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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And, you know, if we have a kid who lays in the hospital with pneumonia with, I mean, we know it from COVID, you get deconditioned over time just laying in a hospital bed from any illness. And kids have to go to our, you know, rehab unit to physically rehab just after being sick in the ICU because your body weakens. So if someone is more sanitary due to all of these symptoms,
By definition, getting up at that point is going to be harder. And so you wonder, once someone is healthy, is it even going to be as much of an issue or an issue?
Right. And pain medications, you know, do certain ones drop your blood pressure. And then again, you're more prone to those positional changes whenever you're on those medications. I mean, you know, most people will tell you they feel a little bit woozy or dizzy when they're taking certain medications. And
So at this point, we are in August of 2018, and she gets admitted to Kaiser Permanente San Diego. It does not specify anywhere if we're still looking at shoulder, if it's her whole body. I can say there are pictures of her where she is in a motorized wheelchair. I do not know if that is true as of admission to Kaiser. But she also is now presenting with GI symptoms. And...
unable to eat and this is kind of that progression that I do start to worry not only about things like Munchausen by proxy or anything like that but I start to worry when the pattern is certain neurologic symptoms followed by certain GI symptoms or certain GI symptoms followed by neurologic symptoms because there is so much interplay between our nervous system and our GI system and
And once you're affecting both, it just means it's going to be more life affecting for these children. And often once the GI system is involved, this is when things like tubes and central lines become even more, kind of more that the child becomes at risk of needing these things.
And so you're wondering, my biggest thing in all of this right now is where in the story does intervention happen to try to be realistic and have a realistic plan of care and a realistic goal for a family, for a patient, all of them that kind of keeps the escalation in check because you can kind of already feel it starting to escalate at the beginning of this admission.
She's already now been two years with this debilitating, you know, kind of unrelenting pain. And now we're starting to have GI side effects or GI symptoms as well, which Andrea and I know is often a side effect of medications too. So the question is, did we iatrogenically or did the physicians cause this by medication she was on?
Or is this a second symptom, third symptom, whatever you want to say of this overarching story?
Well, I can start with POTS. POTS itself does not have GI connections. The idea is the reason tubes and central lines sometimes come into the picture is more of the need for a hydration and hydration status above and beyond maybe what another person would need to drink in a day. And so whether they are able to take all of that by mouth or not, are unable to.
And then that's how that door is open into the world of tubes and lines with Ehlers-Danlos. I did a little digging because again, Ehlers-Danlos is often something in pediatrics or in medicine that is a secondary diagnosis, something that you may know the child has, but isn't necessarily the reason they're at least with me in the hospital.
But we do always consider those secondary and third diagnoses as, is this playing a role? So it does seem like kids with Ehlers-Danlos, um,
which the idea is that they have hypermobile joints so their joints are very kind of floppy but because of that the rest of their body is overcompensating for their they're always trying to balance their joints and the thing is if your joints are floppy or loose then there's ideas that like your pelvic floor is loose which affects your abdominal motility or your gi motility um
like your chest between your ribs, everything are affected. Are you more at risk for like getting a bad pneumonia or something like that? And so I think it's all this stuff that is known to be associated. So a lot of these kids have maybe slow GI motility, constipation, things that we see in a lot of kids for a lot of different reasons. It just, again, it's the extremes of it.
So it's the fact that Ehlers-Danlos syndrome in and of itself does not cause kids to need a tube or need a central line. It may be contributing to some of the symptoms, but these are symptoms that can be managed many other ways.
It's one of those diagnoses that is much more prevalent than anyone knows. A little funny side story is that I have a colleague who consistently tells me I have Ehlers-Danlos. It is like a running joke at the hospital. Like, oh, you know, Bex, you know, you have Ehlers-Danlos. Ha ha ha. You know what I mean?
And it's because of how I sit and how I position and the fact that I can contort into strange positions. And then when I get a massage, he's like, dang, what are your muscles doing all day? And I'm like, probably balancing my hypermobile joints. So again, but I think the point is, I think it is much more prevalent than what is reported because I think people do just live with Ehlers-Danlos.
There are, just as a total aside, is there are types of Ehlers-Danlos that are vascular types of Ehlers-Danlos. That's when you get into them having cardiac issues and actual problems because the muscles of the blood vessel walls are affected. And so that you can imagine has a lot more medical consequences.
The hypermobile type of Ehlers-Danlos is anywhere from you can position yourself in a little bit of weird positions to causing significant full body pain. I think the point is, as we have talked about many times, is there are people that truly suffer and are debilitated by things like CRPS, by things like chronic pain.
And I'm sure there is a subset of Ehlers-Danlos that is more severe, and maybe someday we will have a gene or something else that can diagnose that. But the point is when... The pieces of the story just start lining up in a certain way. And Ehlers-Danlos is kind of mentioned or comes out. And then there's just this rapid decline in a child that was otherwise thriving for all intents and purposes.
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