Do you give your kids a cute little nickname? For us, Max was our little monkey. Happy, bubbly, cheeky and kind is what summed up our boy. Our gentle giant – so much taller than friends his age, but with a tender soul.
He now has another name attached to him, but although this one sounds cute too, it is anything but cute: PANDAS.
It stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection.
If only it was an infestation of cute black and white fuzzy animals that make us laugh in YouTube videos when they play roly-poly in the snow.
In late February 2016, just before his seventh birthday, Max and his little sister both came down with a virus. Nothing out of the ordinary for two primary school-aged children. They both had high temperatures for four days and were fine after that. For two days, everything was back to normal. Then I received the call from school that we all dread.
Max had been in class, and suddenly became extremely dizzy. He told his teacher who tried to move him to sick bay, but in the process he became weak and threw up just outside of his classroom door. His wonderful teachers and school staff looked after him until I picked him up. At first, I thought he had caught the gastro that was going around, but he didn’t vomit anymore, and he complained that the room continued to spin.
I took him to the emergency department at a Sydney hospital, where he was seen to by the neurology team. They quickly admitted him for the night to remain under observation. The bouts of vertigo came and went over the 24 hours, and he was released from hospital the next day, the day he turned seven-years-old. The team believed that he was having vertigo attacks that had been brought on by the virus, and that he may have an inflamed vestibular nerve, which controls balance. An MRI was ordered to rule out anything else. They were hopeful that the vertigo would slowly start to settle, and it would be gone within six weeks.
The next six weeks presented with only a handful of days at school, and a lot of lying down while we tried to support Max through this terrifying time for him as best as we could.
The vertigo subsided and disappeared, but this was replaced with extreme separation anxiety and anger that quickly turned to rage and violence. What happened to our gentle, kind, stickler-for-the-rules boy? We had now taken to locking ourselves in our bedroom to avoid being attacked, and to protect our daughter. We feared our son and what he could do to us during his super human strength rages and aggressive episodes. And worse still, we couldn’t communicate to him during these episodes – he looked like he was having an out of body experience.
Melinda Hildebrandt speaks candidly to Mia Freedman about parenting her daughter who has autism and is deaf. Post continues.
Our GP advised that severe vertigo can bring on anxiety and depression, so we sought the help of a child psychologist. But we could not shake the feeling that something in our son had changed so rapidly after his illness.
Months of psychology and never-ending support from Max’s school resulted in the behaviour slowly subsiding towards the end of the year to where we would see rage (but not violence) maybe once a week, as opposed to twice a day every day.
As 2017 began we were worried that Max’s anxiety would peak again with the change of teachers and classrooms, but his year went smoothly to our surprise. That was until December, when his irrational fears and anxieties started to slowly creep back in.
We went back to the cognitive behaviour techniques we had learnt with the psychologist, but it only got worse. We hoped that the end of the year and a six-week holiday break would give him a rest, but it only got worse. We were being screamed at and attacked a minimum of three times per day.
So, we sought out a new psychologist, and at our first meeting with her we kept drifting back to the fact that all of this out of character behaviour began after the virus. She agreed that it all seemed to stem from this virus (for one reason or another) and hunted high and low, spoke with colleagues and Googled all his very confusing symptoms.
Then she sent me an email – “Have you heard of PANDAS?” Yes, I had! When his aggressive behaviour started in 2016, I Googled out of desperation ‘aggressive behaviour after a virus’ and had come up with very bare minimal on it. I had asked our GP who hadn’t heard of it but ran a blood test and it had come back clear. I had also asked numerous other doctors and specialists, and they too said that it was just his behaviour and anxiety and nothing more. They had also not heard of PANDAS.
Two years on, and PANDAS was recognised by the National Institute of Mental Health and there was so much more information out there. This horrible autoimmune condition which attacks the brain had only started to be recognised 10-12 years earlier and a lot of the medical profession was still unaware of it.
Back to the GP, and I asked for a referral to a paediatrician I had found who thankfully is based in Sydney and has experience in diagnosing and treating PANDAS. I was lucky enough to secure an appointment two days later.
Our new paediatrician agreed that Max was clinically showing very definite signs of PANDAS and that his virus from two years ago could be causing all his behavioural issues. Another blood test was carried out, and results showed that his body was currently trying to fight off over three times the highest acceptable level of strep in his blood. Our paediatrician emailed us immediately and called us back in to discuss treatment first thing after the weekend.
Max is now on an antibiotic (which is currently not subsidised by PBS), plus a cocktail of vitamins and minerals as his body has been severely depleted after fighting all this time, including iron, zinc, Omega 3, probiotics, Vitamin D and magnesium. Max will be on this antibiotic for at least six months and perhaps much longer, but our paediatrician is hopeful that we will have our son back within 30 days. So, we wait. And watch. And cross our fingers. And hold our collective breath.
And while I am waiting, I decided that I could not have another family go through what we have all been through these last two years for something that was still so widely unheard of. So please, I beg of you to share this article, talk to your friends, talk to your children’s teachers and doctors and make them aware of this. They estimate one in 200 children suffer from PANDAS but sadly it often goes undiagnosed, or worse it is misdiagnosed as ADD, ADHD, Tourette’s, bipolar and/or autism for which the treatment is vastly different, meaning early intervention is missed. All this, from “just” a virus.
If you ask our son, he will tell you that it wasn’t “just” a virus. Ask his sister, ask his parents and grandparents and we will tell you too.