Some parents of children with Lyme Disease—predominantly mothers—face false charges of medical child abuse. How can we support and protect families who find themselves up against the law?
Here at Project Lyme, we listen closely to your stories about what it means to live with your condition; your words give our community strength, purpose, and hope. But what about those who are too young to speak for themselves? How can we let the voices of children with Lyme be heard? And what are the best ways for parents to advocate for their care?
Finding the right course of action for a child with a disease known as “the great imitator,” given its ability to mimic so many other health conditions, is, for many parents, a long and drawn-out process—one that may begin in the pediatrician’s office, lead to follow-up appointments with a wide range of specialists, and even land them in the hospital. Since Lyme manages to occur or recur without much rhyme or reason, leap from one body part to another, and present with myriad co-infections, an accurate diagnosis can be hard to come by. To make matters worse, even when doctors suspect Lyme, existing tests rely upon an antibody response to the bacteria, missing approximately half of actual cases. And if this elusive criteria for identifying Lyme is not frustrating enough, different labs also perform different diagnostics making it not uncommon to receive inconsistent and/or false-negative results.
For those children with a known tick-bite, a tell-tale bullseye rash, and early treatment, recovery from Lyme can be straightforward. However, as few as 1 in 5 children with Lyme disease can actually recall a tick bite. Delays in diagnosis and treatment can lead to a disseminated infection that can reach the central nervous system, heart, gastrointestinal system, and joints. Late-stage Lyme can also impact mitochondrial and autonomic function, leading to a constellation of multisystemic symptoms. A parent who has made an investment in performing the necessary research, attending doctor’s appointments, and keeping close track of a child’s symptoms and/or treatments could be duly commended for becoming conversant in a disease that remains so largely misunderstood. But sometimes a medical system that’s designed to help families with Lyme can do more harm than good.
Unfortunately, our medical system tends to suspect anyone who is willing to jump through hoops to find answers as to what is wrong with his/her child. So, family, schools, and medical professionals suspect anyone, and particularly mothers who won’t just sit back and do nothing, as ‘trouble makers.’
Accused Mother (Anonymous, Project Lyme community member)
Controversies regarding both testing and the proper scope of Lyme treatment leave parents—almost exclusively mothers—vulnerable to second-guessing by doctors, teachers, and other care providers. The Central for Disease Control and Protection (CDC) recognizes that up to 20% of patients treated for Lyme will remain symptomatic after initial antibiotic treatment. Unfortunately, there remains a deep divide in the standard of care for patients who are not better after a few weeks of antibiotics, the one-size-fits-all treatment promoted by the CDC and the Infectious Diseases Society of America (IDSA). Even when patients relapse with precisely the same symptoms, the CDC and IDSA take the position that it is a “syndrome,” and do not recommend further treatment despite a growing body of credible research evidencing persistent infection after antibiotic treatment. Where does that leave parents who are trying to help a child with Lyme?
A mother with a chronically ill, often debilitated child tends to follow the latest research on persistence, attend conferences, and embrace promising new treatments. But, in the eyes of a skeptical bystander, this mother has arguably become too knowledgeable about her child’s journey through Lyme. Given the wealth of medical information online, she may have learned more about her child’s health needs than the physician involved; she is likely to seek second opinions, or share her findings with members of her virtual community. Such a mother will, in short, do whatever it takes for her child to receive the best quality of care, even if it means traveling out of state (or outside the U.S.) for the most reputable providers and promising treatments. Such dedication may cause a mother to face suspicion about her motives, however, and make her a target for unfounded claims of “medical child abuse,” also known as Factitious Disorder Imposed on Another (FDIA) or Munchausen’s Syndrome by Proxy (MBP).
Frequently, there’s nothing a person can do. If they do nothing, they are accused of negligence, If they try their hardest to get answers, they are accused of MBP. It’s terrifying, and leaves permanent scars on everyone.
