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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I mean, that's two completely different things.
Oh, so much.
I have so many little comments. But I think the other big thing is they recommend to families to bring medical records with you to the appointment. Bring all the medical records that confirm the diagnosis. Yes. That worries me as well.
So if you are only bringing the ones that confirm it, but you're not bringing the 10 doctor's notes that said they think it's something else, you are not bringing the whole story. I mean, the saying they have it is not necessarily the right answer. Again, it's saying there could be a test that was False.
For instance, kids sometimes get stool tests when they're or tests of their poop when they're doing a clean out. So they're like getting a bunch of medicines to help them poop. If you run a stool test on that poop, it's going to be different than on a day when you're just having your regular poop. I can't believe I'm saying this so much.
But at the same time, if you've done that test once and it was positive, but then they're like, wait. They were on all these medicines. Let's confirm it. And then you do two confirmatory tests and those are negative. Should you only bring the one that said it was right?
So they're almost telling them, choose your story, like go back through and find only the papers that say what you want them to say. And I think that's inappropriate in the world of electronic medical records. The idea is we can see everything. All of them. And again, you may still come to the conclusion.
Right. And they say, you know, sometimes parents have to mislead medical professionals, but they harbored no intent of harming anybody. That doesn't compute to me.
I mean, again, I want to know the story. And if a parent is concerned, I want them to tell me what they're concerned about. I don't want them to make up a story to get me there, right? I want them to say, this is what happened. But I watched a movie where a kid had something very similar and he had a brain tumor. I'm scared, right?
Because I can have that conversation and maybe we can talk and I can come up with a way to explain why I think this situation is different. But at the end of the day, that parent... I can talk to and I feel like I'm not set up to already fail or to be told.
It says here, it says a parent may state to a Mito specialist that child is having seizures, but a subsequent conversation between the specialist and the neurologist indicates she's not. Or a patient may represent that the gastroenterologist instructed them to go off a medication when that was not the case.
Such misrepresentation is done with no intent to cause harm to themselves or their child, but it is misrepresentation nonetheless and has a strong impact on the family and the relationship with providers. And then these can come back to haunt you if you're ever accused of medical child abuse.
Like I said, I'm trying to put myself in the mindset of I really do have a child that was diagnosed with, let's say, Milos, one of the mitochondrial diseases that I do know a lot about, one of these genetic conditions. And I want help because I'm scared. And this is where I go.
Like, I just think it sets up the medical profession to already they're going to be doubting us and it's going to already impact that relationship. I mean, they right off the bat tell you who in the hospital is a mandated reporter. So, you know, to make sure you be careful.
And they say an offhand comment or a venting session can easily be misinterpreted by someone who maintains this professional obligation and may lead to an investigation by Child Protective Services.
And even getting it to the point of investigation, I agree. I mean, there's a person on a hotline or a person reading your report online that is not medical at all, has no background, and is probably scared because of everything that is happening in the world right now, especially in Florida.
And it has to even get past them before it even would get to the people who may understand it a little bit better. So these things are getting closed before they've even started. And I think... The other thing is this website, one of their sentences, hospitals are often too quick to separate children from parents suspected of medical child abuse.
Courts do that.
I know. It's just it's setting us up to fail.
Is it, Bex? It's linked to it multiple times. It's linked to this.
Showing 441–460 of 498 · page 23 of 25
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