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
And sometimes I think ignorance is bliss in a way that when we can find so much information. So what if I found out now at my age that shall remain nameless or I have a flaw in my mitochondria? Does that... affect me? I mean, I think I've done okay, right? And maybe I'm tired sometimes and maybe I have this sometimes, but I think it's that it has become this whole world.
And some of times, like Andrea was saying, it is not just you have mitochondrial disease. It is the most severe debilitating wheelchair bound G-tubes, ports, PICC lines. That's where I struggle because those kids that truly do have mitochondrial disease and diagnosed at a young age, went through all of that and often didn't make it. So.
Correct. The problem with mitochondria... Not the problem. I mean, thank God for them. But the thing about mitochondria is they're in every cell in our body. So it also allows for symptoms in every organ system. So I think that is another reason that maybe it does come up is that because they're everywhere... they can affect everything.
And again, those most severe cases, those kids, one of the reasons they struggle so much is because you need mitochondria for all of it. And again, I think that's why they do show up in these cases. The interesting thing is though, mitochondrial disease, like Andrea was saying, you need them from the day you are born. So
It's the ones that show up in adulthood or teenage years, not to say there aren't some specific ones that do. But it also brings into question, like, what were your mitochondria doing for those first 15 years? Because we need them our whole lives.
I think this is a, I mean, it's a very slippery slope, I think, and it's difficult to kind of tease it out. But at the end of the day, physicians should not be seeing some of these diagnoses on a problem list and necessarily changing how they address a patient when they're in front of them, right?
So someone who presents with right lower quadrant pain, that's the lower right side of the abdomen, and they have fibromyalgia or chronic fatigue or any of those things, if they have point tenderness in the right lower quadrant with associated symptoms, you should be looking for appendicitis, right? It doesn't matter what the backstory is.
I think what becomes hard is exactly what we've been saying all along, is it's the patient with those diagnoses, with a whole list of those diagnoses, but there's not a timeline or a good story for how those diagnoses came to be. And then that all the actual testing, all the things that came along the way pointed in another direction, but those things are still considered to be the diagnosis.
Or they didn't take any of the recommendations to go into one of the pain programs that have been extremely successful in in helping patients with some of these conditions. And they said, no, I'm not interested in that. I'm not interested in that.
But they're interested in the most extreme treatment options or that it's the case that is the only one ever that didn't respond to X, Y, and Z. I mean, as we saw with CRPS,
The most common treatment is physical therapy, occupational therapy, psychotherapy, under the care of a pain medicine doctor to maybe use medications as you're going through those processes that might be painful for you versus you go to the biggest gun pain medicines before you've stepped up. you know, on all those other options along the way. So I don't think it's just the diagnosis.
I think it's the backstory and the whole story. But as a physician, it is really hard, and I've said this, to look into every patient's backstory. And I mean, I'm in pediatrics, so that means only to age 18. What about you get a 70-year-old with this list of diagnoses? How could you ever go through? And when they were younger, there weren't even electronic medical records, right?
So I'm at least in a little bit of a better place where a lot of what people have now is in the electronic medical record. But it's still difficult to go back and find where did all these come from. So I think my antenna or my kind of concerns start to go up when it is so many of these. And yet along the way, certain options haven't been pursued.
And then along the way, when other diagnoses were suggested, they were kind of denied by the family. And then that you can't even kind of follow that path to find how this all came to be. And that's when I start to not necessarily get worried about medical child abuse, but I start to kind of want to know more or at least want to dig more in those scenarios.
Yes. And I think seizures are one of those things that I've actually gone down the rabbit hole a little bit as well, because I have also questioned the whole idea of how much are the doctors culpable, right? And this I'm sure is a touchy subject for some physicians, but I will stand here, sit here and say that I have been complicit before because I didn't know, or I
it was too small of a story at that time, or they came with a G-tube and G-tube feeds, so I continued them, right? So I can honestly say I have been complicit. At the same time, when does that become a true problem? And I think that's the same as when does medical child abuse become more your concern from just...
anxious parent someone who comes in and wants to know if their child's having a seizure and you hook them up to what's called an EEG and they have one of the episodes that mom is concerned about and you can say on the EEG this is not a seizure and you can see this light like their their shoulders you know relax that this idea that I can sleep at night knowing this is not a seizure and
The thing is, some of these patients have been on multiple EEGs multiple times, and a seizure has never been caught. Then they go home, and they come back, and they report the worst seizure that ever happened. The patient turned blue. They had to give them CPR.
And so any physician who is hearing these stories is going to start saying, OK, so the EEG is normal, but the story they're telling me is a child who could die of a seizure at home. So when do I start medication? Right. I mean, because there are times where an EEG can look completely normal unless you capture the event.
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.
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