Accused Mother (Anonymous, Project Lyme community member)
MBP is a mental-health disorder in which a person (again, typically a mother) deliberately and surreptitiously causes, prolongs, exaggerates, or feigns physical or psychological symptoms in another (a child, most often) for the purpose of self-fulfillment. Indicators of MBP or FDIA essentially involve profiling the mother, which will unfortunately result in false reports, particularly for children with complex or controversial medical needs. The very notion of MBP is difficult to grasp. What would compel someone to fabricate or induce illness in a child? Is a so-called Munchausen Mom driven by a need for attention from health-care providers, sympathy from family and friends, or praise for her parental efforts? The nature of this rare disorder is the subject of numerous studies, true-crime documentaries, and dramatic interpretations. Yet the broad and controversial definition of MBP, as it exists in medical literature, law enforcement circles, and the popular imagination, can make victims of the very people who are doing nothing more than caring for their genuinely sick children—including those with Lyme.
“I have been an expert witness in a number of cases in which the mother of a child with Lyme disease was accused of MBP,” says psychiatrist and past president of the International Lyme and Associated Diseases Society Robert C. Bransfield, MD, DLFAPA. Allegations of MBP occur most commonly when “a parent complains of a child’s symptoms, the child is a diagnostic problem, and the mother and physician do not have an effective therapeutic alliance.” He cites cases in Florida, Michigan, and the Netherlands, in which physicians who are unfamiliar with the intricacies of Lyme question the vague, inconsistent, or seemingly incredulous accounts that mothers offer on their child’s behalf. Is a culture of medical misogyny to blame for this misconception of well-meaning mothers? And what can she do if she is falsely accused of MPB?
There are ways that families can help prevent a claim of MBP and, if necessary, defend such claims. The first thing a mother must seek is “the opinion of a physician who is knowledgeable about Lyme disease,” says Dr. Bransfield. When possible, she should obtain objective evidence of medical conditions from mainstream sources; take steps to ensure transparency between providers; and have a support person with her for doctor appointments, during hospital stays, and in school meetings. Mothers are also reminded to be respectful and patient with staff at doctors’ offices, hospitals, or schools and avoid being too demanding. Often a conflict sparks before a Child Protective Services (CPS) report is made.
It is frightening how easily they can remove your child. The Child Protection Team’s report has no evidence and is filled with allegations. You are guilty until you prove yourself innocent. It is a broken system and they do not act in the best interest of your child.
Accused Mother (Anonymous, Project Lyme community member)
If a mother is accused of MBP, it is extremely important for her to retain an attorney who is well-versed in child-protective services, known as dependency law. “Early proactive intervention can help prevent treatment delays and extensive legal struggles,” says Dr. Bransfield. The state will provide families with a lawyer if they cannot afford one, and the child should be represented by a Guardian Ad Litem attorney to represent his/her interests. Furthermore, parents are advised not to sign anything without a lawyer’s approval. With the attorneys’ guidance, parents may gather letters of support from trusted sources—doctors, family, friends, teachers, even health-insurance officials. Parents should also obtain medical records (even from the school nurse, if applicable) and request notes from all doctor’s-office visits. Parents should not post rants, or any private information at all, on social media about the MBP case that can be easily tracked and/or manipulated to create the wrong narrative.
Get a lawyer that knows dependency law right away. Do not talk to anyone until you do. You do not have to talk with anyone from DCF until you [have a lawyer]. Also, go get an independent psychological evaluation as soon as possible.
Accused Mother (Anonymous, Project Lyme community member)
In a perfect world, parents would never have to prove a diagnosis of Lyme in their children—and, of course, a real cure would be in sight. But now that there is better awareness of the late-stage manifestations of tick-borne diseases in children, says Dr. Bransfield, “false allegations of MPB associated with Lyme should become much less common.” Until then, families can continue to find information, resources, and support here at Project Lyme, or by visiting some of the links to media outlets listed below.
Noted Works
“Munchausen: Unusual Suspects,” by Pamela Weintraub, Psychology Today.
“Bad Medicine: Parents, the State, and the Charge of Medical Child Abuse,” by Maxine Eichner.
“Munchausen’s Syndrome by Proxy and Lyme Disease: Medical Misogyny or Diagnostic Mystery?” by Virginia T. Sherr
How to Avoid MBP/MCA Claims by Project Lyme
