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Saturday, April 7, 2012

UMDF Newsletter addresses Munchausen by Proxy

I was pleased to open up my UMDF newsletter and see that they attempted to address the concerns of Munchausen by Proxy.

However, they did not cover Medical Neglect and other terms that that are frequently used by CPS against families with chronic health issues. I am still trying to find any statistics that will show whether the Mito population is at higher risk, but it is pretty safe to theorize that since Mito is difficult to diagnose, has a huge range of symptoms, and families are often in panic mode to try an avoid another progression not to mention in a more aggressive mode with Drs. to make them figure out what exactly is wrong- well, odds are that the Mito population is at a higher risk for being reported. Add to that many Drs. simply have a very limited view of what Mito is, and that the criteria for Mito changes frequently as the Medical world learns as they go, of course it would make Mito patients standout as targets. Also, small children with significant GI complications and multiple hospitalizations are going to be looked at more closely- unfortunately, the two symptoms that are common in the Mito population are two major symptoms of MPS. Toddlers, GI, and multiple hospital stays are on the warning criteria list. Now don't get me wrong, I would be the first one to want to remove a child from a family that is truly abusing the child, but I suspect too many families are being investigated purely because they have the bad fortune of having a sick kid who's symptoms from Mito mimic that of the warning signs of MPS.

It was a well timed article. I did feel it was more about what the "patients" are doing wrong to attract CPS attention- definitely an article written from a Physicians standpoint, but the very fact that UMDF addressed it, means they are listening to the concerns of the Mito population and over all I was very pleased to see they recognize that it is a concern. Now, if the Medical schools would start teaching their Drs. and nurses more about Mito so that they quit reporting those cases that should not have been reported we will be headed in the right direction. Again, I can theorize that the majority of CPS investigations into Mito families started at either the Hospital or Drs. office. So, that is the population that needs a little bit more education to prevent and protect families from being destroyed by CPS. Drs and nurses may think that CPS has the skills the to sort the mental illness from medical disease- but they don't. CPS workers are hard working-but they are not Drs. They are not nurses. They rely completely on the Dr.s opinion and will always believe the Dr. over the patient/parent. The Dr. or nurse is responsible for those cases where CPS falsely destroys a family. The stress of being investigated by CPS destroys families- even once they are found innocent the months of having a government agency dig through your life, talk to your family and friends, question what food you have in your house, question every facet of every choice your family makes.. CPS workers are not Drs. They do not know what the Drs. knows. If I was a CPS worker and a Dr. told me some little baby was being abused- well I would go after the family to protect the child like a pitbull! So, the focus needs to be on who is reporting these cases and make sure they know that if they are wrong,and decide to let CPS sort it out based on their guess or concern that there may be an issue, they are potentially destroying a family that is already under incredible stress from a horrible disease. CPS doesn't have the education to make the medical diagnosis- They depend on the reporting Medical staff to make the right decision, and they are then forced to do whatever they have to protect the child- even if there turns out to be nothing to protect the child from..

How frequent does MPS occur? I have seen a few different numbers but the Cleveland Clinic had this,

The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (Text Revision DSMIV-TR), which is the standard reference book for recognized mental illnesses in the United States, organizes factitious disorders into four main types: those with mainly psychological symptoms; those with mainly physical symptoms; those with both physical and psychological symptoms; and those that do not match the conditions for the other three types. MSP falls into the fourth category. Fortunately, it is rare (2 out of 100,000 children).

There also is different types of Munchausen-

Types of MSBP Perpetrators
Libow and Schreier (1986) described three major types of MSBP perpetrators: Help Seekers, Active Inducers, and Doctor Addicts.

Help Seekers are mothers who seek medical attention for their children in order to communicate their own anxiety, exhaustion, depression, or frank inability to care for the child. Case examples of Help Seekers include homes studded with domestic violence, marital discord, unwanted pregnancies, or single parenthood.

Active Inducers induce illness in their children by dramatic methods. These mothers are anxious and depressed, and employ extreme degrees of denial, dissociation of affect, and paranoid projection. Secondary gain for these mothers includes a controlling relationship with the treating physician and acknowledgment from medical staff as outstanding caretakers.

The Doctor Addicts are obsessed with obtaining medical treatment for nonexistent illnesses in their children. The falsifications of Doctor Addicts consist of inaccurate reporting of history and symptoms. Such mothers believe their children are ill, refuse to accept medical evidence to the contrary, and then develop their own treatment for their children. The children usually are older than six years, and the mothers are suspicious, antagonistic and paranoid. These mothers tend also to be distrustful and angry.

A few other terms you will run across when reading about MSBP via Medscape-

The American Professional Society on the Abuse of Children (APSAC) introduced the following term pediatric condition falsification (PCF) to describe the condition in the abused child. PCF may or may not be associated with FDP. However, the APSAC requires the presence of both FDP and PCF to diagnose Munchausen syndrome by proxy.

The term medical child abuse (MCA) was proposed recently by Roesler and Jenny to describe the excessive, unnecessary and harmful medical or surgical treatments unknowingly imposed on the child at the instigation of a caregiver.[5]

For excellent patient education resources, visit eMedicine's Children's Health Center. Also, see eMedicine's patient education articles Child Abuse and Munchausen Syndrome.

To prevent innocent families falling victim to the CPS system(which really needs some interventions to change it to be more supportive vs destructive)Drs. and Nurses and other Medical personnel need to understand that once they report a family, that family is GUILTY until proven innocent. The destruction to the family even if reunited because they were able to prove they were innocent is substantial. These falsely reported families suffer Post traumatic Stress syndrome. These families no longer trust Drs or Schools. These families will suffer financial damage- it is outrageously expensive to pay for medical specialist testimony, legal representation, court costs etc.

First, do no Harm.

Families should not have to worry about being reported to CPS because they have a sick kid. But, right now many do. Yes, the UMDF article is correct, there are things that families can do to reduce the risk of false allegations by Medical Staff, but let us not forget that the Medical Staff and CPS could be educating themselves as well on how not to falsely accuse a family. Fixing one area is not going to be enough.

CPS should be a godsend to a family that is struggling, but instead when we hear CPS it strikes terror into the hearts of families with little children. We should not have to edit ourselves around Drs. and Medical staff- they have extensive educations and should be held to the higher standard to understand the medical symptoms more then the patient- that is their job. Yet, with the way the system works currently, families are responsible for any miscommunications.

In America we have been taught that we are innocent until proven guilty. Unfortunately, that is not always the case. We have all seen or read about a family who has been falsely accused and their family destroyed - not by a Dr., or a Teacher, or a family member, but a systems that is dysfunctional and out of control.

Lets fix what is broken instead of hoping that families can learn enough to fend off false allegations.


Jenna said...

After reading the descriptions I can see how parents of children with mito can be through to have it. I would wonder myself at times. It is so hard to stay sane.

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