Helping Families Battle Rare Conditions

Transcript

WEBVTT

00:00:00.080 --> 00:00:10.351
You're never prepared for each case and each case really comes with you kind of like going in your mind, through the things that you want to say, how you want to approach it.

00:00:10.351 --> 00:00:18.530
I try, obviously, to be very empathetic, but at the same time, obviously I want to be I mean honest and bring out the facts.

00:00:21.800 --> 00:00:23.504
Hi, I'm Dr John Oden.

00:00:23.504 --> 00:00:28.893
This is Memoirs in Medicine, a podcast featuring the personal stories of healthcare professionals.

00:00:29.519 --> 00:00:30.685
And I'm Dr David Spiro.

00:00:30.685 --> 00:00:41.024
On each episode, one healthcare worker will share a moment from their career that has profoundly affected them and provide one suggestion, no matter how big or small, for improving the practice of medicine.

00:00:41.759 --> 00:00:47.771
Through storytelling, we hope to highlight the humanity of healthcare and create a space for candid and respectful discussion.

00:00:48.432 --> 00:00:49.774
To protect patient privacy.

00:00:49.774 --> 00:00:53.027
Some details may have been changed, but the stories are real.

00:00:53.027 --> 00:00:55.432
Welcome to Memoirs in Medicine.

00:00:55.432 --> 00:01:03.109
We're really excited to be here today.

00:01:03.109 --> 00:01:04.974
Today it's John's guest.

00:01:04.974 --> 00:01:10.706
I'm a little bit nervous because I don't know anything about endocrinology I'm an ER doctor.

00:01:10.706 --> 00:01:15.183
So, john, why don't you take it away and introduce our guest?

00:01:16.066 --> 00:01:16.628
I'm John Oden.

00:01:16.628 --> 00:01:18.433
I'm an endocrinologist in Arkansas.

00:01:18.433 --> 00:01:23.570
I have been working with Dr Mihio Taro for the past three years.

00:01:23.570 --> 00:01:29.186
He works primarily in the northwest sector of our state and has been doing a fantastic job.

00:01:29.186 --> 00:01:31.540
But prior to that, you know, nobody was really up there.

00:01:31.540 --> 00:01:38.762
But he has taken the ball and kind of started to direct you know, primary endocrinology almost by himself.

00:01:39.442 --> 00:01:43.468
So we invited him on this program because I think he has a pretty unique perspective.

00:01:43.468 --> 00:01:47.894
He's kind of a well-traveled guy and very bright.

00:01:47.894 --> 00:01:52.531
So, Dr Otero, we are here to listen to your story.

00:01:53.260 --> 00:01:54.605
Awesome, thank you for having me.

00:01:54.605 --> 00:01:56.250
Yeah, thank you for being here.

00:01:56.250 --> 00:02:05.180
So this is the story of a preschool boy that I happened to see in the hospital.

00:02:05.180 --> 00:02:31.270
He had been admitted for a few days of fatigue, some cachexia, just looking pale, not his usual self, definitely not wanting to do most of the things that he usually does, and his labs were showing a very low sodium, very high potassium, a very low blood sugar and a very low blood pressure.

00:02:31.270 --> 00:02:43.711
So he was admitted to the pediatric ICU and he was the only male sibling out of four kids.

00:02:43.711 --> 00:02:45.713
The other kids were girls.

00:02:45.713 --> 00:03:05.753
He had a family history of a maternal uncle who had had a similar presentation when his uncle was a kid and his uncle actually had passed away when he was, I believe, age 10 or 12 from complications.

00:03:07.662 --> 00:03:24.348
The patient, you know, as I said, was admitted to the pediatric ICU, was stabilized, electrolytes were corrected, blood sugar got better with the treatment, eventually was transferred to the floor, ended better and then went home.

00:03:24.348 --> 00:03:27.088
I followed him up as our patient.

00:03:27.088 --> 00:03:36.825
Basically, as you guys can already probably imagine for sure, this is screaming out loud that this is an adrenal problem.

00:03:36.825 --> 00:03:41.402
So we definitely started treatment for that and then, with treatment, he did better.

00:03:41.402 --> 00:03:57.288
But when he followed up with me, it was noted that he was having some imbalanced problems as well, was basically starting to um fall often, when he before was just a very skilled keto not really having any issues with that.

