19 Feb 2018

Medical Child Abuse: Physical and Psychological Harms

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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]

Medical Child Abuse often encompasses both physical abuse (from unnecessary treatments and procedures) and psychological abuse (from the children’s beliefs in the fictional diagnoses).

Educational Neglect may occur when a child misses school due to the false diagnoses and treatments. Additionally, children who are victims of Medical Child Abuse may not receive proper treatment for legitimate problems.

How does Medical Child Abuse relate to Chronic Lyme?

In a 2023 review [18] of Medical Child Abuse by subspecialty, chronic Lyme disease was cited as an example. According to the American Academy of Pediatrics, “‘Chronic Lyme disease’ is not a medical diagnosis.”

The AAP notes that Lyme disease prognosis is excellent, but false positive diagnoses are frequent:

There are many websites that contain misinformation about Lyme disease that only enhance the already inflated and inaccurate fears about the consequences of Lyme disease of many parents and patients.

Many patients labeled as having chronic Lyme disease actually have medically unexplained symptoms. Such patients are best treated symptomatically rather than with prolonged courses of antimicrobial therapy, which have been associated with serious adverse effects and little or no benefit.

It is important to acknowledge that the patient has symptoms even if they are not due to Lyme disease.

A 2019 study (shareable link) from Italy of seven children with chronic Lyme diagnoses found none had Lyme infection. Instead, five had somatic symptom disorder, one had an anxiety disorder with somatic symptoms, and one had a viral infection.

Child abuse documented

In the 1990s, CDC scientists reported [3, 13] on patients in New Jersey who had received fake Lyme disease diagnoses and were dosed with long term intravenous and/or oral antibiotics. A number of these patients developed gallbladder disease or bloodstream infections as a consequence of receiving a powerful antibiotic called ceftriaxone through an intravenous catheter.

Of 25 patients who developed gallbladder disease:

  • The median age was 12.
  • The youngest was three years old.
  • 23 (92%) were under the age of 18.
  • 21 (84%) were female.
  • 14 (56%) needed to have their gallbladders removed.

The CDC scientists noted the alarming trend of young girls receiving false late-stage Lyme disease diagnosis.

In 2017, other CDC scientists reported on five patients who received false chronic Lyme diagnoses, including an adolescent girl. The girl was tortured for eight months: three months of a three-antibiotic oral cocktail and five months of intravenous antibiotics with oral antibiotics.

The catheter that had been placed for the intravenous antibiotics caused the girl to be hospitalized for “fever to 105.3°F (40.7°C), hypotension, and tachycardia consistent with septic shock”.

In 2021, pediatricians in the Netherlands reported (shareable link, mirror) on two 15-year-olds who experienced adverse events associated with being treated by a “chronic Lyme therapist”. Both teenagers tested negative for Lyme disease, but were inexplicably treated for it anyway, delaying appropriate care. In one case, the pediatricians reported “False hope, very high costs, and painful injections with high doses antibiotics”. In the other case, the pediatricians reported “unnecessary diet and antibiotics.”

In 2022, pediatricians in Toronto published a case of a 7-year-old girl with cerebral palsy who was abused with a false chronic Lyme diagnosis, multiple courses of needless antibiotics, and at least 6 months of homeopathic/naturopathic snake oil.

The girl inexplicably received a combination of amoxicillin-clavulanate and sulfamethoxazole-trimethoprim (aka Bactrim) for 4 weeks before having a life-threatening drug reaction that required hospitalization in the Pediatric Intensive Care Unit. Even in a real Lyme case, experts recommend against every aspect of this treatment: long term antibiotics, multiple repeat courses, combinations of antibiotics, and sulfamethoxazole-trimethoprim.

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.

