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Munchausen by proxy Accusations in Children with Mitochondrial Disease

September MITO Meeting welcomes guest speaker Dr. Alex Flores from Tufts Floating Hospital for Children, Boston Massachusetts

This topic is dramatically important to the parents of children with complex gastrointestinal presentations of mitochondrial disease.  MitoAction brings this topic to our Mito community today in response to the increasing number of accusations of child abuse and Munchausen by proxy that have been placed upon many parents of children struggling from the devastating symptoms of mitochondrial disease.

DOWNLOAD THE PDF OF SLIDES TO ACCOMPANY THIS PRESENTATION HERE

LISTEN TO THE RECORDING OF THE MEETING HERE

Join us this month as we celebrate "International Mitochondrial DIsease Awareness Week" across the globe and join efforts to improve awareness, acceptance and understanding of mitochondrial disease and the impact that the condition has on children and adults.

Dr. Flores will discuss "Munchausen by proxy and the intestinal failure patient" and take a candid look at cases where children with mitochondrial disease and intestinal failure caused the family's ability to care for the child to be called into question.  Dr. Flores will address the challenges that face both physicians and parents when caring for these patients.

alex flores mdDr. Alex Flores, MD

Dr. Flores serves on the MitoAction Medical Advisory Board and iis Chief of Pediatric Gastroenterology and Nutrition, Floating Hospital for Children at Tufts Medical Center, and an Associate Professor at Tufts University School of Medicine. He is a graduate of the Universidad de San Carlos de Guatemala School of Medical Sciences, and received graduate training at Baylor College of Medicine, Children's Hospital Boston/Harvard Medical School, Duke University Medical Center, Hospital Militar, Jacaltenango Hospital, Roosevelt Hospital in Guatemala, and the World Health Organization-UNICEF. Dr. Flores is board certified in Pediatric Gastroenterology and Pediatrics and works closely with Dr.  Mark Korson to support metabolic and mitochondrial patients with GI dysfunction.  In addition to developing the LAPEG procedure, Dr. Flores' specialties include GI motility disorders, and general pediatric gastroenterology.

SUMMARY, FROM THE SEPTEMBER 2009 PRESENTATION

Munchausen's Syndrome is defined in Taber's Medical Dictionary (17th edition) as "a type of malingering or fictitious disorder in which the patient may practice self-mutilation and deception in order to feign illness." Munchausen was a fictional 18th century German baron who entertained others by lying about various illnesses and symptoms.   It was around 1951 that Munchausen Syndrome and Munchausen's by proxy were named as diagnoses.  Munchausen's by proxy occurs when adults falsify symptoms of illness or even cause them in a child and is considered a form of victimization and abuse.

Because children with Mitochondrial Disease present with different and often changing symptoms, including fluctuating or "impossible" gastrointestinal issues, Munchausen's by proxy is unfortunately the mistaken conclusion drawn by health care professionals who have little or no understanding of Mitochondrial Disease. This discussion is only a beginning step toward addressing this issue, and is intended to educate and open a dialogue that ultimately should improve collaboration and care of the child with mitochondrial disease.

Intestinal Failure

Children with intestinal failure present with many complex symptoms and are among those who are most likely to be involved with false allegations of Munchausen's by proxy.  Intestinal failure is the inability to digest or utilize nutrients. Patients with intestinal failure are severely ill and can eventually die from this condition.  Patients with other serious GI diseases such as Crohn's disease actually survive longer than those with intestinal failure. Pediatric patients with short bowel syndrome and other congenital GI disorders fall into this category. It is important to note that though you can survive without the large intestine, a person cannot survive without the small intestine.

There are many disorders that can cause gastric dysmotility and there are many anatomical anomalies that can cause some of these severe GI diseases especially among children.  However, dysmotility may also present even without an anatomical problem; often this situation occurs due to problems related to the muscles and nerves which control the GI tract (see Dr. Flores presentation about dysmotility in mitochondrial disease).

Efforts to treat gastric dysmotility become paramount because, though a person can live on TPN (Total Parenteral Nutrition) for a long time, numerous and serious problems arise with long-term use. Most frequently, the lines become infected or the patient simply runs out of sites for these parenteral lines.  There are not a lot of options for these patients, including children, who cannot eat and therefore cannot survive - and from this perspective, it is little wonder that the parents could become overwhelmed by their care. However, instead of providing support, it is often these very parents who are most likely to be accused of Munchausen's by proxy, i.e. purposefully harming their child or "creating" the condition.