00:03:57.288 --> 00:04:00.061
So I happened to refer him to neurology.

00:04:00.061 --> 00:04:07.093
Um, neurology ended up recommending a brain MRI, and the brain MRI show multiple lesions as well.

00:04:07.719 --> 00:04:07.919
Yeah.

00:04:07.919 --> 00:04:11.949
So I have a few questions as the non endocrinologist here.

00:04:11.949 --> 00:04:26.146
So so when he first presented, his primary complaint was he seemed tired and he was thin and he was, he was vomiting, and that's sort of how he first showed up.

00:04:26.146 --> 00:04:29.004
He was otherwise a normal, healthy preschool boy.

00:04:29.004 --> 00:04:30.067
Is that right?

00:04:30.067 --> 00:04:34.666
That is right, yes, and what do you mean by lesions in the brain?

00:04:34.666 --> 00:04:40.990
Can you because there are a lot of people who are not physicians who are listening to this so he had lesions in the brain.

00:04:40.990 --> 00:04:42.922
What do you mean by that, if you can explain that?

00:04:42.922 --> 00:04:43.603
Yeah, absolutely.

00:04:44.204 --> 00:04:44.947
Absolutely so.

00:04:45.468 --> 00:04:54.021
When we're looking at the brain and we get imaging of the brain, we're going to see, obviously, the different structures, the different sort of like components of the brain.

00:04:54.702 --> 00:05:09.896
On the imaging, and depending on what part of the brain you're looking at, you're going to be looking at different colors and then you have like the normal colors that you expect certain part of the brain to look like in the imaging.

00:05:18.166 --> 00:05:27.314
Talking about a brain MRI, you will see areas that look grayish, black, whiter, a sort of like different color, different shape.

00:05:27.314 --> 00:06:26.535
Basically that may suggest that there is something wrong in that area, that there could be basically something going on either with the blood vessels, with the blood flow there, or with the cells in that area, area, so like if you find basically that something is out of the norm, as I said, for example, in this case from a, from a color standpoint, then you actually may may have found that the patient has some some sort of abnormality going there, which can be either inflammation, can be demyelination, which basically means like there is loss of the normal sort of like myelin that you, that you find in the brain, so like that's kind of like the normal pattern of cells in the in the brain so you can actually have you know issues with that, and that basically, I guess, is what we would call elation in the brain yeah, myelin is like um, at least the way I always think about it is like it's the insulation around a wire, correct?

00:06:27.600 --> 00:06:36.533
So when he showed up in clinic after this event and he was falling and having imbalance, I'm just curious was the family scared?

00:06:36.533 --> 00:06:37.355
Was he scared?

00:06:37.355 --> 00:06:38.485
What were they thinking?

00:06:38.485 --> 00:06:48.134
When families go to get imaging of the brain, the first thing they think of is, oh my gosh, my child may have cancer or something bad in the brain.

00:06:48.134 --> 00:06:52.721
So I'm just curious what you told them and was the family scared?

00:06:52.721 --> 00:06:58.173
And how are you dealing with sort of the psychosocial part of managing that?

00:06:59.339 --> 00:07:01.163
Absolutely, you're completely right.

00:07:01.163 --> 00:07:09.309
I think one of the first thoughts that families have when we talk about getting imaging off the brain is is, you know, having a brain tumor?

00:07:09.309 --> 00:07:13.526
You know it's, it's this basically going to be cancer?

00:07:13.526 --> 00:07:29.485
I think this is probably number one, and so there's always that sentiment obviously of significant fear and, you know, being very taken aback and kind of like what's going to be the result of the brain MRI.

00:07:29.485 --> 00:07:42.588
Just to give you a little bit more context, in this case one of the things that I was more concerned about is and just, I guess, to be able to connect all the dots so we can understand, I guess, why my rationale behind getting the brain MRI.

00:07:42.588 --> 00:07:56.309
So at that point I was basically suspecting that the kid has something called adrenal leukodystrophy, which basically had presented as an adrenal crisis and had led to the diagnosis of adrenal insufficiency.

00:07:56.309 --> 00:08:06.494
But some of these patients can basically have involvement not only of the adrenal glands but other organs, and the brain is one of them.

