept it' or not being listened to when your child is enduring living hell. Imagine being threatened with your child being taken away and put into care due to the misunderstanding around the condition. This happens in both the UK and US.
Awareness is vital 💚