One Year On: Our PANDAS Journey
(First written for Substack)
Inching our way into the boring glory years
The combination of a four-year-old and a two-year-old can undoubtedly be hard work. Our eldest daughter, Aimi, was born just before COVID-19 rocked the world, and her younger sister arrived as we were flexing in and out of lockdown. In those first few years we ran the full gauntlet of sleepless nights, endless bugs, toddler tantrums and niggling anxieties. Being expats without the support of a local family network added an extra layer of challenge, but like all parents we muddled through, we (mostly) kept laughing, we (mostly) kept counting our blessings. Our kids seemed to be thriving and slowly we began inching our way out of survival mode.
When Aimi was four-and-a-half, we were finally able to celebrate the wedding that COVID had postponed, and spent a magical June day rejoicing with friends and families, with our two little daughters as bridesmaids. It felt as though we had made it safely through the hardest years and were about to embark on a gloriously boring period ahead.
The fever that changed everything
A month after we got married, Aimi came home with a fever. We were old hands at these fevers by now, so we gave her some juice and paracetamol and tucked her into bed. The next day she seemed fine — her lively and larger-than-life self, brimming with ideas and opinions and keen to go to school for end-of-term festivities. A few days later, we began noticing some strange behaviour. Having (finally) mastered the art of sleeping soundly through the night, she started waking up with nightmares and night terrors. She started touching random objects and saying ‘I think I touched this, but I don’t know.’ She started hitting her beloved little sister (and us), and throwing terrifying rages. At first we wondered whether this was just end-of-term tiredness, or perhaps one of those developmental ‘leaps’ we all love to talk about. But as more days went by, our bright and brilliant and uber-independent little girl seemed to be disappearing in front of our eyes. It was like a complete and acute personality transplant.
A diagnosis without clarity
Our GP immediately referred us to the local hospital. There, Aimi was diagnosed with PANDAS — Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections — a rare autoimmune disease that affects some children in the wake of a regular strep infection. Rather than fighting the invading bacteria, antibodies start attacking the body’s own brain cells, causing inflammation which leads to an acute onset of all the disturbing symptoms we had been observing in Aimi. Along with our family and friends — and, we discovered, a majority of the medical profession — we had never heard of PANDAS before. There is no definitive test to ‘prove’ it; diagnosis rests on the particular combination of symptoms and on its trajectory of repeated remissions and flares. And there is no agreed best treatment. From the outset we had to muddle our way through a mass of conflicting theories, opinions and scepticism. PANDAS is seen as ‘new’ and ‘controversial’ as a diagnosis — but for the families that are genuinely living with this disease, it is very real, and can feel completely terrifying.
Searching for answers
Aimi started off with two weeks of antibiotics, as advised by the paediatric team, to clear the strep infection. But after that, we felt largely abandoned. We were put on a five-month waiting list for an organisation specialising in behavioural difficulties, but five months seemed too long to wait and we started looking for alternatives. I quit full-time work so I could look after her, which added a financial burden to our situation, as we were simultaneously throwing money at anything that ‘might’ help. We tried acupuncture, homoeopathy, reiki, an anti-inflammatory diet, vitamins and essential oils. We read books, read articles, and reached out to specialists. No-one quite knew what to advise, what to say. Even more disturbingly, no-one quite seemed to believe us, or understand the extent of the trauma we were going through.
Getting better - but not ‘back’
After two months, Aimi seemed a bit better. The OCD was less obvious and she could cope again in social situations. But I could tell she wasn’t properly ‘back’ — there was part of her that was still missing. Despite managing to hold things together at school, her behaviour at home remained out of control. Bedtimes and night times were a disaster zone. Our family unit was suffering. Our nerves were frayed, and we struggled to protect her little sister from the outbursts and rages. Aimi herself was sometimes painfully aware of this. She would say heartbreaking things like ‘My heart didn’t want to hit you but my head told me to’ or ‘I want to get the real Aimi back’ or simply ‘Mummy, when will I get better?’
