We’ve had a fairly peaceful 5 month stretch on the PANDAS front. For anyone who may have missed what that is, it stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. In children with PANDAS, instead of successfully fighting off strep, the body’s own strep antibodies cross over the blood brain barrier (which becomes permeable in the presence of the inflammation that happens during an active infection) and attack the brain. With the brain under attack, PANDAS-afflicted children develop neuropsychiatric symptoms like Obsessive Compulsive Disorder (OCD), Oppositional Defiant Disorder (ODD), Disordered Eating, Motor Tics, Anxiety, Aggression, Depression, Sensory and Sleep Abnormalities, Behavioral and Developmental Regression, and more. Trust me when I say that, as a parent, it’s a heartbreaking and terrifying experience to watch your child go through. One of the biggest problems with this illness is the lack of awareness. Many doctors, therapists, psychiatrists, teachers, and parents don’t even know it exists. Try looking on Amazon for books related to PANDAS the illness—I’ve only found five (and two of those are children’s books). Some children never get an accurate diagnosis. Even with an accurate diagnosis, recovery isn’t a walk in the park. Dylan started antibiotics on May 12th, the day I rolled into our primary care doctor’s office with my suspicions of PANDAS. Thankfully he started improving within two weeks, and I was able to turn my attention to my own health concerns.
While I focused on saving my own life, the antibiotics worked their magic. Within 10 days he was able to occasionally skip his compulsive nightly shower. By mid-August I felt like the scales were tipping with regards to his mood. Lightheartedness found its way back to my son. Last winter and spring, his mood was very heavy, all the time. There was no joking with him, he no longer smiled or laughed with ease. It was an incredibly difficult time for all of us. Cooper lost his buddy. We were all targets of Dylan’s frustrations and upsets, but he turned his wrath on himself more than any of us. Again, heartbreaking.
Spending so much time together during the summer will test the strongest of sibling bonds, never mind when PANDAS is part of the equation. As summer vacation drew to a close, I could feel Dylan’s anxiety increase. School started on September 5th, Dylan’s 11th birthday, and although I was grateful for a bit of quiet on the home front, I too was nervous about Dylan’s return to school. Spring 2017 had been a nightmare for us, the most challenged I’ve ever been as a parent and he’s ever been as a child and student. With strep antibodies attacking his brain, even the most basic academic tasks were difficult to complete. For the first few days of school, I anxiously awaited news from Dylan’s day. I can imagine the fear and anxiety he must have felt. Would it be like it was in the spring? Or had things truly changed over the summer months? When my boys arrived home each day I was greeted with smiles. As they played afterschool I kept listening for sounds of arguing or upset. Those sounds didn’t come. What I heard instead was JOY. It wasn’t until joy returned to our household that I realized it had been gone.
In September and October we settled into a familiar routine. Every morning Dylan took his vitamins and probiotics, every night he took his antibiotics and anti-inflammatory meds. Every three weeks I went to Dana Farber for chemotherapy infusions. We knew what to expect, at least until the end of October. November would bring surgery, pathology reports, and plans for next steps. But in September and October our lives were stable, and for that we were all grateful.
On October 25th, I went for my final pre-surgery chemo. November 1st brought my follow-up bloodwork, mammogram, ultrasound, echocardiogram and visits with my oncologist and surgeon. Mid-to late November would bring with it surgery and recovery. We were all on edge about what was to come. Right around Halloween I noticed a change in Dylan’s temperament. In PANDAS speak we call such regressions or backslides “flares.” Was it the extra sugar from Halloween candy that triggered it? Was it anxiety over my upcoming surgery? Or was something else at play? With so many stressors in our lives this year, it’s been tricky to know exactly what’s causing what. At some point this fall, my children lost all patience with each other. Was it gradual or did it have a start date? Is it because I tried to change the fish oil gummies on them, and they didn’t like the taste so they stopped taking them? Could that be the reason they were fed up with each other? In the haze of my own medical journey, I lost track of cause and effect journaling. By early December it was clear that a storm was a-brewing, I just wasn’t sure what.
