When the Wheels Came Off: A Parent’s Journey Through Pediatric Chronic Pain
This post is written from the perspective of a parent with a child living with chronic pain.
I live in Aspen, Colorado, population 7,000. We have the country’s second-most billionaires per capita, dignitaries, celebrities, and, of course, influencers. We have a physicist institute, a music festival, a jazz festival, world-class food and skiing, and even an annual health forum.
What we don’t have is support for children in mental distress beyond practical therapy. There are a handful of therapists and one pediatric psychologist with a reputation for over-prescribing. Our school mental health non-profit suggests, and provides, a few free therapy sessions, but beyond that, you get a “there, there” and a tap on the head. We also have a mediocre suicide hotline.
I thought I lived in the perfect hamlet until the wheels came flying off in 2017.
At the age of 10, my son was prescribed montelukast (Singulair) for his allergies. What was not disclosed to me by the prescribing doctor was that montelukast has resulted in “completed suicides in teens.” So, I was not prepared for the neuropsychological fallout we were about to experience.
As soon as my son took montelukast, his demeanor changed. He attempted suicide twice, and we immediately stopped the drug. He was out of his mind with acute anxiety and separation anxiety, and was an emotional puddle. He subsequently tested positive for strep four times in three months. Then came the chronic illnesses. He lost the passion for things he loved. Longtime friends and teammates started making fun of him for being sick and missing school. Once a multi-sport kid who always wore a smile and never met a stranger,he was now weak, listless, and withdrawn. In short, he had lost his “mojo.”
I understand that this event coincided with normal preteen mental development and adolescence, so it was challenging to separate what behavior was normal developmental behavior and what was fallout from montelukast. In my heart of hearts, I 100% believe it was the montelukast.
We immediately started therapy, but as the sickness worsened, the pain and insomnia kicked in. The pediatrician diagnosed him with depression, and my son began taking antidepressants.
He developed chronic stomach issues, but the GI specialist in Denver could not find anything physically wrong. His foot would hurt, but then he would run on it. It was like Whac-a-Mole addressing the variety of his malaises. Most doctors suggested therapy, citing Generalized Anxiety Disorder, but therapy wasn’t helping. I maxed the bandwidth of what traditional practitioners in my area could do to help.
I called the Mayo Clinic but was turned away because the condition was psychological. I went to a brain reintegration doctor for therapy and acupuncture. I got some direction from them, but nothing that moved the needle. A doctor friend of mine suggested my son’s condition might be “somatic.” That word resonated.
A psychiatrist in LA checked my son’s titers and believed the pain was caused by post-streptococcal syndrome. Steroids were suggested to knock out any streptococcal viruses. I hesitated, then opted out.
From 2017 to 2020, there were small successes. I call them “glimmers,” but they came fewer and farther between. I kept searching for help while parenting in triage mode. My son spent hours in his room and the bath. The bullying was increasing. The pain was increasing. School refusal became my daily nemesis. And, oh, the tears. Both of us. The school threatened (illegally) to disenroll him because he missed so much school. Something had to give.
After consulting with two pediatricians, two psychiatrists, three school therapists, four regular therapists, the school mental health program, The Mayo Clinic, a stomach specialist, a brain reintegration practitioner, an EMDR therapist, a handful of naturopaths, an acupuncturist, a chiropractor, friends, other parents, relatives, and anyone who would listen, I still had no leads. So, I stopped talking about it because there was nothing anyone could do but shrug their shoulders and try to empathize, but they could only sympathize.
How could a town so rich in intellectual and financial resources be so illiterate in Pediatric mental health?
Then, out of the blue, my friend told me about an NPR podcast about kids with chronic pain. I could not download it fast enough. Here, I learned about “Amplified Pain Syndrome.” The podcast hit the nail on the head.
I immediately got a referral for the pain management program at Children’s Hospital in Denver, and I dove into researching everything related to that term.
Concurrently, I had a Neuropsychological Evaluation done by a doctor visiting from LA, because, again, there are few resources where I live. My son was diagnosed with ADHD, something he never showed signs of before, but again, it was a lead. The neuropsychologist suggested the book, Pain in Children & Young Adults: The Journey Back to Normal.
As I devoured the book, the pain clinic in Denver told me there was a three-month wait for an appointment. Ugh. Desperate, I picked up the phone and called the book’s authors on pain in children, Drs. Paul and Lonnie Zeltzer. A few weeks later, I got an appointment at Whole Child LA in Los Angeles. I would have travelled to Mars if necessary.
To give you some context, this was February 2020, five weeks before the world stopped for COVID.
We met with the doctors at WCLA. My son was diagnosed with PANDAS. They suggested he get cognitive behavior therapy (which we kind of were doing) and change his antidepressants. They also prescribed meds for pain. It was a relief to consult with someone familiar with his condition. And it was sadly relieving to confirm the source of the pain.
Working with WCLA opened doors for us. But not in the ways I expected. The pain meds didn’t help. We continued with CBT therapy, which was short-lived due to the onset of the quarantine and the decline of engagement from my son. What we gained was a referral to a children’s therapist who had experience with children in chronic pain (to help me) and a behavioral therapist to work closely with my son to develop a daily routine. These two practitioners got us through the next month with an elevated level of therapeutic and mental support.
Then the quarantine hit. Coping with everyday issues became more of a challenge. The lack of structure and social interaction was very hard on my son. Communication with peers was limited to texts, FaceTime, and the dreaded social media. We worked with our behavioral therapist daily, trying to figure out a structure that worked, but he still struggled. We fine-tuned daily schedules/charts which rotated screen/non-screen/indoor/outdoor/chores/ schoolwork/sleep, etc. It was an incentive-based system where my son earned points towards prizes. It worked for a while.
I hired a tutor to help my son cope with the ramshackle online school curriculum. The tutor was a longtime friend who coincidentally had a son with similar struggles. She was able to gently support me.
Another friend, frustrated with my “bratty son” and his behavior, angrily told me I should send my son “away.” I almost laughed at her and asked her where “away” was? Honestly, I knew kids went away for “treatment,” but mostly for substance abuse or juvenile delinquency, which thankfully was not our issue. Should I dial 1-800-AWAY?
Shortly after, my son received a series of vicious bullying texts. He slipped deeper into a world so dark and foreign to me that I knew he needed an even higher level of care. His sleep was erratic, and he was deteriorating quickly. The LA therapist suggested wilderness therapy, which turned out to be “away.” The wilderness therapist had my kid’s number in one conversation. Even better, the wilderness therapist helped me with the verbiage to make my son go to treatment willingly. We hopped in the car with a pillow and the dog, and hightailed it to Idaho. My son did not speak of pain since the day he got to wilderness therapy.
It was through the therapists recommended by WCLA that I found wilderness therapy and, subsequently, a therapeutic boarding school where my son continued treatment for another ten months.
My son’s tutor introduced me to a group of moms with kids in varying treatment forms. Here, I found support from moms in similar situations. We spoke freely about our wins and challenges with tears, laughs, and wine. I still meet with them often because I find the support and connection invaluable.
Today, my son is doing well. He still struggles socially, and I believe he still somatizes some of his stress. He is in traditional therapy (locally), and I have a coach who helps me separate “red flag behavior” from normal adolescent behavior. I often wonder if my son still has PANDAS or if it “went away.” I would give a kidney to reset his neurological system from the trauma caused by the montelukast.
When I became a mom, I was told to buckle my seatbelt. No one told me I needed a five-point harness.
