To start I'm going to explain a little about what PANS/PANDAS is and the diagnostic criteria, before sharing some of my story.
There is no known estimate for how many cases there are in the UK but in America it is estimated that 1 in 200 children have PANS/PANDAS. In a high school of 2000 students that's 10 students, many of which are likely to be undiagnosed or misdiagnosed. How many children are hospitalised in mental health facilities, when really their immune system is attacking their brain? Children need prompt diagnosis and care in order to receive the best outcomes. Delayed treatment leads to a higher likelihood of chronic illness.
90% of GPs don't know what PANS/PANDAS is. That means you have roughly a 1 in 10 chance of the first doctor you see knowing how to help. It's no wonder it is so common for diagnosis to take years. It took me 8 years and over 20 doctors to get the correct diagnosis and treatment. I lost all of my teenage years to a treatable illness.
I am diagnosed with immune-mediated behavioural change (PANS), after many years and being misdiagnosed multiple times. PANS stands for Peadiatric Acute-onset Neuropsychiatric Syndrome, a subset of PANS is PANDAS, Peadiatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
The diagnosis criteria for PANS is:
"Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is defined by the rapid onset of obsessive–compulsive disorder (OCD) or eating restrictions and co-morbid symptoms from at least two of seven categories:
Anxiety (particularly separation anxiety).
Emotional lability or depression, Irritability, Aggression, and/or severely oppositional behaviours.
Deterioration in school performance related to ADHD-like behaviours, memory deficits, and cognitive changes.
Sensory or motor abnormalities.
Somatic signs and symptoms, including sleep disturbances, enuresis, or urinary frequency.
(Swedo et al. 2012; Chang et al. 2015). Acute onset cases that are triggered by Group A streptococcal infections may meet diagnostic criteria for both PANS and PANDAS." - Children's e-hospital
The diagnosis criteria for PANDAS:
"Presence of OCD and/or Tics.
Pre-pubertal onset.
Acute onset of symptoms with an episodic pattern.
Association with a neurological abnormality.
Temporal relationship with Group A strep infection (Determined by a raised ASO titre, Anti-Dnase B or isolation of group A streptococcus from a throat or skin swab)." - Children's e-hospital
Essentially PANS/PANDAS is caused when antibodies get through the blood brain barrier and attack the basal ganglia, causing inflammation in the brain. Because the basal ganglia controls functions such as emotions, motor control, and behaviour, it is no surprise that both neurological and psychological symptoms follow.
For me and I imagine many others, diagnosis after diagnosis, the list of labels just kept getting longer. Some were formal diagnoses and some just given verbally. By the age of 21 I had at some point held all of the below labels and diagnosis' ME/CFS, Chronic Pain, PTSD/needle phobia, Anxiety, low mood, Chronic Daily Headache, iron overload, vitamin D deficiency, Tourette’s, non-epileptic seizures, Dissociation, FND…
This all started when I was 13 after having tonsillitis/glandular fever, the GP was never sure which. I’ve seen over twenty doctors in the last eight years, lost all of my teenage years to chronic illness, and still, I’ve come out fighting. Some were specialists, some GPs, and some peadiatrics. I kept being given diagnoses that had little to no treatment available, or what was available hadn’t worked.
My first symptoms at 13 were fatigue, intrusive images and avoidance, brain fog, headaches, sore throats and pain. At 14 my motor tics started, at first I was jerking my neck but that rapidly progressed to complex movements and tics in all areas of the body. Almost exactly a year later my vocal tics started, at first I was meowing, but within weeks I had coprolalia, complex sentences and more.
Now, the diagnosis criteria for PANS states you must have OCD or problems with eating, I wouldn't particularly say I have problems with eating nor do I have an OCD diagnosis. I do have symptoms of PTSD, for me this caused intrusive images and avoidance of feared objects, words, and places. The symptoms started very suddenly, initially I was getting nightmares and I was convinced if I wrote a poem every night before bed then I wouldn't have nightmares. Looking back on things these symptoms could have been my body's version of PANS OCD.
Although I still personally believe I have PANDAS, because it has taken so long to get a diagnosis my strep levels were normal by the time I was tested. This meant there wasn't enough evidence to support a PANDAS diagnosis. My doctor did explain that they can't 100% rule out PANDAS as it is possible my strep levels were high in the past but because of the time scale they could have gone back down. Although upon testing I was positive for mycoplasma pneumoniae, a known trigger for PANS.
In the first few years of illness I spent months mostly bed bound with fatigue and weakness, my parents would have to wake me to eat. For a good few months the only thing I could stomach were crackers, at another point it was Jaffa cakes, and for a year I insisted on only eating carrots for lunch. There were phases where I just craved fresh fruit and vegetables, I didn't want anything else. There was even a point I was turning down sweets and chocolate, very unlike me I have quite the sweet tooth!
I thought I had no chance of getting better. When I was younger, I would count down the months, the years, saying next year I’ll be better, next month I’ll be able to do x, y and z. It never happened. Constantly hoping for improvement and not getting it is depressing, so I gave up hoping for recovery and started to plan life around my illnesses. I accepted that this was my life, and I would make the best out of it. Fortunately things are looking a lot more positive now, but it is still a lot to process.
Over the years I have had physio, CBT, taken melatonin, clonidine, multivitamins, ironically Iron at one point (definitely wasn't needed), fexofenadine, and been suggested many more meds that I turned down.