Fighting to be believed
In the last year she has had five of these ‘flares’ which tend to last around eight weeks. We think the main culprit is strep, but many other common infections can act as triggers. And it has taken us a year of fighting to be believed by the medical system. Despite getting an early diagnosis — which in the experience of some families can take years — we lost this potential advantage through the insistence of our doctors that there HAD to be evidence of high strep counts with each flare. Not only is such evidence inconclusive, it also became unavailable as Aimi quickly (and understandably) developed a terror of needles. We have been accused of being hypervigilant, hypochondriac, hysterical. I’ve been told that since she’s my first child I’m probably just ‘naturally more worried’ about her than her little sister. We have been told she has psychological issues, that we are looking for a label to excuse our child’s bad behaviour, that ‘there is nothing wrong with her.’ It’s only a year later that we have finally found a specialist who fully believes us, is able to advise us on a somatic plan and can help us to find a path forward. Simply being heard and being believed feels a huge relief. I know from speaking to other parents with PANDAS kids that this is often the biggest challenge. Since it’s a ‘new’ disease with so much about it still unknown, parents are often left feeling that they are screaming into a void, disbelieved and discredited, while really sick children go untreated.
The hidden toll
The range of emotions we’ve been through in such a short time has been intense: disbelief, shock, anger, grief, back to anger, bone-crushing sadness, anxiety, worry, back to anger, irritability, exhaustion. And loneliness. Not that we haven’t been surrounded by love and well-meaning offers of support, but so much of this journey goes on behind closed doors. Many times when we are out with Aimi, people will say ‘oh but she seems fine!’ and her teacher says the same. We understand this is meant to be reassuring, but it’s hard to respond to. Because we know she’s not fine, and we know the struggles we face at home. She might pass as fine for a four-year-old, but she’s now almost six. We know she’ll ask us strange and dark questions, whisper paranoid fears when no-one else is listening, wake screaming in the night. We know we will have to run this gauntlet again, and maybe again after that. At the school gate, I mumble something like, ‘She’s definitely improved, but I think there’s a longer road ahead.’ Privately, though, I’m in a continual state of PTSD and grief, stuck on high alert. Even in the intervals when Aimi does seem to be recovering, we live in the shadow of a wrecking ball that can smash into our lives again at any moment.
Counting blessings and losses
Starting a new school year feels like playing Russian roulette. Because a cold could trigger another flare. Or not. Covid certainly could, and flu. Strep, definitely. Toothaches, belly-aches, unlikely — but maybe. Mould exposure? Quite possibly. And as we compare who she is now to the ‘real’ Aimi, we realise this is a moving target. Although we remember who she was in June 2024, we don’t really know who she would be now had none of this happened. Are we trying to get her back to last year’s pre-PANDAS version of herself, or working towards what we think the ‘updated’ Aimi should be like? Which behaviours are normal for a spirited five-year old, and which are symptoms of an inflamed brain? Where do we set the boundaries between making compassionate allowances for a sick child, and handing out red cards for totally unacceptable behaviour? Will she be able to keep up with her peers, or will we need to look for specialist help?
We have been lucky in some ways. Lucky to get a quick diagnosis so that we knew what we were fighting, and lucky that we have finally managed to access sympathetic and informed medical care. Lucky that Aimi is so young, her brain (hopefully) still plasticine-y enough to make a full recovery. Lucky that we have the loving support of our family (even at a distance) and the few understanding friends who have not backed away; lucky that we have the resources to be able to help Aimi, and a solid foundation as a couple. So we still try to count our blessings even though I often feel like screaming why her, why us, why this? Because there is also an undeniable element of feeling distinctly unlucky — and completely heartbroken.
Moving towards a greater understanding
PANDAS PANDAS is still poorly understood, under-researched, and often dismissed. Families like ours shouldn’t have to fight so hard to be believed while watching our children unravel. For International PANDAS Awareness Day, my hope is simple: that more parents, teachers, and doctors learn to recognise the signs; that more research is funded to unlock treatments; and that no parent is ever left feeling they are screaming into a void while their child suffers.
Awareness alone won’t cure my daughter, but it might save another family from the same loneliness and disbelief. And the more people know, the more they can begin to understand the reality of what PANDAS children and their families are going through.
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If you’re looking for more information on PANDAS: PANS/PANDAS UK and The London PANS Clinic are good places to start.
Disclaimer: I don’t profess to be any sort of expert on the range of (convoluted and complicated) human emotions that I periodically choose to write about! These are merely personal reflections based on personal experiences.