Last Tuesday afternoon I picked the kids up from school. Cooper and I had a date for a blood draw. When someone in the family suffers from PANDAS, it’s important to check all the other family members (and the dog, if you have one) to see if anyone is a strep carrier. My doctor gave us lab requests for this on June 12, the day before I received a cancer diagnosis. It took me until December 12th to complete the task. On Tuesday evening Jerry and Cooper had a date to get our Christmas tree. That’s when the storm hit. After 3 ½ weeks of successful surgical healing and no issues, I spent the evening in the Brigham and Women’s Urgent Care. The diagnosis was cellulitis (an under the skin infection) in my breast. With some IV antibiotics in my system and a 10-day prescription for some MRSA-fighting meds, I headed home. Tree procurement was postponed to Wednesday night.
This past week has been full of steps forward and steps back. I would seem to be healing from my infection, and then it would flare up again, red and warm to the touch. On Thursday Dylan and I had our first appointment with a new therapist that’s trained in ERP (Exposure and Response Prevention), a necessary component to healing from OCD. Cooper came home from school on Friday in tears, sad because his stomach had bothered him throughout the day and he had spent a chunk of time in the nurse’s office. Jerry and the boys saw the new Star Wars movie on Saturday afternoon. Saturday night we finished decorating our tree. As Dylan hung the various ornaments he had made for us throughout the years, he looked sad. I pulled him aside and asked what was up. My sensitive, thoughtful 11 year old son started crying and told me that seeing all the ornaments from when he was younger makes him think he was so much happier then than he is now. I hugged him and we cried together.
Sunday brought more ups and downs. The kids each had a school friend over, and we hosted “Little Dude-fest” here. They had epic light saber battles, video game showdowns, and sledding adventures. Despite all the fun times, Dylan’s PANDAS was flaring. By Sunday evening I was exhausted and depleted from my attempts to buffer Dylan from the world of upset and frustration. I had a 9am Monday appointment with our primary care doctor, to follow up on our families’ myriad medical mysteries. I spent Sunday night reading a guidebook for PANDAS, making notes, and preparing for our doctor visit. Desperate for relief from his symptoms, I started Dylan on CBD oil Sunday night before bed. It’s the same oil that my naturopathic doctor prescribed to me for cancer treatment.
I had planned to go to the doctor by myself, but when I woke the kids on Monday morning the first words out of Cooper’s mouth were “my stomach hurts.” In January 2016, Dylan had a strep infection that went undiagnosed because it presented as severe stomach pains. He never had a sore throat or a fever, and it took me a week before I brought him to the urgent care. That may have been the infection that tipped the scales in the favor of PANDAS. I may never know. But I know now that strep can be asymptomatic and can present as just stomach pains, so I opted to bring both kids with me to the doctor visit. You know things are rough when the family member facing aggressive cancer and battling a post-surgery cellulitis infection is the “easy” case.
The results from my and Cooper’s bloodwork had come back. I tested negative for strep antibodies, but Cooper’s titers were in the 750 range (200 and under is normal). No wonder the kids have been at each other’s throats—Cooper is literally the trigger for Dylan’s PANDAS flare. Would Cooper’s antibodies have been that high back in June? I don’t know. Is he a strep carrier or just fighting an active infection? I don’t yet know. Based on his symptoms, we’re treating it as an active infection. Cooper started a 10-day course of antibiotics yesterday. After dropping the kids at home, I zipped up to Boston to have my cellulitis infection checked. Despite a rocky start, things improved over the weekend when I added in my natural remedies to help fight the infection. A little high-powered antibiotic here, a little Echinacea and turmeric there, a lot of coconut oil spread on my skin. I am healing.
I returned home yesterday afternoon feeling tired and raw. I was NOT looking forward to the boys’ constant bickering. I’m grateful to report that we had an incredibly peaceful afternoon and evening. The kids built a box fort above the garage. Cooper kept calling himself “a carrier.” They laughed and played and supported each other, like the good old days. Maybe they were peaceful because they could tell I was hanging by my last thread, maybe the CBD oil had helped Dylan’s nervous system calm down, or maybe it was the realization of how integral we all are to each other’s health. May we have more peaceful energy in the days and weeks to come.
Wow, Danielle! What an ordeal your family has been going through. I wish you ALL a swift return to health and more and more moments of joy!
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Thank you Monica. It’s been quite a year. I’ve never been so eager for one year to change to the next!