Having a child with a complex illness can be especially challenging for parents because of differing opinions among providers about causes, symptoms and treatments for disorders such as long COVID and chronic Lyme. “A common theme I would hear from parents is that they really had to push their providers to consider Lyme. Sometimes they even had to beg for testing to be done because it just wasn't considered a possibility,” says Dr. Charlotte Mao, a pediatric infectious disease physician working with leading foundations in the Lyme disease and associated infections arena. Adding to challenge is that kids often have trouble explaining their symptoms, says Dr. Lael Yonker, a pediatric pulmonologist at Massachusetts General Hospital. “I think takes a lot of patience by the pediatrician, listening carefully to the parents and patient, and really trying to dig into what their symptoms actually mean.” Join host Raven Baxter of The Cohen Center for Recovery from Complex Chronic Illnesses at Mount Sinai as she draws out valuable guidance on how providers can work effectively with both children and parents during a journey laden with uncertainty. Key tips include having humility for the limits of your own knowledge, keeping an open mind for unexpected possibilities and having respect for what patients know about their own body. Don’t miss this wisdom drop from these deeply experienced pediatricians and researchers as our series on Post-Acute Infection Syndromes continues.

Mentioned in this episode:

Mount Sinai Health System

Steven & Alexandra Cohen Foundation

“Helping patients with complex illnesses is a lot like rock climbing. You're looking for toe holds and finger grips that you can use to get from where you are to where this patient wants to be,” says Dr. Leo Galland, an internist and author who specializes in undiagnosed or difficult to treat illnesses. His fellow guest on this episode of Raise the Line, co-founder of the California Center for Functional Medicine Dr. Sunjya Schweig, agrees and says figuring out that next anchor point depends on taking the time to learn about all aspects of a patient’s life and lifestyle, and building a cooperative relationship with them. “Listening is the first therapeutic step,” he tells host Raven Baxter of The Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) at Mount Sinai. In this deeply informative conversation, both experts underscore that working in this realm requires moving past differential diagnosis and symptom management and persisting in the search for root causes. “You have to embrace the complexity and the individuality of illness. Thinking for yourself and always questioning is really important and, you know, being a real pain in the butt kind of person is what you've got to be,” adds Galland. This special episode is packed with valuable insights on the limits of testing, the role of disease triggers and mediators, the power of lifestyle changes and much more as our series on Post-Acute Infection Syndromes continues.

Mentioned in this episode:

Mount Sinai Health System

Steven & Alexandra Cohen Foundation

One key theme in this episode of Raise the Line is that attention to details matters for both patients with post-acute infection syndromes and the clinicians helping them as they grapple with often debilitating symptoms caused by dysautonomia, cardiac complications and other disorders. For patients, it’s about paying close attention to their bodies and diet, and being intentional about their use of energy. For providers, it’s listening very carefully to patients as they describe their fatigue, pain, lightheadedness and other symptoms and keeping up with the latest research on treatments so there are options to offer if there’s little or no progress being made in physical therapy, which is sometimes the case. “Don't just assume therapy is gonna go smooth. It rarely goes smooth. So, have an answer for the patient who says, ‘I'm not feeling better, what should I try next,’” says Dr. David Putrino, director of the Cohen Center for Recovery from Complex Chronic Illnesses (CoRE) at Mount Sinai. It’s also important to set expectations for patients who may think a few weeks of PT will resolve their issues, as is often the case with recovery from an injury. “What we're looking to do is reduce the number of flare-ups that happen, reduce the severity of those flare-ups, and ideally reach a point of symptom stability,” says Dr. Jenna Tosto, a leading expert in neurophysiological rehabilitation at Mount Sinai. To help patients understand the amount of progress happening, if any, host Dr. Raven Baxter, a long COVID patient herself, says keeping a daily journal and using fitness trackers can reveal important details. This expansive conversation includes valuable insights for patients and providers alike on breathwork, emotional regulation and other techniques to try during the search for improvement and recovery in complex chronic illnesses.

Mentioned in this episode:

Mount Sinai Health System

Steven & Alexandra Cohen Foundation