WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, August 20, 2013

Munchausen Syndrome by proxy and your Mito Specialist.

In general, I think I have said what I need to say about what seems to be a higher incidence of CPS reporting in the Mito populations-as far as I am concerned in my opinion, it exists.

Yesterday I spotted an article that had the names of most of the Mito Specialists in this Country listed on it. The title(and link) is;

Practice patterns of mitochondrial disease physicians in North America. Part 1: Diagnostic and clinical challenges

Great article. I will try to recap what I got out of the article.

As patients we are all very aware that depending on which Mito Specialist you use, you may get different treatment from clinical findings to laboratory interpretations. I strongly recommend folks pay for and read this one for themselves to come to their own conclusions. It certainly made me feel that my thoughts on variabilities between Specialists were fair assumptions on my part. There were all sorts of little gems of information that helped me understand why so many patients like Abby are not diagnosed or it takes years to diagnose. In a nutshell, if you have no irregular laboratory findings in urine/bloodwork, your care may stop there. Also, I was a bit surprised to see that not all biopsies are tested for depletions. According to the article/survey cited and linked above, "Less than half of clinicians measured muscle CoQ10 levels or assessed the muscle for mtDNA depletion" via biopsy. Also, without metabolic labs being abnormal a Mito Specialist is not as likely to order a muscle biopsy, which for patients like Abby(no laboratory abnormalities in urine/blood labs) can lead to being undiagnosed.

Originally what caught my eye on this article was that this was a survey of many of the Mito Specialists in the states,and I was hoping it would help me understand better the forever changing trends in Mito care. Also, it mentioned survey results on Secondary Mitochondrial dysfunction and since I am still not sure if Abby's depletion is secondary to her congenital myopathy and mast/allergy issues or if it is a primary I was hopeful this article might help me clarify my stance. Unfortunately, it did not. Though it did confirm that I am not alone in my doubts. Within the Mito Specialists who responded to these surveys, it seems there are variables on defining and treatment of secondary dysfunction. For the most part most Specialist surveyed agree there is Secondary Mito dysfunction, but after that their thoughts and opinions are less unified on secondary onsets and on how or whether to provide care.

Near the end of the article there is a paragraph about child abuse, more specifically it mentions Munchausen Syndrome. I was a little surprised to see it, and somewhat reassured at the same time. It is a huge concern for many parents with difficult to diagnose and treat children, and to know it is recognized as worthy to survey as part of care profiles in the Mito world indicated to me it is as hot of a topic amongst the Specialists as it is between the parents.

In essence, the paragraph covered how Mito Specialists that were surveyed handled suspected child abuse. They used a few different methods.
83 percent sought the assistance of their hospitals child advocacy committee.
80 percent contacted the referring provider for further details.
60 percent planned an inpatient admission for the patient and 60 percent consulted with social work for more evaluation.
Another option was a sit down with the patients family and other Drs. to discuss the issues.

There were many words used in the original text that left this part of the survey very unclassified and open for a wide array of interpretation.

The word "Selectively" was used. That could be very different from Specialist to Specialist. Maybe 1 Specialist thinks that if I said "Abby is so sick we have seen gobs and gobs of Drs. over the years, and despite symptom A,B,C and D happening all the time,no one is helping." that I might be "over reporting" where another Mito Specialist would simply understand that after 14 years year of Specialist appointments I am frustrated and sick and terrified of not getting answers, which would be considered common sense? Would this scenario even be an issue? I don't know because the article did not provide any definition for "selectively". For years after leaving the good care in NY that Abby received there,we would have appointments with her family Dr. or Pediatricians over the years. As her primary care providers they often expressed concern over various symptoms and would refer Abby to Neurology. We would go to Neurology, get the blow off and no answers. Eventually, when they made the referral, we quit taking Abby. I was sick of Neurologists and other Specialists often not just dismissing our concerns but being disdainful that we had "wasted their time.". So, to defend myself as a parent, after years and years of watching your child be sick, be not normal, of pediatricians or family Drs encouraging us to seek specialized help for our child not because of our concerns but because of theirs, you do get to the point where you start to wonder, what will I have to say or do to get this jerks attention? Is there some magic word? I am not dramatic by nature, but by the time Abby was 14 and going down the tube quickly, I wondered if I was going to have pitch a tent and carry signs outside their doors demanding they help(and so help me and them, I was so close to doing just that!!) I did not care any longer if I looked like an idiot or a crazy woman. Abby needed help and she was not getting it. I cried, I yelled, I demanded, I complained and I behaved very out of character(and I am honest enough to admit, badly at times) for me. Looking back I am certain many of the specialists probably shuddered and thought about calling in sick when they saw we were bringing Abby back in for another appointment. The ones who were able to use their extensive education and understand we were scared for our child despite my attitude, well they get 5 stars. After 14 years of suffering disdain and arrogance that I was just a "mom" and an idiot, I had all I was going to deal with.. period. Hear me roar. To be honest, we often wonder if Abby had been 4 or 5 years old when I threw such a hissy fit, if we would have been one of the families that got referred to social services?