00:08:06.494 --> 00:08:41.033
There can be also potential affection of, like the gonads, for example, but in this case basically the neurologic symptoms were concerning to me because in the most severe form adrenal leukodystrophy can basically cause a neurodegenerative disease, so basically can cause abnormalities in the brain that lead to basically loss of the myelin, the cells, basically sort of like a progressive disease that compromises basically areas of the brain which can lead to it has a really bad prognosis, unfortunately.

00:08:41.033 --> 00:08:48.184
So in my mind I was like this kid is is, you know, presenting with this history of, you know, adrenal insufficiency.

00:08:48.645 --> 00:08:58.682
We had actually done the test for the most common cause of adrenal insufficiency at his age, which is typically addison's disease, and that test had actually come back negative.

00:08:58.682 --> 00:09:04.586
So we already knew that this was not the most common cause, which is addison's, which is an autoimmune disease.

00:09:04.586 --> 00:09:08.373
So in those cases the immune system attacks the adrenal glands.

00:09:08.373 --> 00:09:23.302
In this case it's basically genetic background genetic disease that basically leads to changes inside the cells in those organs, in those target organs that I was talking about, which basically leads to death of the cells.

00:09:23.302 --> 00:09:33.700
And, as I was saying, my major concern was that if he was already showing brain lesions, the prognosis is pretty bad, unfortunately.

00:09:33.700 --> 00:09:39.873
So I was already even myself thinking this doesn't look good.

00:09:39.873 --> 00:09:47.043
Obviously, I needed to wait for the results of the brain MRI and unfortunately he did show lesions in his brain.

00:09:47.043 --> 00:09:55.952
So at that point the next step is typically to send them to see the neurologist, the specialist of the brain, and they take care of that part.

00:09:55.952 --> 00:10:00.210
But yeah, family obviously was devastated with the news.

00:10:01.761 --> 00:10:09.243
And I imagine you had mentioned that the mother's brother or the maternal uncle passed away at the age of 10 or 12.

00:10:09.243 --> 00:10:15.682
And I'm imagining, as this process was going on, the mother was probably thinking about that.

00:10:16.445 --> 00:10:17.166
That is correct.

00:10:17.166 --> 00:10:22.447
Yes, they were already obviously suspecting that something like that is going on.

00:10:22.447 --> 00:10:35.106
They had been told that you know that family history and obviously, with the diagnosis, that there could be a significant possibility that that's what the little kid was also going to have.

00:10:35.106 --> 00:10:42.731
So, yeah, for sure it was something that she, she hoped she would never, you know, had to deal with or heard of.

00:10:42.851 --> 00:10:48.206
but, um, you know, unfortunately that was what happened and and is it a terminal diagnosis?

00:10:48.206 --> 00:10:51.212
Ultimately, will the will the patient pass away from this?

00:10:52.000 --> 00:10:54.726
so the answer is probably yes.

00:10:54.726 --> 00:11:07.774
The reason I say probably is because there is the possibility of doing bone marrow transplant if you are able to actually diagnose them or the phase before there is neurologic involvement.

00:11:07.774 --> 00:11:27.322
But once you see brain lesions, unfortunately the disease is severe enough that it just progresses to eventually leading to significant neurologic compromise and these kids typically end up, unfortunately, bed bound with trach, g-tube and then eventually passed away from complications of that.

00:11:27.322 --> 00:11:49.294
So but yes, I mean in some cases there actually has been significant improvement in reported cases, sometimes even of basically slowing down neurologic development, if you're able to again start or do the bone marrow transplant before the lesions are actually of use on the brain MRI.

00:11:49.294 --> 00:11:57.825
But again, unfortunately, once you have very clear lesions there, the likelihood of bone marrow transplant working is pretty low.

00:11:58.345 --> 00:12:03.437
Yeah, one point I want to make, though I mean I think he brings a great case to make.

00:12:03.437 --> 00:12:11.399
This point is that endocrinology is well dependent to some degree on some critical pieces in our hospital.

00:12:11.399 --> 00:12:26.650
One is radiology, the other one is ICU, and it's incumbent upon all of us to make sure that that relationship is well-educated and streamlined, and sometimes that can be hard, for example with Juan's patient.

00:12:26.650 --> 00:12:28.976
It's not a simple case at all.

00:12:28.976 --> 00:12:35.231
Adrenal leukodystrophy is probably one of the most complex cases that we see and certainly most heart-wrenching.

