When Inflammation Is Dismissed: B’s Battle with PANS and Tick-Borne Co-Infections

August 2019, B is 12 years old and all of his dreams came true, he was playing more baseball that he had ever played before, he made the honor roll at school, he had the best week of his life playing baseball in Cooperstown with an amazing group of kids, he had friends, he was gaining a huge amount of independence, he was maturing right before my eyes, and he was happy. September came, and here we were, a new school, more independence, higher expectations…but we were ready!! Until we weren’t.

By October, he had changed. He woke up one morning and was asking the same question over and over. He kept forgetting what we were talking about. He was used to staying home alone now and then, but would text me asking where I was because he forgot we had left the house. He would tell us the same story over and over again. We figured it was his anxiety and just kept answering his questions. He was in constant need of predictive dialect.

His personality was gone; he was angry, depressed, and withdrawn. We met with his pediatrician, and he started him on an antidepressant and adjusted his ADHD meds, and attributed it all to the transition to middle school, puberty, and losing his great-grandfather, whom he was very close to.

He turned 13 in October, and we almost couldn’t celebrate because we didn’t know when he would fall into a fit of rage. In November, he was downright nasty. Screaming at us, angry, mean – ugh, teenagers, am I right? He was withdrawn and didn’t want to do anything; he was in constant pain. His knees and back hurt all the time. He was up all night. But he was growing rapidly, so it was all normal, right? Wrong!

Then I noticed he was stumbling; he was holding on to furniture or the wall to walk from one room to another, and he was squinting a lot. When I had to hold him up to walk, I took him back to the pediatrician. His main pediatrician was out that day, and we saw another at the same practice. She sent him to the emergency room. After many tests with no certain answer, he was transported via ambulance to Tufts Hospital in Boston. The neurologist he saw there told us it was anxiety/growing pains and sent us home. Period.

Not a great answer for me, so I called to schedule an appointment with a neurologist from Boston Children’s Hospital. I mean, they are the best in the world, supposedly. The only available appointment was that Friday with a drive that was 3 hrs away. I took the appointment and got a hotel room for the night with my 13-year-old angry son, who couldn’t walk, see, and was now slurring his words and physically aggressive. After hours of fighting to get B into the building, she told me we needed a psychiatrist, not a neurologist, and sent him to the ER at BCH for a psych eval. Hours later, and I mean HOURS later, after sedation to get an MRI, and blood tests, another sedation to get a spinal tap. He was admitted for cerebellar ataxia with inflammation in the cerebellum.

His brain was so swollen that it far exceeded the limits to be considered a TBI (traumatic brain injury), causing ataxia, vision problems, and slurred speech. When asked about the anger, rage, depression, OCD, inability to sleep, etc. They said they would send a psychiatrist in to evaluate him. At this point, I am petrified because he has said he wanted to die more times than any parent should ever have to hear it, and I didn’t want him to go to a psych ward. This isn’t my child!!

He spent 5 days at Boston’s Children’s Hospital receiving IVIG treatments. We saw almost immediate improvement after the first round. After 5 doses of IVIG, he was able to come home. He still needed to be helped while walking, especially up and down stairs, etc. Upon release from the hospital, he was put on a 3-week steroid taper. They wanted to schedule a follow-up at the end of January. As I didn’t want to travel 3 hrs again, I asked if he could be seen a little closer to home, so an appointment was made at the Boston Children’s Hospital satellite in Peabody, MA.

As we tapered off the steroids, the symptoms started coming back. I kept notes, knowing we were going back to see the neurologist. By the time the appointment came around, he was right back where he had been prior to his stay in Boston. After explaining everything, she too said he needed a psychiatrist, actually, she said he needed a full psych team, and was beside herself that he wasn’t on psych meds. After explaining that this was not my son’s baseline, and asking if we were ever going to discuss the inflammation he was hospitalized for. And pleading with her, as we have seen by several doctors now, no one seems to be able to help him. She ended the appointment and accused me of doctor shopping.