Characteristics of Munchausen's by proxy

There are certain factors that seem to be the most common when a diagnosis of Munchausen's is made.  Numerous unusual and inconsistent symptoms are reported.  The reports from parents and health care professionals often are inconsistent. Often diarrhea, constipation, nausea, vomiting and rectal bleeding are all reported.  Note that these are often the very same symptoms that children with real disease (i.e., Mitochondrial Disease which affects their GI tract) present with.  In 30 years of practice, Dr Flores has only encountered four patients with true Munchausen's Syndrome - all others have had real health issues, which were unrecognized or misdiagnosed.

Other "red flags" related to Munchausen's are symptoms which occur only when parents are present, caregivers who are extremely knowledgeable about the disease and tend to "teach" health professionals, multiple health providers who state different things, absent fathers, multiple hospitalizations, and parents who block the idea of stopping treatment modalities. In order to interpret the symptoms appropriately, the health care providers must be experts in the areas of the patient's primary symptom, must perform motility studies and must be able to accurately interpret these, and must be able to communicate with the patient's team to understand the results as part of the bigger picture.

It is possible that what may be interpreted as "red flags" of Munchausen's may alternatively  be attributed to the demands and anxiety related to care of a very sick child.  For example, anxious parents may not give a good history, or may "doctor shop" because they are unsatisfied and may be unhappy with the care their child is getting, especially when they feel that no one can actually diagnose, treat or understand the problem.  Certain conditions, especially mitochondrial disease, will present with intermittent symptoms, and it will take a skilled and patient clinician to arrive at the right diagnosis - one that is an illness not Munchausen's by proxy. Psychologists have described that the population of patients and parents of children with Mitochondrial Disease are much more vulnerable to a false Munchausen's by proxy accusation simply due to the nature of the disease.  In fact, a hallmark characteristic of mitochondrial disease is the presentation of several unrelated symptoms that together, "don't make sense".  Clinicians who feel that a parent is intentionally making symptoms appear, is behaving to insure that the illness continues, and consults multiple physicians may suspect Munchausen's - but should still "trust, then verify." In other words, believe the parents, run appropriate diagnostic tests, seek the input of every part of the child's team, and take very seriously the responsibility to the child to act as an advocate and do no harm.  
Management Issues

Because patients with gastric dysmotility present in so many different ways, management can be difficult.  Attention must be paid to every minute detail of the history: diagnostic tests, previous documentation, biopsies, and lab results.  It is the responsibility of the individual bringing the diagnosis into question to involve or request a team approach, utilizing nurses, social workers, psychologists, nutritionists, physical therapists and legal advisors.  The hospital may not be the best setting for all of this to work.  It should only be after careful consideration that the child be separated from the parents, and recognition of the issues surrounding the separation if the child has mitochondrial disease are very important.  Symptoms of mitochondrial disease may fluctuate, or be difficult to recognize.  Parents caring for a chronically-ill child with a untreatable condition can appropriately cause anxiety, fear, concern and "over-reporting" of symptoms.  Caution should also be taken when altering a child's regimen or routine, as the abrupt shift can be devastating for the child suffering from a mitochondrial disorder (a good example is stopping the administration of "unnecessary" fluids, which in a child with mitochondrial disease, may be the buffer that prevents the child from entering a metabolic crisis.)

Case Studies

Dr. Flores presented two case studies as examples.  The first is a patient who currently is a 25 year old female with complex GI disease due to a mitochondrial disorder.  Her history includes use of long-term TPN and a gastrectomy.

When this patient was 20 months old she presented with many GI symptoms and several relapses. At 2 years of age, because of the reoccurring symptoms, her mother was investigated by a very reputable hospital for Munchausen's by proxy.  At age 10 she had additional treatment, developed infections, and demonstrated abnormal GI motility. Finally, at age 16 she received a muscle biopsy and was diagnosed with Mitochondrial Disease and is currently being treated and managed as well as possible. It took many years and many diagnoses to get to where she is today.

In contrast, Dr. Flores remembers a case of a 19 year old female who presented with bowel related symptoms, had multiple surgeries and even a bowel transplant and a splenectomy.  Eventually it was determined that this was a real case of Munchausen's by proxy. The mother refused psychiatric care.  Clinicians should feel obligated to finding a correct diagnosis before judging, and must be willing to recognize that the medical establishment does not always have the answers. 

