If your child has chronic Lyme disease, PANS/PANDAS, mast cell activation syndrome, POTS, or any number of other “medically complex conditions” – you have probably experienced being disbelieved by many people.

You may be a decent, well-intentioned parent doing everything you can to figure out your child’s puzzling medical problems.

You may scour the internet to learn more about the child’s condition, track the ups and downs of his or her symptoms, and carry binders full of medical records to appointments with various specialists—many of them far from your home.

But, in a cruelly ironic twist, those very activities can get you in trouble.

Physicians who have little experience with your child’s medically complex condition may feel you are “overmedicalizing” your child.

School officials may think you’re intentionally keeping your child out of class for reasons they consider invalid.

Neighbors and even family members may believe you’re exaggerating your child’s health problems—and, in their opinion, going about things the wrong way.

And, unfortunately, any one of these people might report you to Child Protection Services. And then your problems will escalate dramatically.

Now, it goes without saying that sometimes children ARE abused by parents, and there is, of course, a legitimate role for CPS investigations.

But medically complex conditions are fraught with issues that can unfairly entangle parents—and the more they fight to free themselves, the more tied up in legal knots they may become.

For an idea of how bad things can get, consider what happened to then-teenager Justina Pelletier and her family. In 2013, her parents lost custody of their daughter after Boston Children’s Hospital disagreed with how she was being treated at a different medical center. (Read more about Justina’s situation here.)

What to do?

Beth Alison Maloney, Attorney/Author

According to Beth Alison Maloney, there are things you can do now to minimize the possibility of running afoul of CPS in the future. And, if you’re already caught up in the system, there are things you can do to get out of it.

Her thorough and well-researched advice on this subject is laid out in a new book called Protecting Your Child from the Child Protection System.

Maloney is an attorney and the mother of a child who suffered from the strep-caused autoimmune condition known as PANDAS—back before practically anybody even knew what that was.

Theirs was a complicated journey. But her son finally got better and now is a well-functioning adult. She wrote their family’s story in her 2009 book, Saving Sammy: Curing the Boy Who Caught OCD.

In 2013, she wrote another instructive book, called Childhood Interrupted: The Complete Guide to PANDAS and PANS. It primarily focuses on the medical information you need to help your child recover from these conditions.

Over the past two decades, Maloney has worked as a lawyer, guardian ad litem, and nationwide consultant in the field of child protection laws. She has seen firsthand how innocent families are sometimes presumed guilty of all manner of abuse. She has seen the rise of “child abuse pediatricians”–specialists that she believes sometimes jump to unwarranted conclusions, to the detriment of the families involved.

She wrote this book so parents of sick children can understand what they are potentially up against and how they can help themselves. As she states in the introduction, “Too much is at stake for you to plunge in without being informed.”

Read an excerpt

In the following passage from her book, Maloney writes about the “presumption of abuse” that often exists in cases involving medically complex children.

***

(What follows is excerpted from PROTECTING YOUR CHILD FROM THE CHILD PROTECTION SYSTEM copyright © 2021 by Beth Alison Maloney. Used by permission of the author. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the author.)

Parents—overwhelmingly mothers—of medically complex children are highly vulnerable to being accused of abuse. Bruises, fractures, broken bones, violent rages, self-harm, persistent pain, and tubes to breathe, eat, or flush stools from the intestine may be the result of any number of complex medical conditions, but all may lead to false accusations of Medical Child Abuse.

Child abuse pediatricians, wholly unqualified in complex medicine, do not hesitate to assert that specialists’ diagnoses are incorrect, and that prescribed medications, treatments, and interventions are unwarranted.

Child abuse pediatricians claim that symptoms, behaviors, and life-saving interventions are actually signs of abuse because the mother falsified, exaggerated, or “instigated” treatment.

They claim that diagnoses which cannot be “disproven” are particularly suspect and name, as examples, Mitochondrial Disease, Ehlers-Danlos Syndrome, and PANS/PANDAS.

Reports alleging abuse by parents of medically fragile children generally arise from one of three situations:

• Parental disagreement with a doctor,
• Emergency department visits, or
• Medical disagreements among doctors, when the physician whose opinion is not chosen files a report with CPS.

These situations can arise in either outpatient or inpatient care. Usually, the mother is reported. And when both parents are reported, the focus of the investigation will quickly shift to focus on the primary caretaker, which is usually the mother. She will be accused of weaponizing the medical system to harm her child. The buzz words in the initial reports usually include one or more of the following:

• interference with care,
• doctor shopping, or
• over-medicalization.

The splintered nature of complex care is part of the reason for these reports. The conditions are not well understood and warrant multiple specialists.

Ideally, all of those specialists would be readily accessible, practice together in one close-knit group, have admitting privileges at hospitals near the children’s homes, and see eye-to-eye about every recommendation.

But that is rarely the case. Different hospitals, in different cities, far from the child’s home are much more likely. Medical opinions differ. Communication between experts is scattershot if it happens at all.

There are conflicting treatment recommendations. The child’s pediatrician probably has no relationship with the experts or the hospitals. Physicians in emergency departments of local hospitals, where the children are often brought for stopgap help, have little familiarity with the diagnoses. Even when specialists do have admitting privileges, that will not ensure against claims of abuse. Child abuse pediatricians may wrest control of the patient’s care from the specialist. So, you must do what you can to avoid situations and places that are rife with the possibility of accusations against parents.

Medically fragile children do not succeed without extraordinary parenting skills. Those same skills often boomerang and are twisted into allegations of abuse.

Parents of medically complex children function as Central Command. They learn medical terms, research the origins of their children’s disorders, advocate for appropriate care, argue with insurance companies, schedule appointments, travel out of state to reach experts, and join parent groups on social media for much-needed support.

They are tasked with passing information and opinions back and forth between physicians at different institutions and practices who often do not communicate amongst themselves.

And when experts disagree, parents must make tough decisions on treatment paths, which will invariably rankle the egos of some providers whose suggestions are rejected in favor of others.  

When reports for suspected Medical Child Abuse are made, CPS will seek the help of a child abuse pediatrician. And that pediatrician will start with the presumption that the child has been abused.

Guided by confirmation and anchor bias, the child abuse pediatrician will selectively gather evidence that confirms the presumption, disregard contradictory facts, and anchor an opinion by prioritizing the information that they assert is consistent with abuse.

All of the mother’s words and actions will be filtered through the presumptive lens of abuse. Then, the CPS caseworker and government’s prosecutor, having no independent knowledge of medicine, will move in lockstep with the child abuse pediatrician to remove the child from the mother’s care.

************

Maloney’s book is divided into six parts:

1. An overview of the Child Protection System and how it functions.
2. How to navigate the maze and what to do if you find yourself accused
3. The special challenges facing parents of medically complex children
4. Building a team—lawyer, family, friends
5. A deeper dive into the court system
6. Rebuilding your lives after being falsely accused of abusing your child.

No parent wants to think about the possibility of losing custody of their child–especially when that child is seriously ill. But parents of medically complex children should familiarize themselves with the issues involved and take steps to head off trouble.

Knowledge is power. And if you’re falsely accused of abusing your child, you need all the power you can get.

For more information, see Beth Alison Maloney’s website.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.