At GetzWell, we know that wellness involves body, mind, and emotional landscape. All three of these are inseparable and intertwined. Mental and emotional symptoms can signal that the body is suffering an imbalance or illness and it’s not just “in your head.”
Sometimes parents contact us after having pursued, to no avail, every other medical option to ease their child’s distress. Certain families have told us they visited 10 or more other doctors and specialists only to be informed that labs and other studies are “normal” and the best option is psychiatric medications.
This was exactly the situation for 15 year old Stacy when her parents contacted GetzWell, hoping for answers. Stacy was suffering from symptoms such as anxiety, obsessions and compulsions (OCD), rage and also physical complaints like headaches, acne and bloating, and she “had been stuck on the couch for months.” No one had been able to figure out why this was happening or how to help her.
Let’s Learn More About Stacy
Stacy had always been an intense kid, but at around 11 or 12 years old, she began to have bouts of rage and became very aggressive with her younger brother. At the same time, her stomach was bloated, she felt frequently nauseated and had loose, light colored or yellow stools. She also complained she “always” had a stuffy nose. She saw an Ear Nose and Throat (ENT) specialist who treated her with antibiotics–twice–even though she had none of the telltale signs of a sinus infection (fever, discomfort with chewing, or pain over her sinus areas) and the antibiotics didn’t help. The bloating, nausea and loose stools continued and her behavior intensified, escalating to the point that her parents had to restrain her. They consulted a psychiatrist who advised putting her on drugs to help stabilize her mood. Stacy’s parents declined because she was so young and they were concerned about the possible ill effects of psychiatric medication on her developing brain.
After a year of numerous visits to therapists and psychiatrists, all of whom either declined to help because they lacked the tools or wanted to medicate Stacy, finally labs were ordered to see if there were any clues and Stacy was diagnosed with celiac disease. At that point they began to remove gluten from her diet and her mood, rages and bloating improved dramatically for over a year.
Little by little, though, Stacy’s behavior began to deteriorate again and the bloating returned, this time so much so that her belly looked “pregnant,” and she suffered from alternating bouts of constipation and diarrhea, along with nausea, fatigue, muscle aches, anxiety, OCD, rages, insomnia, dizziness, and headaches. Her parents also noticed her pupils were extremely dilated at random times, sometimes accompanied by facial flushing.
Over the next 3 or 4 months, Stacy’s behavior became even more extreme. She fought with her brother constantly. She was convinced that he repeatedly contaminated parts of their home. She also argued with her parents about almost every request they made. Routinely at night she would demand that her mother stay with her so she could fall asleep, but then would talk nonstop and irrationally, unable to fall asleep for hours. She often became increasingly physically aggressive with her mother. There were times her mother had to keep Stacy behind a locked door for over an hour until she calmed down. Needless to say, school became almost untenable and this situation was destroying their family.
Other Specialists Couldn’t Solve the Problem
Stacy’s parents took her to the following specialists and were unable to get meaningful answers or relief:
- Gastroenterologist: Provided no real answers but wanted to scope from above and below and said her symptoms were unlikely to be attributable to small intestinal bacterial overgrowth (SIBO).
- Psychiatrist: Suggested mood stabilizing drugs or SSRI medication to address the OCD/anxiety/rage.
- Ear Nose and Throat Specialist: Had tried treating her chronically runny nose with nasal steroids and antibiotics but those medications hadn’t helped.
- Neurologist: Referred them back to the psychiatrist because her neurological exam was normal and her complaints were “more psychiatric than neurologic.” Furthermore, Stacy didn’t meet the narrow criteria for PANS/PANDAS (Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) or a related condition known as Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS)), so the Stanford PANDAS clinic that addresses Immune-Behavior Health denied her referral.
Dr. Getzelman’s Working Diagnosis
When Stacy’s parents contacted GetzWell, they were sleep deprived and desperate. Everyone walked on eggshells around Stacy and her parents were concerned about her ability to complete her academic year. Also, Stacy was supposed to go to Alaska on a 3-week trekking trip they had signed her up for months earlier, but it was looking like they would need to cancel those plans.
I suspected that Stacy was suffering from an issue in her gut, likely in her small intestine, and proceeded to order an “organic acid test” (OAT) which measures volatile organic compounds coming from gut microbes and offers a metabolic snapshot of sorts, among other things.
While we waited for the results, Stacy’s parents agreed to start her on ibuprofen, a tool often used in the treatment of PANDAS patients to blunt symptoms of brain inflammation. For a week, Stacy was better, more cooperative, flexible and agreeable but after about 6 days of ibuprofen, she began to rage intermittently, became oppositional and irrational again, and her insomnia returned worse than ever. At this point Stacy was incredibly debilitated and unable to do almost anything–her parents feared her brain would never recover! I reassured them that it likely would, but warned that healing would take weeks or months and be very gradual. It was also possible there would be temporary backsliding at times before Stacy’s best self emerged. With this in mind, over the remaining days that it took for the OAT results, Stacy’s parents allowed lots of couch time and continued to treat her with kid gloves so as not to provoke outbursts or aggression.
Organic Acid Testing Is A Vital Tool
Stacy’s OAT results in fact pointed to a severe yeast and mold overgrowth in her small intestine, what’s known as small intestinal fungal overgrowth, or SIFO.
I prescribed a treatment protocol that involved an antifungal regimen, binders for mold toxins (like clay and charcoal), botanicals for healing and sealing Stacy’s gut, and a professional mold investigation of the family’s home.
Within 5 days of starting an antifungal protocol, Stacy was no longer experiencing headaches, her “pregnancy belly” was beginning to shrink, her behavior was remarkably more predictable and agreeable, and her anxiety was significantly decreased. Her mom declared, “She has said ‘You’re right, Mom’ more in the last 3 days than in the last 3 months!” Stacy was also taking long walks and showing a commitment to go to Alaska on the trekking trip.
Within less than a week, it was quite clear that SIFO was what had been driving many of the symptoms and unrelenting challenges this family had been experiencing.
Getting to The Root Takes a Sherlock Holmes Approach
It can be both scary and exhausting to have a child who is unwell for reasons no doctor has been able to diagnose. If you identify with this story personally or have a child whose illness no one can figure out, give us a call. I love doing the “Sherlock Holmes” type investigative work to get to the root causes of dysfunction and illness for kids and adults.
And stay tuned for Part Two where I will share more details of Stacy’s recovery!