“Oh, but he has always been like that”. Often, that is what parents hear from dismissive providers or family members when they start discussing whether their child’s behaviors may be due to PANS/PANDAS. So, we ask in return, “But has he? Or, did we just make assumptions and chalk up new behaviors as resulting from big life changes as part of being a 2 or 3-year-old?”
This story is a perfect example of how this happens. This little boy was actually neither overly upset about the birth of his sister nor having an exceptionally horrible Terrible Twos; rather, he was suffering from PANS/PANDAS. When did providers start trying to normalize a child being absolutely miserable? We must always ask, “Why?” and keep digging for answers because there may be a way to help that kiddo. Thank goodness this family did just that. We are so grateful this family shared their story with our community.
SO MUCH MORE THAN THE TERRIBLE TWOS
In the summer of 2020, we brought our new daughter home from the hospital. Within days, her 23-month-old brother, Luke, took a turn for the worse. Suddenly he was upset all the time—He didn’t like the way I was standing or the way I said things. He couldn’t handle the high-pitched newborn cries of his sister, or even being handed the “wrong” sippy cup. Any one of these things would send him into an hour-long meltdown of blood-curdling screams. He wouldn’t accept any comfort, so all we could do was wait it out. Before we knew it, he was having 4-5 hour-long tantrums each day. Even in between the tantrums, he wasn’t happy then either. He was constantly whining about something that wasn’t “right” or begging us to redo something. When we complained to friends and family members about these strange behaviors, we were constantly reassured that toddlers can be very rigid and they all love routine. Of course, we’d also been warned during my pregnancy with Luke’s little sister to be prepared for behavior regression from Luke when his baby sister was brought home.
I thought to myself many times a day “I guess this is why they call it the terrible twos!” But then I would wonder how the human race continued, or how anyone would have a second or third child when THIS is what they had gone through?! At our infant’s well-child check-ups throughout the year, our pediatrician would ask if I had any questions. I’d always say, “My only question is about Luke… he’s had a complete personality change. Is that normal?!” She assured me that yes, that was normal—his whole world had been turned upside down. And big meltdowns were normal for two-year-olds. They often seem to drag on forever.
As the weeks and months went by, things only got worse. Around six months, our daughter started sleeping through the night (thank God for sleep training!). But at the same time, Luke started waking up every night. He would wake up screaming at midnight, mid-tantrum. It was the same blood-curdling scream he’d do in the daytime, with the same look of terror in his eyes. He wanted me in his room with him, but he did NOT want to be touched, so I’d lay on the edge of his bed with my arms down at my sides and listen to him scream for an hour or more until he’d finally wear himself out. I’d breathe a sigh of relief and go back to bed. The pediatrician said night terrors were common in toddlers.
Each morning he’d wake up in a full-on meltdown yet again. He’d want to be comforted with breastmilk so I’d nurse him—the only time he’d allow my touch. But then his sister would wake up and need her morning milk too. They both desperately needed 100% of my attention. Hubby would say “I can’t handle this” and hop in the shower. I would beg and cry for him to take a sick day, and stay home to help. The mornings were the worst but the rest of the day wasn’t much better. Luke had become impulsive and aggressive to everyone, including the baby. If I would leave him for a moment to run to the restroom, he would step on her or scratch her until she cried. So every time I had to pee, I’d lay her on the bathroom floor next to me, and lock Luke out while he screamed and pounded on the door. Every moment felt like an emergency. If you could die of stress, I absolutely would have. I wished I hadn’t quit my job to stay home with the kids. I looked at jobs that would pay me enough to cover daycare for two kids. But I couldn’t imagine Luke in a daycare. He’d surely be asked to leave.
