In this day of virtually unlimited access to information, it is natural for patients and parents of a child with a rare disease such as mito — or a complex set of symptoms that looks like mito — to research the disease, potential symptoms and typical course of progression. High-quality information generally may be found on disease specific patient advocacy websites as well as PubMed, an online repository for medical literature run by the National Institutes of Health. By reading the literature, prudently searching the Internet and connecting with other families affected by mito, patients and parents often develop a very sophisticated and complete knowledge of the disease.
From time to time, patients and families might find information relating to diagnosis, testing and/or treatment that they wish to share with medical professionals. Such information sometimes can change the course of treatment and might prove highly valuable to the medical team, especially if the physician is intellectually curious about the case or otherwise open to parental insights.
It is important to recognize, however, that not all medical professionals are equally open to the participation of the parents or patient in the diagnostic process. One of the biggest red flags for allegations of Munchausen’s or Medical Child Abuse is a person who “exhibits a higher than average degree of medical savvy.” Laura Criddle, “Monsters In The Closet: Munchausen Syndrome by Proxy,” Critical Care Nurse, Vol. 30, No. 6 at 50, December 2010. Thus, balancing parental insights and the sharing of potentially helpful and relevant information with concerns over appearing “too knowledgeable” and “overly interested” in the diagnostic or treatment decision-making process is crucial.
The real danger lies in approaching a doctor with “your research” rather than collaborating with them to try and find a path forward. Running such information past the PCP first is always a good idea if time permits; you may then present the new research or treatment option to the specialist as something that arose out of discussions with the PCP as opposed to being solely based on your own findings. This approach allows the PCP to act and appear as the quarterback time and again, especially in the eyes of the specialist. If you are seeking to present new treatment information or research to a physician with whom you do not have a preexisting relationship, such as in a hospital setting, it is still best to get the PCP or trusted specialist on board first before discussing with the hospitalist.
Despite these hurdles of perception and logistics, it is still crucial for patients and families to trust their gut instincts and find a way to have new information heard by the right physicians. Patients and family members often have course-correcting insights as they are so focused on a single patient and know the symptoms and history of that patient so well. Try to refrain from taking credit for any helpful findings, however, as that will only add to “attention-seeking” concerns that could prompt Medical Child Abuse allegations. Rather, focus on moving the proverbial diagnosis/treatment ball forward while giving all of the credit to the physicians involved in the patient’s care.