What is Medical Child Abuse?

According to Dr. Thomas Roesler, MD, a child and adolescent psychiatry expert who specializes in Medical Child Abuse:

Medical child abuse (MCA) is defined as a child receiving unnecessary and harmful or potentially harmful medical care at the instigation of a caretaker. Previous names for this type of child maltreatment include Munchausen syndrome by proxy, factitious disorder by proxy, pediatric condition falsification, and fabricated or induced illness by a carer.

In this form of child abuse a caretaker, most commonly a mother, engages in a pattern of behavior that results in medical care providers giving care that the child does not need and which is or could be harmful. [1]

How does Medical Child Abuse relate to chronic Lyme?

According to the American Academy of Pediatrics, “‘Chronic Lyme disease’ is not a medical diagnosis.”

Medical professionals are worried about fake diagnoses and unnecessary treatments given to children, especially in the context of “chronic Lyme disease”.  Health Protection Agency of the UK warned:

  • Children misdiagnosed with “chronic Lyme disease” are a particularly vulnerable group, and one of the references cited by the ILADS guidelines authors [2] illustrated the dangers of misdiagnosis and gross and painful mistreatment.
  • Experience from other clinicians has indicated that some children diagnosed as having “chronic Lyme disease” according to the ILADS criteria received oral and parenteral antibiotics for years, and had unnecessary interruption of schooling and social development, to the extent that there has been a loss of childhood.
  • Serious physical harm to children from adverse events related to overuse of broad spectrum antibiotics for unsubstantiated Lyme disease has also been well-documented. [3]

Dr. Roesler, together with pediatrician Dr. Carole Jenny, MD, MBA wrote about two disturbing instances of apparent Medical Child Abuse involving chronic Lyme in their book Medical Child Abuse: Beyond Munchausen Syndrome by Proxy [4].  Please read the excerpt.

Hallmarks of Medical Child Abuse

The following excerpts contain useful information from a Medscape slideshow on Medical Child Abuse prepared by Dr. Paige Culotta, MD and Dr. Marcella Donaruma-Kwoh, MD, FAAP:

No specific individual symptoms are associated with MCA; a broad range of presentations may be seen. However, certain patterns of caregiver behavior and disease development are common.

Frequently, the histories are inconsistent, remarkably complicated, and quite difficult to follow, with care scattered across multiple institutions. Additionally, some caregivers may fabricate, exaggerate, or falsify symptoms, whereas others may go on to induce symptoms in the victim.

This caregiver behavior, by both adversely affecting the child and misleading the physician team, may impede the development of a clear management plan and ultimately give rise to chronic treatment complications for the child.

Abusive caregivers manipulate all systems of which they become a part, including not only health care systems (usually several) but also school, community, and support group networks.

In MCA cases, it is common for caregivers to engage the social media community in discussing the medical condition of the victim as a form of attention seeking, and the discussion is often accompanied by purposeful distortion of the medical information. Over time, caregivers often relay an escalation in illness severity to their online community, regardless of whether any such escalation is actually taking place.

Caregivers may also contact online donation sources or “wish” organizations, unbeknownst to their medical teams. This use of internet attention lures the community into participation, propagation, and support of the child’s “illness.”

Abusive caregivers frequently have professional training in the medical field, which lends them some credibility as historians even when the histories are far-fetched. Offending caregivers also seek out attention and empathy from hospital staff and other patient families, behavior that can easily mimic the actions of devoted parents embracing a community and advocating for a truly ill child.

The secondary gain of praise and admiration is thought to be a motivator for ongoing abuse. A key behavior that distinguishes these abusers from truly concerned parents is that they lavish attention on the child when others are present and essentially ignore the child in private.

Often, diseases that are difficult to diagnose or disprove definitively are latched onto with great enthusiasm. Upon closer observation, healthcare providers find that the reported symptoms are not witnessed during the hospitalization. They also find that the history does not follow an expected clinical pattern and that the presumed illness does not respond to conventionally effective treatments.

When presented with medical test results that are within normal ranges and invasive procedures that yield unremarkable findings, abusive caregivers typically persist with the original history and may even embellish it further. They insist that the testing is inaccurate or that a procedure needs to be repeated, and they perpetuate the abusive pattern of “doctor shopping” for additional medical opinions to obtain increased medical intervention.

