Please read ASPIRE’s interview with Romy, a remarkable young lady. Also, read her Instagram post on PANS PANDAS and watch her video on OCD; I know you will be impressed.
Romy runs an Instagram and Facebook account Tourettics Unite to spread awareness on Tourettes, OCD, and PANS/PANDAS. She and I have been touch a little bit over the past few months, and I have been impressed by her work. Recently Romy shared a video of her reciting a poem about OCD and Mental Health that I want to share with you all. So we sat down remotely and talked about her story, her recent efforts to pursue a PANS PANDAS diagnosis and treatment, and why she wants to help spread understanding about these conditions.
Romy was diagnosed with OCD, then autism, then Tourettes over several years during her childhood. Her OCD came on fast and furious sometime after two strep infections at age eight. Recently she has had two infections that resulted in a worsening of symptoms, including new obsessions and compulsions, insomnia, anxiety, depression, brain fog, and sensory issues. Then Romy had and antibiotic for another infection, which alleviated many of her symptoms. It all screams PANS. She and her family are working on getting a diagnosis and getting proper treatment. I know the PANS/PANDAS community will recognize the correlation of an infection with sudden worsening of some symptoms and the emergence of new symptoms, all to be somewhat alleviated with antibiotics. PANS PANDAS Symptoms
ASPIRE’s Chat with Romy from Tourettics Unite
Gabriella: Thank you so much for your fantastic explanation about PANS/PANDAS on your Instagram account. I remember reading that a month ago and being so impressed. Then I saw the video which will share, and so much of what you said about OCD absolutely hit a chord with me. So, we appreciate you taking the time to answer some questions for ASPIRE and our community.
Romy: I am incredibly grateful to have received a message from you on Instagram; thank you for liking the poem that I wrote! I would be very happy for you to share it along with what I wrote about PANDAS / PANS, thank you so much for getting in touch and being so kind.
Gabriella: We believe strongly in the power of patient-driven awareness and love to promote the work people are doing out there.
Do you have a diagnosis of PANDAS /PANS?
Romy: Right now, I am not formally diagnosed with PANDAS / PANS, but my family and I are certain that I have it. In March of this year, I had a throat infection and eyelid infection that led to OCD that included a plethora of different obsessions and compulsions (mainly mental ones) but also included reassurance seeking and repeating certain words. It also led to an abrupt onset of severe insomnia, where I couldn’t get to sleep and then waking up after 3 hours, hearing my thoughts ‘arguing’ in my sleep. I also had mood swings, severe brain fog, personality changes, anxiety and depressive episodes that were not present prior to this onset along with gross motor coordination difficulty with a loss of proprioception, and a loss of sensation where parts of my body would go numb, and then my entire body would follow. This also caused the return of my tics, which had been virtually non-existent for a while as I managed my Tourette’s thought diet (eliminating food sensitivities).
Around this time I also developed an infection on my ankle which had spread and turned purple, which required me to take antibiotics (penicillin), thankfully the antibiotics also reduced my psychiatric and neurological symptoms to the point where they are manageable. I can function, and I feel like myself again; going gluten-free and consuming turmeric and zinc supplements has also seemed to have a positive impact on this specific flare.
I hope to one day find a doctor who is aware of PANDAS/PANS so that I can receive a formal diagnosis. My Tourette’s and OCD did originally come on overnight at the age of 8, where I became severely disabled and lost the ability to do daily tasks because my Tourettic OCD rituals took 8 hours out of the day, I did have 2 strep infections around the first few months of this onset. However, I didn’t get a blood test until 2 years later at the age of 10, but apparently, nothing showed up.
Gabriella: What makes you so passionate about spreading awareness of Tourette’s, OCD, and PANDAS / PANS?
Romy: I am so passionate about spreading Tourette syndrome awareness because it is such a misunderstood condition and some people say they ‘wish they had Tourette’s’ when they have no idea what it really entails, and some people think it is funny, but there is nothing funny about an individual being in pain or distress from ticcing constantly or begging their parents to make it stop. I also hope that people are able to have better management strategies for their Tourette’s so that there can be a reduction in symptoms and people can have a better quality of life, I also hope that the advocacy leads to more acceptance and compassion, so that we can live in an inclusive society where people do not face bullying or discrimination for their differences.
I am passionate about raising awareness for OCD because many people don’t seem to understand it. A lot of people just think it’s about being neat, meticulous and tidy, when in fact it is a debilitating mental illness which can take hours out of your day with time-consuming rituals and can cause intense feelings of fear, shame, and anxiety. It can cause you to get stuck in your head with mental compulsions and have the most distressing intrusive thoughts playing on a loop, so it is a lot more than the stereotypes, and it is important for people to know this so that people dealing with the condition can be met with understanding, compassion and empathy, rather than ignorance and ridicule.
