In this episode, Andrea and Dr. Bex discuss mitochondrial disorders, which Dr. Bex has seen first-hand in her pediatric patients, and their connection to medical child abuse, most notably in the Justina Pelletier case. Like most illnesses seen in Munchausen by Proxy cases, while there are tests that doctors run, mitochondrial disorders present challenges in distinguishing genuine cases because of the array of symptoms they present. They discuss how support groups and websites–while so important for families dealing with complex chronic illnesses–can serve as playbooks for offenders. Andrea and Dr. Bex take listeners through the website for Mitoaction.org and its advice that appears to be directed squarely at perpetrators of medical child abuse. * * * Visit mitoaction.org Preorder Andrea's new book The Mother Next Door: Medicine, Deception, and Munchausen by Proxy. Click here to view our sponsors. Remember that using our codes helps advertisers know you’re listening and helps us keep making the show! Subscribe on YouTube where we have full episodes and lots of bonus content. Follow Andrea on Instagram for behind-the-scenes photos: @andreadunlop Buy Andrea's books here. For more information and resources on Munchausen by Proxy, please visit MunchausenSupport.com The American Professional Society on the Abuse of Children’s MBP Practice Guidelines can be downloaded here. Learn more about your ad choices. Visit podcastchoices.com/adchoices
Chapter 1: What are mitochondrial disorders and their significance?
This is not a baby with these very severe genetic disorders. But because we had opened that can of worms, then I could get these other sort of testing, you know, the CVS testing and then the, or the amniocentesis. And those had a little bit of a risk of miscarriage, you know, very small, but had some risks associated with them.
And the question then became, do you want to do this additional testing? And if you do, do you want to test for this whole laundry list of things? that your baby might have or be genetically predisposed to. And I made the decision that I did not want to do that.
And part of the reason was because the conversation that I had with my doctor and with the genetic counselor was, okay, if we are screening for things that would be not compatible with life, that's something that I want to know because I'm going to make a decision based on it.
But if it's not something where I'm going to terminate my pregnancy, then I don't want to know because I'm not going to make any decisions based on it. And there's nothing I can do right now. And we just have to see how things go. So, you know, I was very lucky. Again, this all turns out well. I have a beautiful, healthy two-year-old boy.
But it was very interesting to think about, like, you know, and we talked through both of our extensive health histories and all the things the baby might have and, you know, testing for this and testing for that. And this is really common part of pregnancy in the modern era is like all of this testing that you can do.
And I can see where for an anxious parent, this could be the road to hell because it's you could then find out, I mean, what if somebody like, Oh, there, there is an issue with their mitochondria or there is an issue with their this. And then like, you think you're seeing symptoms or maybe not, you know, there's a lot of things that could be symptoms or could not be symptoms.
I mean, it's very, there's, this is not a black and white science. And so I can see how on the one hand, it's really wonderful that we have so much more awareness, so much more, you know, testing capabilities and we are getting into some of these nuances and some Some of these things are extremely complex, and I think we should talk about that.
And also, it can really exacerbate things for anxious parents. And as we always talk about, abusive parents are not anxious parents. They are, I mean, I guess they can be both things, but Munchausen by proxy abuse is not parental anxiety. It is intentional deception.
So they also open, unfortunately, a huge door for abusers to just come in and say, my child has this thing and it's going to be very, very hard for doctors to disprove that your child has that thing. And then you find, you know, these parents
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Chapter 2: How is Mitoaction.org related to medical child abuse?
So if these events are happening once a month, do you hook them up for a whole month or do you hear the story and say that is concerning enough to me to start a medication? So that is where I think these kids do come to me already on two or three medications and.
Because if you look back over the timeline, the story has only grown over time from they do these staring episodes to now they're turning blue and I need to give them CPR to now they're lasting 30 minutes and I have no way to stop them. So again, the story escalates and escalates and escalates until somebody gives them the medication. And then at the next place, it escalates even further.
And again, negative testing can prove certain things. ever disprove something completely. I mean, I'm sorry, I can't, but there are certain situations and I think the patterns show that there are certain conditions and certain things that do come up because they are those ones that leave gray area.
Right. And they don't come in saying, you know, that's why you don't see cases where they come in saying like, I'm trying to think of something off the top of my head, but they're like, you know, it's not these things that fall into that category of sort of yes, no. I mean, they fall into like... Right.
Like they have congenital heart disease and you're like, well, we did an echo. No, they don't. Right.
Or like the one that comes up a lot. Cystic fibrosis, yes, is the one that was in the Hopiobar case and that has come up in many cases. And that the most common way to test for that is to do a sweat test where they essentially collect sweat on the child's skin while they're running around and then test for the salt content.
Hope Ybarra interfered with that test by putting nasal spray with salt in it on the thing. Very easy to mess with, and that is, I think, why we see a fair amount of fabricated CF in these cases. Or parents just lie about test results, right?
So yeah, and I think we're talking about that sort of spectrum of things that can happen where one is an anxious parent who's worried that their child is having seizures and they are going to be relieved when they find out that their child is not having seizures Be like, oh, my kid's just staring off into space and that's just something that six-year-olds do.
And it's not actually a seizure, even though I accidentally went down the rabbit hole and convinced myself that this was a seizure because 15 people on TikTok convinced me that. And I say, this is a very relatable thing, right? In our modern era, we're like, we get worried that we have this thing. You know, a lot of people are worry warts. A lot of people are like, I have a stomachache.
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