Parents: How to Avoid MBP Claims While Treating Lyme Disease
Advocating for Families of Children with Complex Medical Issues to Avoid
Medical Child Abuse Claims
Medical Child Abuse Claims
What is Munchausen’s by Proxy (MBP)/factitious disorder by proxy (FDBP)/Medical Child Abuse (MCA)?
Definition: The original name was derived from Munchausen’s syndrome, a disorder which is characterized by deliberate induction or fabrication of medical symptoms in oneself in order to obtain or prolong medical attention. The name of the disorder was changed to factitious disorder by proxy in the DSM-IV. According to the DSM-IV:
The essential feature [of FDBP/MBP] is the deliberate production or feigning of physical or psychological signs or symptoms in another person who is under the individual’s care. The motivation for the perpetrator’s behavior is presumed to be a psychological need to assume the sick role by proxy. External incentives for the behavior, such as economic gain, are absent. The behavior is not better accounted for by another mental disorder.
According to these criteria, in order to justify a diagnosis of FDBP, several conditions must be present. First, the perpetrator’s behavior must place the child at risk or cause harm. The harm can be related to the administration to the victim of painful or potentially risky diagnostic procedures or treatments. Second, the perpetrator must be fabricating these symptoms consciously; that is, she must be aware that the child does not have the condition for which she is consulting physicians. Third, the purpose of the symptom fabrication must be the secondary gain achieved by taking on the patient role by proxy.
Indicators of FDBP essentially involve profiling the mother which will unfortunately result in false reports, particularly for children with complex or controversial medical needs. “Indicators” for MCA may include:
1. Mothers appear to need or thrive on attention from physicians. The mother may appear to be “over friendly” with medical personnel.
2. Mothers are either directly involved in professions related to health care or at least are very knowledgeable medically. Mother tends to be quite “fluent” in the medical jargon and able to explain medical details easily.
3. Mothers take the child to multiple physicians (appearance of doctor shopping) and the child has numerous hospital stays.
4. Mothers demand specific procedures or school accommodations
5. Mothers leave out significant portions of the child’s medical history, including information that disproves claimed diagnoses.
6. The child has an atypical medical presentation and clinical course. The patient’s history appears not to match laboratory, ancillary study or physical exam findings.
7. There are frequent changes of domicile.
8. The symptoms improve in the hospital, but recur when the child goes home.
9. Mothers are unwilling to leave their child’s bedside
10. Multiple family members, including siblings and/or the mother, also allegedly have complex medical issues.
11. The child’s symptoms are reported by the mother, but never seen by other health care professionals or other first hand witnesses. The child is often not the complainant.
12. The child fails to thrive due to nutritional neglect.
These characteristics, as well as others cited elsewhere in MCA literature, were culled from case studies of mothers whom physicians had diagnosed with MBP, most of which were not independently confirmed.
MBP/FDBP is extremely rare, but all of the major health systems dedicate significant bandwidth to the disorder and state that it is often missed. See Mayo, UF Health (“very often, Munchausen syndrome by proxy goes undiagnosed”), Cleveland Clinic (‘it is difficult to assess how common the disorder is because many cases go undetected”).
Families in which the mom and/or multiple kids have Lyme, there is increased risk of false accusation: See, e.g. Cleveland Clinic “a thorough review of the child’s medical history, as well as a review of the family history and the mother’s medical history (many have factitious disorder imposed on self) might provide clues to suggest FDIA [MBP].”
Best Practices to Prevent and Defend Allegations
- Maintain a notebook of all relevant medical records, tests performed, medication lists, and medical care providers. Keep a record of who ordered what test, or who made referrals to other doctors. Referrals made by treating providers helps to negate the appearance of doctor shopping. Many children with Lyme have gone to multiple doctors, and been on multiple protocols by doctors that led nowhere until the LLMD is found. Demonstrating that the search for answers stopped when the Lyme specialist was found could dispel the MBP claim.
- Request corrections in medical records if you see inaccurate information.
- Create a 1-2 page document with an overview of relevant information to provide to healthcare workers.
- When possible, obtain objective evidence of medical conditions from mainstream sources. Laboratories that require an order from a medical doctor are preferred to those that do not. Consider testing with labs affiliated with a university (i.e. Stonybrook for Lyme requesting all bands to be reported or Galaxy Diagnostics for Bartonella). If using speciality labs, consider including lab validation data in patient’s medical notebook.
- Infections such as mycoplasma pneumonia and chlamydia pneumonia are often found in children with Lyme using traditional labs, require combination long term therapies, and are less controversial illnesses.
- Keep in mind that social media posts, particularly public posts may be used in dependency hearings. Do not constantly talk about the child or self in the “sick role,” but also talk about the child’s “normal” activities – what he or she did at school or with friends. Blogging can offer emotional support, but also balance posts with discussions about the positive things and normal activities.
- Medical fundraisers may be necessary, but also may give the appearance of a monetary incentive. Be careful about the wording of the posts when seeking funding.