00:12:36.004 --> 00:13:11.014
But in cases like growth hormone deficiency or panhypopituitarism, where kids have a lot of hormone deficiencies and we rely on radiologists to give us a very specific and clear read of an MRI and although Dr Otero really explained MRIs very well, reading an MRI and interpreting a radiologist's read of an MRI and interpretation of an MRI is sometimes very difficult, especially if they find little slight abnormalities that a parent can look at and read and go, oh my goodness, my kiddo has this, when in fact it's just a normal variant.

00:13:11.014 --> 00:13:16.317
And unless an MRI read says normal MRI, I would have the same concerns.

00:13:16.317 --> 00:13:18.711
Now, icus are the same way.

00:13:18.711 --> 00:13:22.756
We really need to be able to communicate with these people, make sure they have the right perspective.

00:13:22.756 --> 00:13:24.711
At least we have the right perspective from them too.

00:13:24.711 --> 00:13:37.837
So I just want to make the point that, even though endocrinology is complex and it's hard and it requires the help of emergency room David, picu, radiology all those people are very critical to what we do.

00:13:38.784 --> 00:13:57.394
Yeah, I want to focus just for a bit in your specialty because obviously I'm a children's ER doctor and the other day I had an endocrinology case of a type 1 diabetic who came in new onset to the ER, which is a common thing that comes to the emergency department.

00:13:57.534 --> 00:14:05.870
We manage that, and the first thing the families think about when their child is first diagnosed with type 1 diabetes is is my child going to die?

00:14:05.870 --> 00:14:21.033
Because they've gone from what they perceive as a completely healthy child, like in this case, to a pretty significant lifestyle change where they're going to be giving insulin with a new onset diabetic.

00:14:21.033 --> 00:14:26.726
In this case, however, be giving insulin with a new onset diabetic.

00:14:26.726 --> 00:14:35.668
In this case, however, dr Otero, you are actually making a diagnosis that actually is likely terminal, so I want to know how you talk to this family about that especially.

00:14:35.668 --> 00:14:45.061
This mother went through the grief of losing a brother to this disease and then now her child has this.

00:14:45.061 --> 00:14:52.832
How did you approach the family, how did you talk to them, how did they react and what kind of support did you give to the family?

00:14:53.374 --> 00:14:55.077
Sure, yeah, never easy.

00:14:55.077 --> 00:15:07.432
You're never prepared for each case and each case really comes with, just basically, you kind of like going in your mind through the things that you want to say, how you want to approach it.

00:15:07.432 --> 00:15:20.471
I try, obviously to be very empathetic but at the same time obviously I want to be I mean honest and bring out the facts and be thorough and explain what can happen in all of that.

00:15:20.471 --> 00:15:21.913
But again, yeah, it's never easy.

00:15:21.913 --> 00:15:37.807
The way that I typically like to approach these cases is I try to go, you know, from the biology, to like the clinical side of things, kind of like explain them in you know as much simple language as I can, but explain them what's happening you know from.

00:15:37.807 --> 00:15:52.768
You know from a very minute standpoint, so from a cell standpoint, to like the symptoms and then what is expected to happen long term, meaning like, what do we know from all the years dealing with this type of diagnosis?

00:15:52.768 --> 00:15:56.375
What do we know that happens to patients over time?

00:15:56.616 --> 00:15:59.797
You know we do have to talk about like is there a cure or not?

00:15:59.797 --> 00:16:02.796
Is there something that we can do to, for example, slow down the progression or not?

00:16:02.796 --> 00:16:03.264
What needs to be done?

00:16:03.264 --> 00:16:03.607
There something that we can do to, for example, slow down the progression or not?

00:16:03.607 --> 00:16:06.134
What needs to be done to keep them healthy?

00:16:06.445 --> 00:16:10.456
Why is, for example, treating the adrenal insufficiency so important?

00:16:10.456 --> 00:16:13.245
Because that, by in itself, is a life-threatening disease.

00:16:13.245 --> 00:16:19.191
So why, obviously, addressing that part and keeping that part in tune it's so important.

00:16:19.191 --> 00:16:56.793
But, yeah, I mean, I feel like for us in medicine it's always going to be hard to talk about this terminal diagnosis, because obviously you know that death is basically part of the outcome in this, some of these conditions, and you know it's never really easy to talk about death, and especially, obviously, when you're talking to parents addressing that as a possibility or as an expected outcome, it's like you know, even if you feel like you're saying the right words, you know it can be a whole universe of how they feel about it, how they react about it, how they interpret what you're telling them.