Things continued on like this for years. I’d dread waking up each morning and living the same hell over & over again. I hated my life. Luke clearly hated life. No one was happy. At Luke’s 3-year-old check-up, his pediatrician witnessed one of his rage-filled meltdowns and suggested I take him to a therapist to get him evaluated. When we saw a pediatric therapist, Luke was diagnosed with OCD, severe anxiety, and disruptive behavioral disorder. We started twice-weekly Parent-Child Interaction Therapy (PCIT) which was helpful, but only slightly.
At the same time, the Covid pandemic had begun, so we were now completely isolated. What little help and distraction we had before, was now completely gone. Our stress, confusion, and fear were compounded. As we desperately tried to help Luke overcome his debilitating OCD, our research showed that OCD in toddlers was far from common. We found a doctor who would do some exploratory testing on Luke, and the test results showed he had overgrowths of both C-Diff and candida. The doctor thought this extreme dysbiosis in his gut could be the cause of his mental health issues, so she prescribed Metronidazole and Nystatin. Shockingly, after 10 days of these medications, Luke was healthier and happier than he’d been in over a year! We enjoyed our sweet, happy boy all summer long but by the fall all of his symptoms had come back.
After much more research, crying, out-of-network doctors, and blood tests, we finally figured out that Luke had been born with Lyme disease & other tick-borne infections. Who even knew you could be born with Lyme?! We then learned about something called PANS/PANDAS and began further research. We watched the documentary “My Kid Is Not Crazy” and thought “HOLY SH*T.” We knew that was what Luke had.
Thanks to the Iowa PANS/PANDAS Facebook group and the help of my caring sister, we found a functional medicine provider who treated PANS & PANDAS kids in Iowa. She even accepted our insurance! She was the only provider we’d encountered who really cared. She was such a light in the dark hellscape of our life. Working with her as well as a Lyme-literate MD out of state, we treated Luke’s Lyme disease and PANS simultaneously. We spent all of our money, all of our time, and all of our energy on treatments. Luke was now taking 10+ medications and many supplements each day, on an hourly schedule… so leaving the house was nearly impossible. He kept getting sent home from school, so we decided to homeschool. We became worried about mold, dust, and other environmental irritants so we moved out of the custom-built home that we loved, to see if Luke could be happier somewhere else.
Every step of our healing journey brought back pieces of our happy Luke we’d been missing—Low Dose Naltrexone got rid of his OCD, antibiotics helped his tics, GABA supplements improved his anxiety, and melatonin helped us all get some sleep. After a tonsillectomy and months of medications, supplements, detox, binders, anti-parasitics, anti-virals, and more… we got our baby back fully! We had missed him so much. But every time his little sister brought home a cold, or Luke would get a canker sore, his PANS symptoms would flare up again in full force. We fought the flares back-and-forth, back-and-forth for over a year. But still, he was flaring more often than not. A tiny virus would cause a month or more of PANS symptoms. He was sick of being anxious, angry, and out of control. He wanted to live a normal life. His bad moods and uncontrollable behavior were making us all miserable. He was so unhappy he’d beg us to end his life. He’d say “All I do is try new medications every week, but I’m still so mad and so sad. I can’t do this anymore. I really don’t want to live.”
At this point, we were ready to sell our souls if that’s what it took to get better. Or more realistically, sell our house or cars to pay for IVIG if needed. Our guts were telling us that IVIG was the next step… it was the only thing we hadn’t tried. We decided to pay out of pocket and fight with insurance afterward because we couldn’t make Luke wait months longer. Thankfully, IVIG is priced by weight and our not-even-six-year-old only needed $16,000 worth of IVIG—not a bad deal, compared to the tens of thousands we’d already spent in the previous couple of years!
At present, we’re writing our appeal to insurance, asking for them to refund our IVIG costs. But either way… IVIG WORKED. We’re only two months out from IVIG, but Luke is healthier and happier than he’s been in 4 years. The flares are consistently getting shorter and less intense, just as we’d been told they would. He’s had more “good days” in a row in the past month than he’s had in years. So we pray every day that his progress “sticks” and we appreciate every good day and every sweet moment with bated breath.
Gabriella True