I would lay in bed during summer break listening to other kids play outside, I was stuck staring at my walls. It hurt that I couldn't join in. Often my blind had to be shut because the light was too bright, shutting out the summer completely. At the time my bedroom was cream in colour, I think that traumatized me to some extent, as I now insist on brightly coloured walls to the point some people have joked they need sunglasses to enter my room! At times even watching TV or listening to the radio was too overwhelming. When I could watch TV it was often children's shows despite me being a teenager, as that was all my brain could handle.
Over the course of each year my tics and fatigue waxed and waned, normally getting significantly worse in the winter. Tics so extreme that I was punching walls, arching my back, bending spoons, falling to the ground, or even smashing things. It was very scary at times. Vocally my tics ranged from meowing, repeating banana/pizza, to swearing, screaming, singing, and complex phrases.
School became very difficult to attend with all my symptoms. I was attending part time for around a year, but the time I spent in school steadily declined. By year 10 I could no longer attend. After waking up one morning unable to stand let alone walk, I spent several months bed and house bound. I was too ill for education in school, after six months of absence the council provided at home tuition for English, it was another few months before Maths was added. In the October of year 11 I was put into an online Science class. Somehow I still managed to leave high school with three GCSEs, despite drawing tics, fatigue and dissociation making learning very difficult.
By age 15/16 I was totally losing control of my body, I was acting like a toddler, would run off if someone wasn't watching me, play with toys, grab at knives and sharp objects, and so much more. One particular day I ended up sitting for hours sorting coins by currency and colour, totally lost to the world. On another day I fell asleep still in a childlike mindset, I had my eyes shut describing my dream to mum as I went off to sleep - I was a pterodactyl flying over a forest and I landed by a lake, mum is always amazed I remember that so well.
Scarily when I was in this state if we were up high or near water, I would try and jump. We went hiking one day and my parents were having to hold my wrists with an iron grip to stop me jumping off, thank goodness they did. It wasn't me, I felt like a passenger in my own body, I could see what was happening but could do nothing to stop it. A psychiatrist once asked me why I was talking to him like a child, it felt quite condescending. How was I supposed to know what was going on? I couldn't even communicate properly at this point. I think he just couldn't understand the drastic change in my behaviour since the last time he had seen me.
After high school I studied an art course designed for SEN students for a year. It was fun and the art was like therapy for me. Only needing to attend two half days a week worked well for my fatigue, however my tics were another story as there was another student with tics and we would set each other off. On a trip my tics spent the whole journey home scraping my knuckles along the back of the bus seat, another time I threw a radish* across the room, and on observation day my tic punched my teacher.
*We were using fruit and veg as part of an art project. They also make a great alternative to red crayons.
Between tics, fatigue, and dissociative symptoms I spent most of the last 8 years using a wheelchair, and a fair portion using a walking stick. I have always loved walking and getting out exploring so this was really hard for me. We did get me to some pretty amazing places in my wheelchair though, through thick mud, up hills, over gravel, we even attempted a few beaches!
However, as the list of diagnoses kept getting longer and my symptoms still weren’t fitting into the neat little boxes of these labels, I started to wonder do I really have all these things. Is there a more straight forward explanation? I have accepted many diagnoses over the years, but some just really didn’t feel right.
At 21 the seizures started, at first it was one or two random ones that we chalked up to bad tic attacks. As they got more frequent and concerning, we realised they definitely weren't tic attacks, so we started to call them "episodes". I Spoke to my neurologist and they believed this was all down to Tourette's and they weren't concerned, despite these episodes happening up to 15 times a day, and me telling them that I believed this wasn't Tourette's. The doctor that diagnosed me with PANS saw one and verbally told me they looked like non-epileptic seizures.
After some research and talking to various people, I came to the conclusion that it was possible I had untreated PANDAS. So, I paid to see a private specialist as very few NHS doctors specialize in this.
...After a blood test, a physical exam and medical history review, the doctor concluded that while there isn’t enough evidence to confirm PANDAS, there was enough to diagnose immune-mediated behavioural change (PANS).
I was started on a course of antibiotics (azithromycin) and steroids (prednisolone). The antibiotics were for two weeks everyday and then a further four weeks taken three times a week. For the first five days I took the steroids and some omeprazole to protect my stomach. I had also started taking Vitamin D the month before after my blood results showed I was deficient. I didn’t hope too much as the less I hope for, the less disappointment there is to face.
Within 24 hours my seizures had slowed to a stop; over the course of the next few weeks, I noticed my tics were milder, my fatigue had reduced to just tiredness, my noise and light sensitivity had lessened, my itchy skin had gone, dissociation had reduced, and my headaches were less often. Overall my quality of life greatly improved.
I have spent eight years misdiagnosed. I am not fully back to normal but seem to be on the road to recovery, although my doctor did warn there is potential for relapses with exposure to infections. Hopefully if/when a relapse occurs as we now know the cause and treatment it won't be so bad. The difference the right diagnosis and medication made in such a short time is amazing and I am very greatful. I have my fingers crossed that remission lasts a long time.
If something doesn’t feel right, there is nothing wrong in doing your own research. Of course, you need to check that the sites you visit are reliable sources of information and be careful you don’t self-diagnose everything on the internet. Still, all in all, the internet is beneficial in finding out about lesser-known illnesses. I say lesser known as I don’t believe immune-mediated behavioural change or PANS/PANDAS is rare, simply underdiagnosed. It really makes me wonder how many people are suffering because this type of illness is not widely known.
Now on the brighter side I have managed to go both rock climbing and boulder climbing, walked for a decent distance on days out, and upped my hours at work. I am currently around 80% recovered, we don't know if I will ever reach 100% but my quality of life far surpasses what it was only a few short months ago.
Written by Ellen Adby
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