00:16:57.666 --> 00:17:00.033
And how did the family react when you gave them the news?

00:17:00.033 --> 00:17:01.429
This family.

00:17:01.832 --> 00:17:04.406
I feel like for them there was a little bit of mixed feelings.

00:17:04.507 --> 00:17:08.798
Obviously, they were understanding that the prognosis was pretty bad.

00:17:09.404 --> 00:17:30.226
I feel like, as you were saying, for example, for mom knowing that she had lost her brother, it was kind of like not necessarily a surprise in the sense that, like now, after talking about the diagnosis and talking about, like the expected outcomes, what can happen, she sense that, like now, after talking about the diagnosis and talking about, like the expected outcomes, what can happen, she kind of like now understood that that is probably what's going to come.

00:17:30.846 --> 00:17:43.573
But you can definitely see in her face that, you know, this was obviously, you know, a very, yeah, a very emotional moment again of just like okay, this is going to happen again for sure.

00:17:43.573 --> 00:17:53.886
I feel like both parents were trying to be strong for their kids in that moment and not necessarily show them a lot of weakness, but you can definitely see that there was a lot of fear in their face.

00:17:53.886 --> 00:18:00.730
But I remember that actually all the other sisters were there as well and the sisters are all also pediatric age.

00:18:00.730 --> 00:18:07.794
So I think the parents were trying to in some way keep it together so that they would like show them some strength at that moment.

00:18:08.164 --> 00:18:10.933
Were you thinking about adrenal leukodystrophy when you first saw them?

00:18:10.933 --> 00:18:16.698
I mean, in the case that you were presenting, I was thinking at least CAH congenital adrenal hyperplasia.

00:18:17.164 --> 00:18:37.314
Yeah, I think that the age this kid was preschool, more kind of like four or five years of age, and then when they told me about the family history, when they told me about the maternal uncle that had had similar presentation and died young, that's when I started thinking about it.

00:18:37.314 --> 00:18:39.298
I typically, as I said, you know, I think of other diagnosis.

00:18:39.298 --> 00:18:42.265
Maybe for this age group I would think Addison's disease.

00:18:42.265 --> 00:18:44.183
But once I heard about the family history, I started thinking about that, for maybe for this age group I would think addison's disease.

00:18:44.183 --> 00:18:49.164
But but once they, once I hear about the, the family history, I started thinking about that I think it was becky latch.

00:18:49.384 --> 00:18:49.566
I was.

00:18:49.566 --> 00:19:00.986
I was talking to becky latch not too long ago and she it was a group of us, and so she said something that was very, very real for me is she said medicine is very messy, you know, and it it really.

00:19:00.986 --> 00:19:12.465
It really is because in a lot of TV shows, a lot of our books, it kind of goes through these cases and it goes through all the symptoms and signs of specific diseases.

00:19:12.465 --> 00:19:20.534
And you know, if you're in a chapter of blood sugar problems and the kiddo comes in with signs of diabetes, you're going to think right about type 1 diabetes.

00:19:20.534 --> 00:19:22.366
That's exactly what you're thinking of as a doctor.

00:19:22.949 --> 00:19:31.654
But in the case where you're in an emergency room and a kid comes in and they're tired, right, you're not going to be really thinking about adrenal leukodystrophy.

00:19:31.654 --> 00:19:33.151
That's not the first thing that happens.

00:19:33.151 --> 00:19:44.698
And certainly I mean, even if we do have evidence of adrenal insufficiency, which is part of adrenal leukodystrophy we're going to be thinking of the more common things, like you said, like Addison's disease, congenital adrenal hyperplasia.

00:19:44.698 --> 00:20:02.071
Maybe he had steroids months ago and now he's adrenally insufficient because of things that the medications he was on Sure great, but see, that's what makes medicine very messy and sometimes it affects the way families trust us and look at us because they're expecting an answer right there.

00:20:02.633 --> 00:20:04.797
Yes, my child has adrenal insufficiency.

00:20:04.797 --> 00:20:05.598
But what does that mean?

00:20:05.598 --> 00:20:16.394
And I've been in Juan's position many times and you're like, well, we'll treat him, we'll make sure things are going well, but the exact cause we don't really know yet.