Caregivers who perpetrate MCA commonly misrepresent medical information; thus, it is vital to compare the information provided by treating physicians in the medical records (eg, test results, medication prescriptions, and medical impressions) with the history presented by the caregiver.

Because medical providers in pediatrics are trained to trust that caregivers know their child better than anyone, they rarely question the histories that caregivers provide. To add to the clinical difficulty of assessing patients who have been subjected to MCA, 30% of MCA victims have a true underlying medical illness in addition to their numerous false diagnoses, a circumstance that further muddies the clinical presentation in this subpopulation.

Siblings are commonly victims of MCA as well. Children who have sustained MCA may develop chronic invalidism because they accept the “illness” and believe themselves to be disabled and unable to attend school, work, or even walk. Older children may participate in the deception because doing so is a behavior that was learned from and expected by their caregiver, whom they love. [9]

Signs of Medical Child Abuse can be seen in many chronic Lyme stories where one or more children in a family are diagnosed with unsubstantiated illnesses and treated inappropriately.

LymeScience has compiled a list of Red Flags of Chronic Lyme Quackery that may be helpful in determining if a child is a victim of Medical Child Abuse. In addition to a false Lyme diagnosis, children may receive false diagnoses of “coinfections“, including “toxic mold illness”, “chronic tick-borne Bartonella“, candida overgrowth, electromagnetic hypersensitivity, and babesia.

In response to the proposal of the now-passed Massachusetts law that requires insurance companies to pay for unnecessary antibiotics for presumed Lyme disease, pediatric infectious disease specialist and Assistant Professor of Pediatrics Dr. Christina Hermos, MD wrote:

Those of us in pediatrics have the extra burden of witnessing children subjected to unnecessary long-term antibiotics. These children often have other medical or psychological conditions that are left untreated due to an unnecessary focus on Lyme disease.

When they do not recover on antibiotics for Lyme, typically an alternative antibiotic is prescribed rather than an alternative diagnosis explored. When I care for these children as part of my practice, I see parents have significant difficulty accepting that their children’s symptoms are not from Lyme, because they have so much hope that treating this infection will cure their persistent symptoms.

I find this situation especially difficult because there are many resources and other treatment options that I can recommend for these children that would likely help them. [5]

See also: ILADS doctor says a boy is harmed by Wi-Fi, so the parents sued the school.

References

1. Clinical Advisor: Medical Child Abuse (Munchausen by proxy)

2. Intramuscular Bicillin For Persistent Pediatric Lyme Disease

3. Ettestad et al. Biliary complications in the treatment of unsubstantiated Lyme disease, 1995.

4. Medical Child Abuse: Beyond Munchausen Syndrome by Proxy (Excerpt, Amazon, WorldCat)

5. Letters from Christina Hermos, MD and other medical professionals in response to the 2016 insurance mandate

6. The Scientific Parent: When Seeking Treatment For A Child Crosses the Line: How to Recognize Medical Child Abuse (Part One)

7. The Scientific Parent: When Seeking Treatment For A Child Crosses the Line: Medical Child Abuse Vs. Rare Diseases (Part Two)

8. Teenage Boy With Multiple Pain Disorders: A case of mild factitious disorder by proxy

Presentations

9. Drs. Paige Culotta and Marcella Donaruma-Kwoh: Slideshow: Medical Child Abuse to Child Neglect: A Spectrum of Maltreatment

10. Dr. Carole Jenny: Pediatric Grand Rounds on Medical Child Abuse and Medical Neglect

11. Sue Foley and Des Runyan: Understanding and responding to Medical Child Abuse (aka Child Abuse in Medical Settings, MSBP, Health Anxiety and FIIBP) (video, slides)

12. From Munchausen’s Syndrome by Proxy to Medical Child Abuse: Shifting the Focus to the Victim and Away from the Abuser (video, info/slides)

13. Dr. Jamye Coffman and Michael Weber: What’s in a name? Munchausen Syndrome by proxy vs Medical Child Abuse

14. Medical Child Abuse: What obstructs us from protecting kids?