Questions from the MitoAction Listeners

Some of the "red flags" of Munchausen's's by proxy - use of medical terminology, multiple specialists,reporting of symptoms, etc. -  may be exactly the pattern that parents of a child with mitochondrial disease demonstrate by necessity....how do you distinguish?

This is true. The lack of continuity of clinicians often occurs with Mito patients because parents feel that they have to be the coordinators of the child's care because no one knows very much about Mito. Here in New England we are lucky because we have medical centers where Mito is known and managed, but in other parts of the country this is not the case.  Whenever possible, parents with children with Mito or with inconsistent symptoms, should seek out a major medical center as near home as possible.  The key is to find a physician  who is interested in your child and is willing to spend time with you and to get to know you - old fashioned "good doctoring."

In areas of the country where there is not a great deal of information or knowledge of Mito, in order for parents to avoid being considered "over labeling" which can be a red flag, they should refer clinicians to the Mito web site and  to the organization Mito Action.  Doctors can also be given the names of experts in other parts of the country who they can contact about Mito - to convince them that the symptoms the child is suffering are real!

The Clinicians Guide which is online at the MitoAction site provides an excellent resource for those in parts of the country where knowledge about Mito might be minimal. In this way, the parent is not "labeling" the child with a specific disease.  The clinician can find out himself or herself just what the symptoms are and how they might present in children and come to the diagnosis him/herself rather than through the parent.

MitoAction can also act as an advocate and help to explain the complexity of Mitochondrial Disease and the variability potential of symptoms.  Mitochondrial Disease is still a disease in its infancy as far as what we know about it and how to treat/manage it, as was gastric dysmotility when the disease was in its infancy 20 years ago.

Another argument against false accusations of Munchausen's by proxy when the patient has Mitochondrial Disease is that it is very possible that the child may not "look sick".  In many ways, Mito is truly an invisible disorder and is confusing due to variable presentation even within a same family with the same phenotype or genetic inheritance of the disease.

How do you deal with a child where Munchausen's was first diagnosed, then real disease was discovered later?

This may be devastating and should be considered before intervention (separation) is forced upon the family.  Children do remain frightened and fear that separation from parents may be long term.  The child should be reminded, however, that the parent did win out in the end and was persistent enough to finally get a real diagnosis for the child.  Some parents who have experienced this trauma report that their children are still anxious, fearful, and unable to recover from the psychological damage years after the wrongful accusation and separation.  For children with mitochondrial disease, they are often unable to control or monitor their symptoms and rely on parents to act as their voice and their advocate.

Is there any other way to distinguish Munchausen's from real disease other than separating the child and parent when the symptoms only occur in the parent's presence?

In Dr. Flores experience, his opinion is that separation is sometimes necessary, but unusual if necessary for more than three to five days.  However, even a short separation can be very traumatic for the child and the family, and should be handled with great sensitivity and respect by all involved.  The family is already stressed because they have a very sick child and no definitive diagnosis. They are afraid that their child may die.  Clinicians hold the important responsibility to advocate for the child and respect the family.

Another factor here to remember is that when a child is at home, parents and children understand symptoms and describe them differently.  Fatigue in a child with Mitochondrial Disease does not always mean that the child looks sleepy; instead, a child with mitochondrial disease related fatigue may become "unorganized", irritable, unfocused, less verbal, avoidant, complain of pain, as he or she becomes fatigued.  In many cases, parents are able to recognize and identify the nuances of the child's symptoms better than others who are less involved with the child, including teachers, nurses, etc.  The manner in which symptoms are manifested becomes very important and should be described in detail when sharing and taking the child's history. It cannot be emphasized more clearly that, with mitochondrial disease, it is not unusual for the entire body to be potentially affected - the battery is literally running on low. Interpreting this and working through the complexity of the symptoms is essential to get to an accurate diagnosis.

One listener shared the story of her daughter who had multiple episodes of regurgitation at home and none recognized at school.  Further evaluation demonstrated that the child had over 100 episodes in one school day, but the school personnel only recognized very obvious vomiting rather than the smaller but real episodes which this young patient was having. This highlights the need to describe and understand the presentation of the child's symptoms in detail.

