On April 1, 2020, Kerri Archibald’s then three-year-old daughter woke up a seemingly different person. She had developed ticks, couldn’t sit still and was suddenly prone to tantrums.
Her daughter was eventually diagnosed with PANS/PANDAS, a neurological condition that happens in children when an infection causes an autoimmune response leading to inflammation in the brain. While both are the same disorder, the pathogens that trigger PANS versus PANDAS are different. PANS — Pediatric Acute-Onset Neuropsychiatric Syndrome — is brought on by a bacterial infection such as Lyme disease. PANDAS — Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection — is specifically triggered by the bacteria responsible for strep throat.
A relatively new disorder — it was first coined in 1998 — there are still many unknowns, and medical practitioners who will diagnose or treat the condition are few and far between in Canada. Archibald shared her story with Healthing.ca to raise awareness for families, so they might recognize symptoms early on.
What were your daughter’s symptoms?
We noticed ticks right when she woke up that morning, and a lot of hyperactivity. We read her bedtime stories every night and she would just sit and listen, but that night she couldn’t sit still or stop blinking and humming. At that point I just thought something is very wrong with our child.
The other thing we noticed shortly after onset was mood lability. My daughter was acting like she had been possessed. She was such a happy, easy going kid and now everything was tears and yelling and fighting. Later on we noticed absence seizures, which is where her pupils would dilate and she’d stare off into space. She also began to have sensory issues where she wouldn’t wear certain clothes. Separation anxiety also became an issue.
What was your journey like to get her diagnosed?
It was the early days of COVID, so our family doctor suggested we wait a couple of days because she thought it might be stress from the lockdown. I called her back three days later and my daughter was referred to a neurologist, but the wait list was many months long.
In the meantime, I was spending every minute I could researching to try and figure out what was wrong with my kid. I stumbled upon some PANS/PANDAS information. I brought it up to our doctor, but she said it was unlikely as the condition is rare, and suggested we just wait to see what the neurologist had to say.
I kept pursuing PAN/PANDAS because my gut told me that’s what it was. I eventually found a Facebook group for parents in the prairie provinces of PANS/PANDAS kids and started reading and asking a lot of questions. Many of the families had worked with a clinic in Vancouver, so we worked with a doctor there who diagnosed our daughter and prescribed antibiotics. We saw massive improvements — her ticks subsided, and her hyperactivity improved. I thought, ‘okay this is PANS/PANDAS, we now have antibiotics, we’ll do our ten days, and we will have our kid back,’ and I thought that was going to be the end of our journey.
But after she finished the antibiotics, her symptoms came back. She was basically on and off antibiotics for six months. The Vancouver clinic did some additional testing to see what else might be going on and one of her labs came back positive for Lyme disease, which is a main trigger for PANS.
At that point I got very discouraged because I knew a few people who had Lyme disease in Saskatchewan, and it was such a battle for them to get any type of treatment or even acknowledgement of their disease. At this point we had already spent $10,000 at least on testing and medications. My husband had been laid off due to COVID, so it started to become very financially burdensome for us.
I ended up finding a naturopathic clinic in California that works exclusively with PANS/PANDAS, which has been amazing, and the treatment has made our daughter’s symptoms much better. She sometimes has flare ups, usually triggered by her getting sick, but the clinic, which offers telehealth, has helped us manage these.
How has this diagnosis impacted your family?
We spent well over $35,000 on getting our daughter help including appointments, treatments and everything else we do to keep her as healthy as possible. Our friends started a GoFundMe which was able to offset some of the cost.
I ended up being on a medical leave for almost the entire year after my daughter got better. I was stuck in this fight or flight mode and once we accessed the California clinic and her symptoms finally got better, it was like I could breathe again and my body just collapsed, so I ended up being hospitalized.
This condition impacts entire families financially, emotionally and physically.
What do you want other people to know?
So many parents helped us on our journey and if it wasn’t for them, I’m sure our daughter would still be symptomatic. I’ve made it my goal now that we have control of her condition to raise awareness. I don’t want another family to ever have to go through what we and so many other families have gone through. Many kids go misdiagnosed or undiagnosed and I want parents to know the signs and symptoms because I had never heard of PANS/PANDAS before last year.