What really got the hair on the back of my neck was the "60 percent planned an inpatient admission for the patient and 60 percent consulted with social work for more evaluation." Kind of sits wrong with me as far as the approach on that.. it could be done in a much less damaging way I think. I have heard of this happening here in Houston and in other parts of the Country. 60 percent is a majority. If I had an underage child these days trying to get care for my child, I would be very very cautious.
These survey results on this topic are really too incomplete to come to any conclusive thoughts on the topic,just enough for me to ramble about my personal speculations on the topic. What I got from it was that as parents we should be concerned, likely very concerned about how we present ourselves and our children to Specialists in the Mito World and honestly how we interact with Drs period. The trust is no longer there, it must be earned. For us, and for them.

I am so sick of the "them against us"..

Advocating for your child is a slippery slope- if your gut says something is off about a Dr? Run. Just my opinion. Once CPS is involved , it too often means your child will be removed from the home. Not just for a couple days, but potentially for MONTHS. Surely Mito Specialists and other medical specialists understand when they check a box and hand over a child's record to the CPS squad at their hospital, they are forever damaging the family. That the child will suffer even further. That the parents will likely lose everything they own to pay for legal fees- in essence even if proved that there was no abuse, irreparable harm has been done to the child and family. According to the most recent research I have been able to find googling, Muchausen's is rare, EXTREMELY rare. Rare enough that the seemingly higher numbers of reports in the Mito World seem off, way off to me at least.

I think the greatest fault is not the Dr. for worrying about their patient or the parents of the child for becoming neurotic caring for a sick kid- the issue is how our Court systems and family service systems are set up.

Research PROVES that a child removed from even a pretty dysfunction family(drug use, alcoholism, neglect) will do WORSE in foster care or a group home then if reunited with their family even dysfunctional family.(I was a foster child for a time so have first hand knowledge) Even if parents are failing to care for their child properly, odds are it is learned behavior, I would like to believe in general no matter the dysfunction in a home a parent has a deep attachment and love for their child. It is that bond that determines the child's future outcomes more so then the dysfunction. When removed from the family home, that child loses that bond. Without that bond their futures become even more stacked against them. Any hope they had are reduced even further. In essence they have been given more barriers to having a positive future then given any help to increase their odds of being healthy and successful. Foster children are at high risk to commit crimes. They are at higher risk for drop out from high school, drug abuse, teen pregnancy. Left in the dysfunctional home, yes they are still at higher risk, but lower risk then destroying the family bond. Separating a child from their parent even temporarily will cause unrepairable damage. To the family, to the siblings, to the child. CPS will always believe Drs. over parents- if a Dr. says they are concerned, CPS is more likely to remove the child from the home, then investigate. If I was a CPS Worker, I would trust a Dr. more then a parent myself, so I cannot blame them for any assumptions or judgements made, their job is to protect the child. Once removed, reuniting can and frequently takes months, it destroys the family bond, it destroys their finances. Even if the parents are proven innocent, the damage inflicted on the family unit is permanent. A family that was healthy before reporting ,has now become dysfunctional. Despite the often good intention to protect the child, if you are wrong when you report parents to your chain of command, you have caused permanent harm and damage to not just the patient but the entire family unit. Damage that doesn't heal that will make it much harder for the family to be successful and healthy. Probably not the outcome any of us want. Things need to change. Parents are not the enemy. Drs. are not the enemy, even CPS is not the enemy. The enemy is a system that too often does far more damage then good. It must be stopped.

What we have today is a system that despite all of our best intentions, is broken. A system causing more harm then good for a growing population.

I have been exceptionally grateful to both the UMDF and MitoAction for acknowledging this issue. I am grateful that the Mito Specialists have acknowledge the issue.

Now to find the bottle neck, and to fix it otherwise, we are all guilty of contributing to the failure of our current system. Guilty of inflicting more harm then good but with the best intentions.

“The price of greatness is responsibility.”
Sir Winston Churchill (1874-1965);

“It is not only for what we do that we are held responsible, but also for what we do not do.”
Jean Baptiste Poquelin Molière (1622-1673)

A man who has never gone to school may steal from a freight car; but if he has a university education, he may steal the whole railroad.
Theodore Roosevelt

We are shut up in schools and college recitation rooms for ten or fifteen years, and come out at last with a bellyful of words and do not know a thing.
Ralph Waldo Emerson (1803-82)


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