A listener who acts as a patient advocate shares that it is also possible that a child who is separated from home/parents will indeed improve while hospitalized because there is air conditioning (home has none), he is getting lots of rest (no school), lots of fluids (IV's), and reduced stress (no expectations, school, work etc).   Again, perhaps this appears to be a case in which the parents are causing harm, but could be a legitimate result of misinterpretation of the effects of the environment on mitochondrial disease.

Mitochondrial disease is a diganosis that places significant stress on a family and caregiver burden on the parents.  Awareness of the disease, support of the patient and family, and recognition amongst residents, medical fellows and physicians about the potentially devastating impact of a false Munchausen's accusation are critical in order to offer hope to the family caring for a child with mitochondrial disease.

Summary by Cristy Balcells RN MSN and Joanne M. Turco, RN, MS

To find summaries from other presentations, go to the blog page

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Comments

leg0666's picture

leg0666

08/26/2009

An appreciative family.

My son was in 7th grade when the first signs of his Mito issues manifested seven years ago. His primary symptoms have been dramatic GI issues, severe sinus and fatigue. He has undergone 40 surgeries, countless tests, etc. We have had numerous GI, ENT, immunology, allergy, cardio, neuro, endocrine consults--to say the least. The GI issues he faces continue to baffle and dismay doctors, although having the Mito diagnosis at least helps to put the 'unknown and uncharacteristic' symptoms into context, instead of attributing them to everything from A to Z (including much doubt and skepticism). I look forward to reading the transcript of your meeting; I wish there was more known and your facilities closer to home. Keep up your efforts...my son is counting on you to help him fight this fight.

jadesmom's picture

jadesmom

08/26/2009

I am looking forward to this teleconference. My daughter's school accused me of Munchausen by Proxy about a year and a half ago. They believed I made up all her medical problems and that I was choosing not to feed her! She was eating very little solid food but was doing great with her elemental formula and growing. She also has eosinophilic esophagitis and gastroparesis. It was quickly resolved but was quite traumatic.

saltaylor01's picture

saltaylor01

08/27/2009

I am never available during the time of your conference call but can't wait to see the transcript on this one. My now 6 yr old son with POLG1-mitochondrial depletion syndrome, first exhibited signs after his first cold at 4 months of age. His eyes went pinpoint (so we saw opthamology), he developed GI issues (so we saw GI), he lost nearly all of his developmental status (so we saw neuro), and his heartrate went erratic (so we saw cardio). Basically we saw genetics for testing and while their tests were pending a hospitalist who didn't know my son at all called DCFS to report Munchaussen's Syndrome by Proxy!! I got a call one day to say my son 'had a very serious condition due to abnormal lactate and pyruvate'...then the next day received a visit from a police detective, such accusations are handled both criminally AND through DCFS in our community due to high mortality rates!!! Although all of his treating doctors didn't suspect foul play it took a year to clear our name and the records have lived on in his charts since! That was the single most traumatic thing we have been through in the mito journey...and it took us another 4 years to find out it really was mito due to doctors then questioning everything due to the records from DCFS. I applaud your efforts to increase awareness of this issue, MANY of the families I know with mito have been through this situation as well...and I was told by one of the mito specialists that we see that 35% of mito families are reported for Munchaussen's...a pretty scary reality in our medical system!
addvo4byson's picture

addvo4byson

09/06/2009

Hi saltaylor01 or anyone who might be able to help.  I have a friend who's son was diagnoised with mito disease two weeks ago by a mito specialist, Dr Mary Kay Koenig.  A week after this diagnosis my friends son is admitted to a new hospital that Dr Koenig is affiliated with for testing.  During this week of testing my friend has been calling the Dr's who have been treating all of his medical issues for the past two years.  In order to get results of tests that were done at another hospital in the city so that his new team of Dr's have comparison data.  At the end of this week of testing CPS shows up at the hospital claiming that a Dr from the other hospital sent them a letter accusing the mother of Munchaussen's by proxy.  So the family was asked to leave the hospital and their child is currently still at the hospital until CPS has time to review the case.  This all just happened and I was wondering if you have any advice or information that could help us in quickly getting this case dropped and family reunited.  Thank you in advance to anyone who might be able to help us.

jweber5's picture

jweber5

11/23/2009

 

I just want you to know that i am enduring the same thing right now. We were also at that same Dr's hospital, and are going through the exact same thing. In fact we go to court tomorrow. We also live in Houston. We were asked to step away from our sons care also. The biggest problem is that a month later, my son is still in the hospital with issues, and they have been unable to pull his central line.  Sadly enough we were only doing what the dr's told us. IF we do what we are told we get in trouble, if we don't do what we are told we still get in trouble. It seems to be a no win situation, and our son is not really doing any better than he was 2 months ago .

