No, She’s Not 'Crazy': My Daughter’s Struggle With PANDAS

Three years ago, I lost my daughter to a medical mystery. Since then, I’ve come to mark time as before and after her fall into excruciating madness.

It started with a phone call from her grandmother. My seven-year-old daughter was visiting her grandparents in North Carolina for the Fourth of July. She was enjoying the time with her extended family, but had developed a rash in her vaginal area that crept down her inner thighs, causing her some discomfort. The Urgent Care doctor had diagnosed it as contact dermatitis and prescribed a cream to be applied for a few days. With daily use of the cream, a bit more haste removing her wet swimsuit, and some vigilance about rinsing off after playing in the pools and tubing in the rivers, Sophie’s rash cleared up.

Something was different, though. Very different. According to Grammy, Sophie wouldn’t stop wiping after she urinated. She had this alarming feeling of constant wetness that persisted despite the ferocity and frequency of her wiping. She was desperate to feel dry. Snowball-sized piles of toilet paper spilled out of the bathroom trashcan. Flushing the paper invoked a secondary concern that the toilet would clog and overflow. Screams and tears erupted in equal measure as she fought and lost to the compulsion over and over and over again.

Brainstorming over the phone, Grammy and I questioned if, despite no burning or stinging, it was a urinary tract infection or perhaps an allergic reaction to the topical medicine. When she was younger Sophie did experience some vexing sensory issues. At the time, I thought her insistence on soft pants and particular socks and shoes were a continuation of her toddler stubbornness and a sign of her growing independence. She was a very temperamental toddler known for her fits of outrage. By Kindergarten she had settled into her funny, bright, outgoing self. Her current behavior seemed worlds away from the terrible twos, yet oddly linked. I was panicked and worried but also sure that, like many other childhood phases, this too would pass.

By the time she returned to Texas, persistent OCD and a mishmash of sensory issues peppered her days. Horse camp with her cousin became a quagmire of too-tight ponytails and unbearable shoes. On a trip to the Blue Hole in Wimberley, leaving the water and walking on the grass provoked an immediate return to the water to rinse her feet. Clean, dirty, clean, dirty—she was stuck in a loop of repetitive behavior. Her inability to stop her march from the water to the grass caused intense agony and fear in Sophie. Once she moved past the offending sensation, however, she seemed able to carry on with her day. Ponytail secured, boots on, she enjoyed her horse lessons and the culminating show on the last day of camp. Feet cleaned, she happily swung from the rope swings into the shockingly cold swimming hole.

Her agitation waxed and waned throughout July as other odd behaviors started to emerge. A couple of phone calls to her pediatrician’s office begging for a sick child appointment were discouraging. The front desk gatekeepers, upon hearing a description of her symptoms, assured me she would need to be seen by a psychiatrist or a psychologist. The mental health providers I contacted couldn’t see her for months. My child was weirdly sick and needed help.

I have an MA in counseling, and something about my own daughter’s quick descent into OCD was different than anything I had studied. Many kids have sensory issues and can certainly develop OCD, but it was the abrupt change in Sophie that was baffling. How does your child peacefully go to sleep one night and wake up the next day terrorized? It just didn’t make sense. A quick Google search gave me some much-needed hope. Typing in the terms “acute onset pediatric OCD” returned the oddest information.

References to PANS (Pediatric Acute Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) filled my computer screen. The words “abrupt,” “sudden,” “acute,” and “dramatic onset” caught my attention on the Pandas Network website.

According to the Pandas Network PANS/PANDA fact sheet:

A diagnosis of PANS (or PANDAS) means a child has had a sudden, acute onset in multiple neuropsychiatric domains and the trigger is derived from a misdirected immune response to streptococcus or other bacterial, viral, environmental or immune dysfunction.

The non-profit, PANDAS/PANS Advocacy and Support, answered the question “what is PANDAS/PANS?” as follows:

Illnesses including strep throat, mononucleosis, and pneumonia can suddenly bring on a complicated disorder with symptoms such as:

• Sudden personality changes
• Obsessions/compulsions
• Motor and/or vocal tics/choreiform movements
• Generalized anxiety/emotional lability
• Oppositional defiance/rages
• Bedtime fears/rituals
• Separation anxiety/school phobia
• Sensory issues, including issues with food and/or anorexia
• Deterioration in handwriting or math skills
• Daytime urinary frequency
• Hyperactivity

The discovery of this information prompted an immediate phone call to the pediatrician and a request for a sick child appointment. To bypass the front desk screening process, I lied and said Sophie had a sore throat. She got in that day.

