It’s not always overnight…
It was 2013 when I found myself at the local library thumbing through a book about PANDAS. I was scanning the pages for a solution on how to “fix” our son but nothing in this story sounded familiar. Ben didn’t go to bed one night and wake up a stranger to us. He didn’t have obsessions, and his health was not deteriorating before our eyes. My husband told me I was chasing ghosts, and maybe he was right. But I was still slipping into a yearlong obsession to find some answers. So how did I end up here, rifling through this library book like a crazed animal?
At the time, Ben was six years old, and we had already weathered through a handful of disturbances. With the subpar guidance from our pediatrician, all of Ben’s issues had been explained away. The night terrors that had recently plagued him were apparently from the stress of his impending kindergarten graduation. But the graduation had come and gone (he refused to participate in it) and the night terrors were just getting worse. He was having two or three a night, and their effects were spilling into his daytime life; he was exhausted, anxious, and started panicking every time I left the house. We were instructed to get him an overnight sleep study, which revealed that he was perfectly healthy, no sleep apnea.
Today, when I look back at the report, I am appalled by the actual data, minimal to nonexistent restorative sleep percentages. We were given the anxiety diagnosis, and Ben started meeting with a child therapist to learn how to breathe slower and talk down to his “brain monsters” (if only it had been that easy). Our pediatrician also offered an anti-depressant, which we declined. He was six years old, and none of this felt right. One more final blow, we were asked the dreaded question, “Does anyone in the family have a history of mental illness?”. I found myself confessing to our pediatrician that right Ben’s age, I also had panic attacks and separation anxiety. I explained that it eventually went away, however, as an adult, it seemed to have morphed into generalized anxiety that would rear its head during times of high stress and interestingly, during times of illness (any of this sounding familiar yet?). At that moment, after I confessed my dirty little secret, Ben’s health issues were placed in the “Apple doesn’t fall far from the tree,” file, or at least that’s how it felt.
Case closed. Well, sort of. Through all of these appointments and studies, what was never discussed was Ben’s health history. At 17 days old, Ben had spiked a 104 fever and was rushed to the hospital for a full septic workup (including a spinal tap on a fully awake three-week-old baby) and was admitted for five days until the fever subsided. Bloodwork was inconclusive, and we were sent home only to be readmitted four days later when another high fever spiked. Still no answers from either hospital stay, but now our nerves were rattled.
In addition to the random high fevers, Ben’s first year of life was riddled with ear infections, ten in ten months to be exact, and two burst eardrums. By the time he turned three, the high fevers seemed normal to us. Our house had a solid supply of thermometers and anti-inflammatories tucked away in cabinets and drawers. One afternoon Ben came screaming into the kitchen, holding his throat telling me he couldn’t breathe. I was able to peel his hand away to reveal a lump along his jawline so big that it looked like his skin was hanging off the side of his face. I grabbed him and his brother and flew down the highway back to the hospital once again. The week ahead was a blur of ultrasounds, bloodwork, and a harrowing CT scan with contrast. Diagnosis, Cervical Adenitis, an inflamed lymph node in the neck. While under anesthesia, Ben’s lump was eventually drained; we were sent home with a three-month supply of antibiotics. These medical events from Ben’s infancy and toddler years were never brought up and had become this forgotten health history. Why, though, weren’t any of these events somehow related to the night terrors, the fevers, the lump, the infections? These questions wouldn’t leave me, and instinct finally started to kick in. I had to stop shying away from pushing the doctors because I was embarrassed about my own history with anxiety. So that’s how I ended up at the library surrounded by medical journals that I barely understood and stories of children with ICD that came on overnight.
Ben’s anxiety waxed and waned with illnesses, but nothing ever seemed abrupt or life alerting enough like in the stories I had read. I eventually gave up my medical reading obsession. It’s when we let our guard down.
At age 11, Ben went in for his well-visit, which included booster vaccines for DTap and Meningitis. These were two blended vaccines that included seven antigens at once. The appointment had been on a Friday. By Sunday night, he was feverish and complaining of a headache. On Monday the school called, Ben was having a full-blown panic attack, and I had to come to get him right away. I took him straight to the pediatrician, and after a quick eyeballing of his and a glance at his file (you know the one), the pediatrician dismissed us with a “maybe he’s just afraid of shots” comment. Any time I questioned the connection between Ben’s health and his anxiety, I was told again and again “anxiety just runs in families.” This was the norm for us now. Smh!
During the next few hours, Ben sat on the couch sobbed. I had never witnessed anything like this. That night he started having night terrors again and every night after that for the next month. The school mornings became torture; we had to scrape him off the floor and wrestle him into the car. This was a new hell for our family, the intermittent night terrors and separation anxiety was one thing to deal with, but this, this was sheer awfulness.