ILADS quackery endangers children

In 2010, the UK’s Health Protection Agency warned of potential harms from so-called guidelines issued by the pseudoscience group ILADS:

  • 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]

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. [17]

Medical Child Abuse: Rampant in “Chronic Lyme” advocacy groups

Signs of Medical Child Abuse can be seen in many chronic Lyme stories where one or more children in a family are diagnosed 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. We suggest making a timeline of events, including dates of diagnoses and treatments.

The biggest red flag is a child being treated by a pseudoscience practitioner, such as someone who advertises as  Lyme literate, integrative, functional, alternative, complementary, Traditional Chinese Medicine, holistic, natural, chiropractic, homeopathic, and naturopathic.

In addition to a false Lyme diagnosis, children may receive false diagnoses of “coinfections“, including:

They may also be falsely told that they are immunocompromised. And because of prevalent anti-vaccine sentiment among those who promote chronic Lyme and integrative/functional/naturopathic pseudoscience, children may be neglected by being denied vaccines against real diseases.

Chronic Lyme groups frequently scare mothers into believing they passed a chronic Lyme infection to their children. The children are then diagnosed with “congenital chronic Lyme”, which does not exist.

Advocates for Chronic Lyme pseudoscience also scare families into thinking that harmless stretch marks—which often appear during teenage growth spurts—are evidence of a Bartonella infection. But Bartonella:

  • has nothing to do with stretch marks,
  • is not transmitted by ticks,
  • is not a coinfection of Lyme disease, and
  • in cat-scratch disease caused by Bartonella henselae, typically goes away on its own with no treatment.

In response to the 2016 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]

In 2004, Dean A. Blumberg, MD, FAAP testified in Sacramento, California, where authentic Lyme disease is rare:

In my practice, I have seen patients harmed by prolonged antibiotic therapy that was not beneficial for the patient in my opinion.

These children had undergone surgical procedures in order to provide long-term intravenous access for antibiotic therapy. These central lines occasionally become infected with skin bacteria, such as Staph and Strep. These bacteria then cause sepsis and shock, commonly known as blood poisoning, and these patients may die.

There are also less serious side effects from these unproven therapies. These may include inflammation of the gall bladder, cholecystitis, which often requires surgery. Allergic reactions to antibiotics may occur, which can be life-threatening. And severe intestinal inflammation, colitis, may result from antibiotic exposure.

Dr. Blumberg is Associate Professor of Pediatric Infectious Diseases at U.C. Davis Medical Center.

See also:

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. [Full text pdf]

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

9. Child Welfare Information Gateway: Perpetrators of Munchausen by Proxy

10. NBC News: Parents are poisoning their children with bleach to ‘cure’ autism. These moms are trying to stop it.

11. Isaacs D. Lyme disease or a lemon? J Paediatr Child Health. 2016.

12. Peri F, et al. Somatic symptom disorder should be suspected in children with alleged chronic Lyme disease. Eur J Pediatr. 2019. (Shareable link)

13. CDC. Ceftriaxone-associated biliary complications of treatment of suspected disseminated Lyme disease–New Jersey, 1990-1992. MMWR Morb Mortal Wkly Rep. 1993.

14. Sigal LH, Patella SJ. Lyme arthritis as the incorrect diagnosis in pediatric and adolescent fibromyalgia. Pediatrics. 1992.

15. Hamilton JC, et al. Origins and Early Management of Medical Child Abuse in Routine Pediatric Care. JAMA Pediatr. 2021.

16. Hornor G. Medical Child Abuse: Essentials for Pediatric Health Care Providers. J Pediatr Health Care. 2021.

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

18. Egge MK. Medical Child Abuse: A Review by Subspecialty. Advances in Pediatrics. 2023. [cites chronic Lyme disease as “commonly seen in suspected MCA cases”.]

Presentations

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

20. 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)

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

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

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

24. FBI Law Enforcement Bulletin: Investigating Medical Child Abuse

25. Center for Innovation and Resources: Munchausen by Proxy: Guidelines for Identification and Intervention

Web sites

Relevant Cases

Updated October 12, 2024