Dr. Bex
speaker
498 appearances
7 recordings
1 series
first heard Nov 2024
last heard Jun 2025
Dr. Bex’s voice in public audio — every appearance, attributed to the second.
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Appearances
So therefore, this, we have to be kind of more sleuth and ask, look for what I call the big disconnects in what we see and what we hear, you know, with these patients. Yeah.
Jill Glick at 65, my medical record, the University of Chicago, has a lot of mistakes in it. I don't have diabetes. I don't have COPD. I can't get my record fixed because my primary is not at the University of Chicago. He can't go in and get rid of it because somehow that got listed by a mistake and there's no quality improvement.
When I was a resident, the residents always look at me and roll their eyes. I said, when I was a resident, you got the medical record and you opened up and the first page was the problems list and you took your pen and you crossed out the ones that no longer existed and you made a new progress. You said, these are the current medical and these are your chronic diseases. That
Communication's been lost. So Munchausen by proxy cases, MCA cases, we help that process by not having universal medical record. Everybody should have a baseline universal medical record. And the people who make a lot of money off of Epic, I mean, Judy, whatever her name is, God bless her. She was a smart lady in 1970s to come up with electronic record. And I was like, this is so cool.
So that adds to it. So part of one of the things I would always love is that there be a national requirement of all electronic records have to talk to each other. And not just talk to each other. Show everything. Like right now, if I go into another hospital, I only get like little snippets.
There are outlying doctors that just suck up these cases. You know, there are cowboys out there who just have odd beliefs that, oh, yes, everybody they see has Pott's disease or everybody they see has chronic Lyme or whatever. And they come up with these diagnoses and literally they do very well.
diagnosing these oddball diseases, which probably exist in a small number of people, but everybody they see has that disease.
Oh, yes. Oh, yes. They just flock to them. There's a problem in the medical care community, too. There's doctors who make the same diagnosis over and over and over. And the mothers get online and they say, oh, everybody that he sees has mesenteric artery syndrome. And that if you go there, you'll get surgery for that.
Now, what happens most of the time is that doesn't cure the pain, strangely enough. But they still go and they still get their surgeries.
Exactly. Or the pain is totally unrelated.
The other problem is that once these kids get to be a certain age, they're very much part of the problem. They're very much trained to be in constant pain, in constant distress, unable to eat. Whatever. And then, you know, then it's a real hard problem because to turn that around is really an issue.
Hi, Andrea. I'm good.
I mean, it's a whole spectrum. So I would say it's kind of mitochondrial disease. pathology, I guess. I mean, there's a whole lot of diseases and things that are affected or start at the level of the mitochondria. So your mitochondria are in every single cell of your body. They're what creates our energy. So it's kind of the energy source of all of our cells. And the thing is that
So mitochondrial disease takes on many forms. And I think any pediatrician or metabolic specialist can tell you that there are severe forms of mitochondrial disease that are devastating. These are the ones we know the most about. There are names, MELAS, they're all kind of acronyms, but M-E-L-A-S is one syndrome. and others that are much more well studied and much more understood.
And those patients are usually very devastated by their symptoms. I have had some mitochondrial patients who have passed away in the first year of life. One was actually the patient that got me into pediatrics after doing a year of psych training. It was actually the patient that inspired me to go back and actually just do pediatrics was a patient with severe mitochondrial disease.
and he passed away before he was a year old. So there is true mitochondrial disease. And I think if you look at some of the people even involved in MitoAction, some of them are researchers or do their work with these specific conditions. And I don't want to, I guess, poo-poo those anything about true mitochondrial disease because those children are devastated.
And then there's this whole other world of mitochondrial disease that has become much more, I don't know if it's popular, much more known maybe, or people are talking about it a little bit more. And this is the concept that if you have even the slightest thing going on within your mitochondria, that of course you wouldn't have energy. Of course you would maybe have muscle weakness.
Of course you wouldn't be able to get out of bed some days and things like that. And that some of the symptoms that are starting to be associated with mitochondria are maybe chronic fatigue or other things that have come up over the years that maybe we haven't been able to explain, there's now studies into whether it involves the mitochondria.
So where I am as a pediatric hospitalist is I've had patients with those very severe mitochondrial diseases. So I actually find myself a little bit frustrated with some of kind of all of this being lumped together because I feel it is two very different entities. And now mito, quote unquote, has become kind of this catchphrase. And
It's difficult because the testing, some of what Andrea was talking about in the Justina case, would be extremely positive and there would be no question in those kids that have those true genetic syndromes. And now there's this whole world of kind of sequencing all your mitochondria and looking into everything.
Showing 381–400 of 498 · page 20 of 25
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