Raising awareness of PANDAS/PANS is important to me because there are countless individuals out there who have had their lives turned upside down by this condition, yet are not taken seriously and are not receiving the appropriate treatments. It is absolutely barbaric because people are suffering from debilitating and distressing symptoms and are not getting support due to this ignorance. It baffles me how some doctors still seem to believe that PANDAS / PANS is controversial. So many people have shared their experiences, and it is no coincidence that people go into remission with the appropriate treatments that target the triggers and decrease inflammation. Without the appropriate treatment, people are left to suffer; the root needs to be addressed for all symptoms to be remedied because even if treatments for psychiatric conditions were to reduce the OCD and anxiety to the point where they are manageable, an individual might still be left with severe brain fog, decline in academic performance and motor coordination issues for example, which can still wreak havoc on somebody’s ability to function. Therefore it needs to be diagnosed as soon as possible and treated appropriately, not just as a psychiatric condition, but using therapies in conjunction with PANDAS /PANS treatments. The fact that people have to advocate tirelessly just to be listened to is absurd when just having doctors who are open-minded, compassionate, and have the knowledge of PANDAS / PANS could save an individual from years or even a lifetime of distress. We desperately need people to speak up about PANDAS / PANS, and it is amazing to see people sharing their experiences.
Gabriella: How old were you when you received your OCD, Autism, and Tourette diagnoses?
Romy: I am currently 17 years old. I was diagnosed with OCD at age 9, Autism Spectrum Disorder at age 12, and Tourette syndrome at age 15. I am still hoping to get a formal PANDAS / PANS diagnosis if we can find a specialist.
Gabriella: What are some of the hardest parts of dealing with OCD?
Romy: One of the hardest parts about dealing with OCD was that my mental compulsions and intrusive thoughts would cause me to be stuck in my head to the point where I struggled to focus on anything around me. I couldn’t watch TV, write properly, focus on anything or read because I was so consumed by the things going on in my mind. My OCD convinced me of some very horrible things and caused me to feel drenched in shame and have intense feelings of fear because I was terrified that my intrusive thoughts would come true.
I struggled with morality OCD, and my thinking was very rigid and black and white, so I didn’t know what was ‘right’ and nothing made sense to me, so it always felt like I was doing something wrong, which made me feel deep sadness, shame, and frustration directed towards myself. One of the hardest things about the Tourettic OCD was that my rituals prevented me from being able to dress myself and I would spend hours in the bathroom, I was totally reliant on my parents, and my rituals took 8 hours out of the day, and I was often late to school as my mornings were filled with compulsions and rituals.
Gabriella: I think it is important to educate people on how not everyone with OCD has physical compulsions. We may have many mental compulsions that go along with our intrusive thoughts, but not having the physical compulsions can be such a roadblock to a timely diagnosis. It was a weird relief for me to have a physical compulsion because I could say – See! I actually do have this, so stop saying it is “just” anxiety. Of course, it is all is hellish.
Romy: I also get the bit about the physical compulsions being a relief, as the mental compulsions are hidden. Most people have no idea what’s going on, but even though the mental compulsions are not outwardly visible, they still have a massive impact on our lives as it makes it virtually impossible to focus on simple things.
Gabriella: What strengths do you think you have gotten from your journey?
Romy: I believe that my journey has taught me an abundance of life lessons. It has taught me not to take anything for granted because everything can change overnight. It has also helped me to develop resilience, courage, and strength and has made me a more empathetic and compassionate individual.
As you and I have discussed, it is exceedingly difficult at times to get a formal diagnosis of PANDAS/PANS, especially with the Autism diagnosis. You are right, I too have heard ‘it’s just Autism’ many times, along with ‘it’s behavioural.’ So, it does seem to be a long road to diagnosis. Still, I hope that one day all relevant physicians will be informed and educated on PANDAS/PANS so that people can get an accurate diagnosis as soon as possible. It is very difficult to know where to be referred to as many doctors (as you say with the Tourette’s specialists) don’t seem to understand PANS/PANDAS. When I was younger, my GP just told my parents not to believe everything you read online’.
Thank you, Gabriella, for the link to the symptom rating scales as well. I will see if I can track the severity with the flares, and hopefully, that will help me get a formal diagnosis one day. https://aspire.care/symptoms-diagnosis/symptom-tracking-tools/
Gabriella: I am going to work on connecting you to some more support that is local to your area. And my door is always open too. Is there anything else you would like to add?
Romy: It is great that you run this organisation and that you have so much experience with your own PANS, and with your children, so you have a lot of knowledge and wisdom to share with other families. I am glad you can see an integrative physician and naturopath to help your family treat the condition. I like the idea of using natural ways of addressing biochemical imbalances, getting to the root, addressing metabolic disturbances, and decreasing inflammation can be very effective.
I hope that one day PANS/PANDAS is more well known by professionals so that it is easier to find help and effective treatments.
Gabriella: Romy, we wish you lots of good health and success in finding a doctor that listens, understands, and will help treat. We will work on connecting you with some friends in your area of the world. Thank you for taking the time to talk to us and share; you are an impressive advocate!
Hijacked Mind – A poem about OCD and Mental Health by Romy. W
Romy’s Instagram Post on PANS/PANDAS
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. This isn’t just a story to disregard; this is life for people with PANDAS and PANS before diagnosis or effective treatment. This is hell. 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 accurate diagnosis and treatment. But this can take years when it shouldn’t. And children are having chunks of their childhood stolen because of this ignorance, and even their entire lives if the accurate diagnosis isn’t given. There have been kids and adults with this who say they want to die, and if anything at all can relieve these people’s pain and suffering, then why isn’t it done?
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 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
#PANDAS #PANS #AE #OCD #ChildhoodOCD #suddentics #suddenOCD #neuroimmune