I started chasing ghosts again, but this time I saw them for what they really were, our genetics. With the help of a few selfless academics that took the time to answer my desperate emails, I was pointed in the right direction. That direction was 50 miles North in Boston. And the day came that we were finally seated in front of a doctor that specialized in PANDAS and PANS. He listened to me rattle off Ben’s symptoms, illnesses, lumps, fevers, and the whole time he patiently took notes. I had been bracing for the mental illness confession I was going to give. But instead, I found myself answering questions about my mother’s sisters who had rheumatic fever as children, their mother who had suffered from debilitating rheumatoid arthritis, and my own mother, who had polymyalgia rheumatic. It even came up that I had tested positive for elevated rheumatoid factor. Autoimmune disease ran on my side of the family. This doctor discussed with us that Ben most likely had a fever syndrome as an infant and toddler (random fevers and cervical adenitis were hallmarks of an autoinflammatory disorder called PFAPA). We walked away that day with a diagnosis of PANS: the next stop, tonsillectomy, and antibiotics. The ghosts had spoken!
Ben had not inherited an anxiety disorder; he had inherited an immune system with a roadmap that had a few mistakes.
Slowly, he started getting better. The night terrors disappeared and, along with them the daytime anxieties. But the years of assault on Ben’s nervous system had created weaknesses and coping behaviors. We had tried talk therapy for him with minimal gains. Now his brain was starting to heal and desperately needed physical therapy. Just like a broken leg that has been put in a cast, Ben’s brain was limping along with no strength to manage even the simplest stressors. A year after his tonsillectomy and antibiotics treatment, the new school year was starting. With his seasonal allergies ramping up along with an end to his leisurely summer schedule, Ben flared, and he flared big. For the next several weeks, we pleaded with him to get out of the car in the school parking lot. He wouldn’t go in; he couldn’t go in. By week seven of this hodgepodge school attendance, we reluctantly enrolled him in a local hospital day program for children with anxiety and OCD. What seemed like defeat ended up being one of the best treatments for him. Ben’s brain was finally getting the physical therapy that it needed, and for ten straight weeks, he participated in an intensive exposure therapy program. He loved it, worked his tail off, and he flourished.
After all of these years of trying to piece together this puzzle, our family was finally coming up for air.
For my son, symptom onset was not overnight. He had so many health issues starting the first few weeks of life, which continued throughout his early childhood. His body was in a near-constant state of infection and inflammation. Add his medical history to a family history riddled with autoimmune and strep-related health issues and it is no wonder that my son has PANS/PANDAS.
Today we know the flares will come, but we now have a plan. We have doctors to call for advice and treatment, and we have a village of families just like ours that we can reach out to. Our hope is that all this hell that Ben has been through had some purpose. I hope his story resonates with a parent out there searching for answers. Please remember that the ghosts and secrets we carry with us are there for a reason.
2 comments to Chasing Ghosts
Jennifer MorrisonNovember 12, 2020
Oh mama. Let me first start by saying this resonates with me. My oldest daughter was 8 when she was diagnosed with PANS… every symptom in the book. I scoured over medical journals, refused to take ‘no’ for an answer, searched for doctors to believe me and not pass me off as crazy. I fought to find hope and help for her and that alone has given me PTSD. There is nothing worse than not being able to help your child… we go to doctors because they are the ones who help; but what do we do when doctors pass you off and refuse to believe you? It is a terrible and hopeless feeling. I was lead to a doctor in Ohio and she is almost fully into remission. I still panic, she is still on a lot of supplementation to help her body to do what it needs to do – and now my youngest daughter is showing severe anxiety. She was diagnosed with PFAPA when she was 12 months, after I took her to the pediatrician for what I thought was recurring strep throat… I scoured over books and articles and I found out what she had and then presented those findings to her dr. He referred her to a Children’s Hospital where she was officially diagnosed. She was prescribed tagamet – which seems to work in 80% of cases. It did for her until we had to get her tonsils/adenoids removed when she was 2 for severe sleep apnea (and I knew it would cure her PFAPA also!) She had the flu in 2019 and turned septic. She was rushed to a Children’s Hospital where she almost died. After that experience, coupled with genetics and her predisposition to immune response issues – she has been terrified of getting sick. She has anxiety going to sleep at night and worries over everything. She has separation anxiety and no amount of reassurance helps. I have her scheduled to go to the specialist who treats my oldest – but the PTSD is rearing it’s ugly head with me. I feel like a boxer being called back into the ring to fight, and I am not able to fight another round. I know I must and I will, and I will fight and I will win – for her…. but man is it rough. I pray she doesn’t have PANS and that it is just (just… ha!) PTSD due to the sepsis experience… but I’m prepared to fight if it isn’t. We are all in this together and your son is lucky to have you!
DeniApril 17, 2021
My prayers are with your son and your family! My son had strep at 1 yo and he has all the symptoms. Also he has a speech delay issue.
Could you please help by sharing the doctors name? The one who reveal the ghost! I haven’t found a good pans dr yet. Please help.