I left in tears of frustration. Took a deep breath and made more phone calls. I got a neuroimmunologist at BCH to see him. They too did not have any answers as to why the symptoms were coming back. They ordered every test under the sun (so they said). We were scheduled to go back to BCH in March 2020 for sedation to get another MRI, spinal tap, blood work, ultrasounds, and X-rays. They wanted to rule out cancer, tumors, etc, and check for antibodies. I had his braces removed early so there wouldn’t be any scatter with the MRI. As the results rolled in, they didn’t have any more answers. Everything came back negative with the exception of positive for high levels of oligo bands in his spinal fluid and antibodies for pneumonia and EBV (Epstein-Barr Virus). By now, the pandemic has hit, and no one is seeing patients.

In May 2020, I met with the neuroimmunologist via telehealth. She had all the results and no answers as to why he had antibodies for EBV and pneumonia when he didn’t have any active infections in December. He also had 3 oligo bands in his spinal fluid (you should have 0). The oligo bands show some kind of active infection, typical in MS patients, but nothing in his MRI showed he would be a candidate for MS. She said to follow up in six months and that his brain just needed time to heal. I asked if it could be PANS associated with Lyme, as he was not tested for Lyme. She said absolutely not, that PANS kids don’t have this type of inflammation, and that Lyme doesn’t cause neurological problems. Knowing that Lyme can be really hard to detect, I asked if we could do a Lyme test, and she said no, Lyme can’t cause the symptoms he was presenting with.

By June, B is now the worst I have ever seen – angry, aggressive, non-compliant, has unmanageable OCD, won’t leave the house, won’t let me leave the room, has to control everything we do, cognitively regressing, he is in constant pain… he’s miserable, we all are. He wasn’t playing baseball. His only goal for the summer was to die. Things went from bad to worse as time went on. I will spare the details, but I can assure you we were all living in hell.

I called every psychiatrist/therapist in our area. No one was accepting new patients. I wasn’t convinced that this wasn’t PANS, so I joined some Facebook groups.

As I was scrolling, someone had posted a pic of their child’s back, asking if the marks looked like Bartonella. Ummmmm wait…. what now???? B has those marks on his back and his knees (remember that knee and back pain??) I assumed they were stretch marks, oh, and what the heck is Bartonella?! After hitting Google, I was convinced. Bartonella is a co-infection of Lyme. I found a highly recommended LLMD (Lyme literate doctor) and called immediately. She had a cancellation that day and no openings for another month, yep, I took it!! With the help of an amazing friend, I was able to scan all the necessary paperwork and spent almost two hours discussing everything. She, too, was convinced it was Lyme with a co-infection of Bartonella, which, after being left untreated, led to PANS.

PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response that results in inflammation in a child’s brain. In turn, the child quickly begins to exhibit life-changing symptoms such as OCD, severe restrictive eating, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more.

It all made perfect sense now. BCH does not believe in PANS/PANDAS; many mainstream physicians do not either, especially back then. At the end of July 2020, he started on two heavy antibiotics and a bunch of supplements. Two weeks in, the anger and aggression nearly stopped; he was happy again. At 9 weeks into treatment, we saw so much improvement that we were actually hopeful. We could see our B coming back to us! The memory decline and heightened anxiety were still big problems. The OCD was too, but his doctor was confident that it would get better with time. BUT, we were seeing so much improvement…he was dancing again! He couldn’t play baseball yet, but he was practicing again!! He started to enjoy many of the things he used to enjoy, he started getting out of the house again, and I had some newfound freedom too, as he wasn’t clinging to my every move! He started chatting everyone up again and using some really great language; he was reengaging with his amazingly resilient little brother, who unfortunately had to endure way too much heartache at such a young age. Getting him to school continued to be a challenge, but he was going – eventually, that is.

We continued with the medication and supplements for two years. He essentially missed the two years of middle school but transitioned back in for high school. It hasn’t been easy on him, but as always, he persevered. His treatment can be compared to that of a TBI; he has had to re-learn a lot of skills he lost. With a lot of patience and some out-of-the-box thinking, he has done really amazing. He is back out there socially, he passed all his tests on his own, he is back to singing and dancing, he never made it back to the baseball diamond as a player, but he is the best fungo hitter in the Cape Ann league and loves to help coach!

We are so grateful to the family, friends, and teachers who never wavered and have been right beside us the whole way. I can’t begin to tell you how awful it is to see your child in so much pain, anguish, and suffering. The depression ripped my heart out the most. But, we have rebuilt him and he is now better than ever. If you made it this far, thank you. If you would like to share, please do. He is one amazingly strong young man, and we love him oh so much!

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Gabriella True