- Avoid unnecessary demands (medical or educational). Most psychotherapists, schools and medical care providers are mandatory reporters. Mandatory reporters are required by law in many states to attend seminars on the rules for reporting. Some of the rules are very vague, leading to more false reporting. More “difficult” parents who request expensive interventions are more likely to be reported, particularly by schools.
- Avoid being rigid with new treatment plans. Be open to new ideas for treatment particularly if the child is hospitalized.
- If possible, allow the child to describe their symptoms in their own words. Moms who speak over the child or speak for the child are more likely to be reported.
- Maintain decorum with medical care providers, hospitals, and schools. Choose battles carefully. Allow others to see your child struggle at times and then work together to find a solution to the problem.
- Get the professionals on your team – all wanting to do what is in the best interests of the child. Ideally, only use providers who are known to be knowledgeable and/or supportive of diagnoses.
- Take steps to ensure transparency between providers. Sign medical release forms, provide copies of outside labs/test results from specialists to pediatrician, have pediatrician sit in on telemedicine appointments with specialists (if possible), etc.
- Parents are generally advised NOT to sign releases for the school to speak with the medical practitioner without either the parent(s) being present, or the school directing questions to the doctor in writing, with the parent involved in this process. Parents are also cautioned against allowing the child being seen by a medical or mental health practitioner chosen by the school.
- Repeat changes in doctors will be used against you. Avoid the appearance of “doctor shopping” and only make changes when absolutely necessary.
- Have a support person with you for doctor appointments, during hospital stays, and during school meetings. Attend appointments as a team. In court, for example, when a mother attends an appointment and then tells the father what the doctor said, the father’s decisions and point of view are considered tainted. But when that father listens directly to the doctor, he is viewed as having come to his own, independent decisions, which is a much stronger stand in a court of law. Since the vast majority of those accused of MBP are women/moms, having a male/dad attend (either in person or by phone) may help.
- Experts recommend against a child with Lyme attending the school meeting. They will be intimidated by the process and when asked questions by the school like “How do you feel?”, just about every child will say “fine” regardless of symptom severety.
- Be respectful to all and have patience with new staff at doctors’ offices or hospitals. Often a conflict sparks before a CPS report is made. Develop a relationship with staff in the doctors’ office – from receptionist to medical assistant. Dealing respectfully with the medical office flies against the notion that MBP involves a need for attention on the part of the mother.
- If the child is homeschooled, be sure to keep detailed records of educational progress and obtain letters from medical care providers to document deficiencies or needs for accommodation. Having children participate in groups designed for homeschoolers (often small, and led by a parent) could be helpful.
- Keep in mind that travel out of town, state, or the country may be used against you especially if treatments are deemed to be experimental or unavailable in the home domicile (i.e. hyperthermia, stem cell treatments, ozone).
- While it can feel isolating, do not discuss the child or your family’s life with ANYONE, even family members or friends, that are not supportive of diagnosis/treatment.
- Immediately retain a lawyer well versed in Child Protective cases when facing child removal (or danger of child removal). Do not sign anything without the lawyer’s approval. The state will provide you with a lawyer if you cannot afford one. The cost of an attorney at this phase is relatively inexpensive and a key opportunity to dismiss the case.
- The child should also be represented by a Guardian Ad Litem and a Guardian Ad Litem attorney.
- Gather Supports. With the guidance of your attorney, ask for letters of support from trusted sources, including family, teachers, coaches, doctors, home care nurses or therapists, schools, etc. Many facilities prevent employees from openly supporting an accused family until called to appear in court, so it becomes vital to reach out quickly. Insurance companies can be of help in some situations because they often require written documentation from the doctor in order to grant approval, stating why a test or procedure was medically necessary.
- Verify You Have All Medical Documentation. If not already in your notebook, obtain past medical records to document when, why and who ordered tests, procedures and medications, any results, and both doctor’s and nurse’s notes.
- Keep meticulous current medical and CPS contact documentation, including what is discussed, who is in attendance, plan if presented, and date and time. [NOTE: You have the ability to record and video CPS interactions per GAL presentation linked below].
- Play Nice! When parents are worried and stressed, emotions can turn to anger and hostility. Remember to choose words carefully, and to not swear nor yell. Avoid hostility directed at staff.
- During dependency investigations, avoid discussions about the child who is ill, and the family, on social media. It’s too easy to track. Ask those close to you not to post anything about you, your child’s illness, or your family on social media.
- Argue that parents have a constitutional right to make medical decisions (choosing between 2 different doctor’s recommendations for treatment).
GAL training video: Advocating for Families of Children with Complex Medical Issues When MCA Accusations are Made Law Review article: Bad Medicine: Parents, the State, and the Charge of ‘Medical Child Abuse’
Munchausen: Unusual Suspects by Pamela Weintraub
Resources for Specific Medical Conditions
When Your Child Has Lyme Disease: A Parent’s Survival Guide by Sandy Berenbaum, LCSW and Dorothy K. Leland
Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy
Mystery? by VT Sherr
Mast Cell Activation
Book: Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity
Bad Medicine: Parents, the State, and the Charge of “Medical Child Abuse” by Maxine Eichner
Summary – Complex Medical Needs and Medical Child Abuse by Mary Beth Hollinger, RN, MSN