I was tripping over my words trying to explain to the pediatrician that my daughter did not have a sore throat, but had experienced these bizarre behavioral changes when she interrupted me, “PANDAS. This sounds like PANDAS.” Simply put, in PANDAS/PANS, antibodies made in response to an infectious trigger mistakenly attack healthy brain tissue, causing a host of neuropsychiatric symptoms.

Sophie tested positive for strep on the 48-hour throat culture, and her blood work showed elevated strep titers indicating her immune system had recently staged a response to strep bacteria. She had PANDAS. We had an explanation for her behavior. My daughter was not in the midst of a psychiatric breakdown. Her rash earlier in the summer was the likely culprit.

The recommended treatment for PANDAS is straightforward but complicated at the same time. Treatment is designed to fight the infection, reduce inflammation, and rebuild the immune system. Antibiotics, ibuprofen, and counseling to address lingering OCD issues provide relief for kids with mild to moderate symptoms. Steroid bursts, Immunoglobulin therapy, and psycho-pharmaceuticals may also be recommended.

Sophie, unfortunately, got worse before she got better. She wore the same shirt to school for two months: a dove gray T-shirt, ironically, with a smiley face plastered on the front. Her doctor wrote her a note so she could wear flip flops instead of tennis shoes. She began to line up everything and write and erase her homework over and over again because her handwriting wasn’t perfect. The excessive wiping continued. My sweet, little love bug began to rage, randomly punching me. She decided her older brother was infected and had to shower if he touched her or any of her things. The school made accommodations for her many tardies and missing homework assignments. It was torture for everyone. Not only was she mentally and emotionally haunted, she also felt like a freak around her classmates.

I will always be thankful for our local pediatrician. She got us kick-started in the right direction. Two weeks of antibiotics wasn’t enough for Sophie, so we looked for additional help. A specialist on the East Coast recommended additional blood work and, eventually, hit on the right combination of antibiotics for the right length of time. (Some doctors recommend years of prophylaxis antibiotics to ward off repeat infections.) All in all, Sophie was back to 95% percent herself by early November. After months of debilitating OCD and full-throttled anxiety attacks, my Sophie was better.

Like many autoimmune disorders, PANDAS has a relapsing and remitting course. Over the last three years, Sophie has had several minor flare-ups—a reemergence of her symptoms we’ve treated with three-week courses of antibiotics. We are currently in what I would call a full-blown relapse. In January of this year, Sophie was exposed to three different people with strep within a two-day period. She doesn’t get physically sick—she hasn’t run a fever or had a cough or cold in years. I know Sophie’s sick by the abnormal behavior that rears its nasty head.

Sophie went from performing as Wendy in Peter Pan Junior in December—memorizing lines, belting out songs, maintaining an aggressive rehearsal and performing schedule—to withdrawing from fifth grade this spring, beaten down by anxiety attacks and afraid to leave her mother. The harrowing anxiety is hardest for her; for me, it’s the rage that carves a hole in my guts. She’s progressed from a strictly PANDAS diagnosis to a more general PANS category, as she is fighting more than strep. Two of her physicians recommend IVIG (Intravenous Immunoglobulin Therapy), but insurance considers it experimental. PANDAS is not considered a settled issue in the medical community, but the National Institute of Mental Health continues to publish compelling research results. For now, at $10,000 a pop, IVIG is a treatment of last resort for us. We have a few more arrows in our quiver before we start tapping college funds.

Although she is still suffering, she is one of the lucky ones. We had a solid diagnosis and treatment fairly soon after onset. I’ve spoken to so many parents whose path was not nearly as straightforward as ours. It can take years to find the right doctor, the right diagnosis, and the right treatment. Psychiatric hospitalizations are not uncommon, neither is homeschooling. I truly wonder how many children diagnosed with mental disorders have treatable medical problems. It’s way past time we accept that the brain is part of the body, that the mental and physical are obviously linked. It’s my hope that emotional and behavioral interventions routinely include complete medical evaluations.

I’m still hopeful for my own daughter. Her fortitude is cracked and her spirit is wounded, but she still knows how to fight. I fight with her and for her. Together, we mourn the before but know that the after is full of the promise of easier days.

For more information on PANDAS, visit pandasnetwork.org. Several Facebook groups also offer great advice and support including PANDAS PARENTS and PANDAS/PANS-Texas.

Originally published on Alamo City Moms Blog.