Kaceysangel's picture

Kaceysangel

08/27/2009

I fully understand the entire munchausens by proxy syndrome as I am a parent whose child was removed and I did not get to see her again till she was 12 and I was accused of this as well. WHY because being a mito child each second can be different and each symptom can come and go as quickly as a blind of an eye. Luckily for me, the parents who now adopted my beautiful girl allow me to see her and know that I did not cause this and nothing was in my head. Its a sad day in our children's lives when the STATE and school nurses have more power than the parents. All my case took was a school nurse and a neighbor who was a nurse praticioner to say ugly hateful unfounded statements because I knew more than they did when it came to my daughters care and frankly I was not very tactful in dealing with anyone who came near my Kacey Lynne and did not understand what Mitochondrial ment. WE as parents who deal with a child who eats but can not eat enough due to energy issues or ends up on a g tube due to swallowing difficulites and bowl obtruction issues know how frightening it is but those who are ignorant are the ones who place the blame on the parents. I hope and will always be a part of the march to find a cure for even though my Kacey is not in my home she is in my heart and soul every moment of every giving day and she is my life till the end... ty Jackie Moccia MA
janice's picture

janice

08/28/2009

I am so sorry to hear that you had to go through that! How heart-wrenching. I felt sick to my stomach when i read your posts. It is just not right in this day and age!
Tina_EvesMum's picture

Tina_EvesMum

09/06/2009

Living in the UK I am not sure how helpful my advice would be. We were accused of MBP a few years ago. Contact the Dr who diagnosed Mito. Ask her to contact the named person from CPS then request a meeting with her CPS and the lead Dr at the hospital. Also is there a person from Mitoaction who can help with written information on the mysterious inconsistant pathways of Mito that can lead to difficulties with diagnosis and hints of MBP being suspected falsley? I am praying for your friend I know how damaging this is for them emotionally and in their confidence in themselves as well as Drs. much love
arktjk's picture

arktjk

09/09/2009

I recently listened to the talk of the Munchausen's discussion and my stomach is churning with disgust. I am appalled at the comments from the pediatrician that phoned in toward the end of the call. I just am shocked that with a firm diagnosis a doctor would actually consider separating the child from his/her parents. I almost am not able to comment anymore because of how sick I feel about this. Why does it seem that instead of the medical system advocating for the family, they are turning against them? Do they not have an oath for that? After having just lost my daughter to this disease, I cannot imagine having someone come to my house and take my other child away, even with a definite diagnosis.
Melody's picture

Melody

11/23/2009

As a comment to the two Houston families above. I know firsthand that a boy with mito has been taken by Cps at Hermann Childrens hospital recently for no good reason!`Also warning do not use Caring Bridges CPS will use it against you in Texas!! I am active in the Mito Community here and am happy to answer questions.
CPSISKILLINGOURCHILDREN's picture

CPSISKILLINGOUR...

04/23/2010

Many of our children are being referred to TEXAS CHILDRENS HOSPITAL in Houston, TX It has come to our attention that there are problems at that facility between their staff, and a particular Doctor who specializes in MD. Fully 1/3 of this Doctor's patients are being reported to CPS as being abused solely to hurt the Doctor and her reputation. Our children are caught in this fight, and they are being taken away from our parents without regard to the diagnosis of MD, or any proof of abuse or neglect whatsoever. Landon Weber and Byson Burt are two children who are currently in the custody of CPS and CASA, and the parents rights are being terminated. We call for an immediate BOYCOTT of TEXAS CHILDRENS HOSPITAL until they stop their staff from referring MITO patients without a full Medical Examination and determination by MITO experts FIRST. PLEASE JOIN US AND LET TCH know that you will NOT send your child to them under present conditions. Thank you, Bill Medvecky flds.ws 239-826-3831
Tablefor6's picture

Tablefor6

04/21/2011

Can someone let me know which Doctor(s) are doing this? We are in the area and do not want to mix with that.  Thanks

khonsyed's picture

khonsyed

07/14/2012

Thank you for all you awesome posts. I have a family member that got diagnosed recently. We started a blog site to learn and share info on http://thecrohnsdiseasesymptoms.com. We will be reading yours too!!