00:20:16.394 --> 00:20:32.490
And so a month later, when you have all your information, or at least you're kind of going down that road question mark, you know some families may lose sight of that and they may lose a little bit of trust in that individual.

00:20:32.490 --> 00:20:34.976
And you know you can see it in the family's eyes.

00:20:34.976 --> 00:20:43.625
And when you're talking to them and you're saying things like very directly, this is what it is, this is what it means they're looking at you like why didn't you tell me this before?

00:20:45.650 --> 00:20:46.672
Well, I'm curious.

00:20:46.672 --> 00:21:07.074
So when you give bad news like that that must affect you, Juan, and when you have a day like that where you're giving bad news to a family, especially bad news around terminal illness, where a child will perhaps die from that disease, how do you take care of yourself?

00:21:07.074 --> 00:21:14.114
Like, what do you do to take care of yourself after a really difficult day like that?

00:21:15.395 --> 00:21:24.309
Yeah, for me, my main avenue to take care of myself in those days usually is exercise.

00:21:24.309 --> 00:21:41.935
I feel like for me, exercise is the way that I deal with stress and that I can kind of like get some time for myself where I can like disconnect from the things that happen in the day, happen in the day.

00:21:41.935 --> 00:21:46.567
So for me, exercise has been a huge part of, you know, kind of like keeping my mental health in shape, especially in, you know, in this field.

00:21:46.567 --> 00:21:47.550
That is definitely so.

00:21:47.550 --> 00:22:04.911
We are so prone to actually, you know, go through so different emotions because of what we're talking, how we have to deal with diagnosis that can be, you know, devastating and having to also deal with emotions from the families, emotions from the patient.

00:22:05.315 --> 00:22:10.555
So for me, what really works is that I try to just go do my exercise routine.

00:22:10.555 --> 00:22:15.126
I like CrossFit, so I'm usually you can usually find me in the CrossFit gym after work.

00:22:15.126 --> 00:22:21.400
So that's what I'm going to do usually to try to decompress and try to disconnect some time.

00:22:21.400 --> 00:22:22.881
I like meditation as well.

00:22:22.881 --> 00:22:28.766
So sometimes, if it's been a really stressful day, I will just like to dedicate some time for meditation.

00:22:28.766 --> 00:22:31.248
Those are probably my two biggest things.

00:22:31.248 --> 00:22:37.051
But yeah, I mean it's definitely a burden in our mood, in our emotions.

00:22:37.051 --> 00:22:40.816
So very important for us to take care of that, especially in those days.

00:22:41.458 --> 00:22:41.818
Yeah, we've.

00:22:41.818 --> 00:22:51.285
We talked the other day as a group ourselves in the ER about how we handle ourselves after we have a devastating event in the ER and have to still see patients.

00:22:51.285 --> 00:23:05.849
And I'm assuming in endocrinology clinic you're busy seeing patients and this may not be the last patient of the day and so you have to go from this room, where you've delivered really bad news, to another room and it's the new patient.

00:23:05.849 --> 00:23:17.565
So those can be really challenging days for us as physicians, where we sort of have to go on with our day being a doctor but have been emotionally yeah, well, it's, it's.

00:23:17.664 --> 00:23:18.928
I'm sorry, it's not just the.

00:23:18.928 --> 00:23:22.478
You know emotionally, yeah, well, it's, it's, I'm sorry, it's not just the.

00:23:22.478 --> 00:23:42.786
You know that kind of emotional stress that really hits me, um, although it, you know, if I have a kiddo like that, especially if there's any kind of skips in diagnosis or delay and kind of thought process of what x could be or what they're presenting with, but it's also the, the communication back and forth with families that we're now so prone to with our electronic medical records.

00:23:42.786 --> 00:23:54.615
You know families can send us notes and send us ideas and thoughts and questions, and you know criticisms about what we do, and a lot of that, I think, weighs heavily on us if we're seeing that on a daily basis.

00:23:54.615 --> 00:23:58.619
Like you know, hey, my kiddo is not feeling well, why can't you help me?

00:23:58.619 --> 00:24:03.446
We've talked about this before and you know we do our best and sometimes our best is not good enough.

00:24:04.557 --> 00:24:05.298
Yeah, Dr Otero.

00:24:05.298 --> 00:24:12.080
What would you say would be the one or two teaching points after our discussion today that you'd like to give to our audience?

00:24:12.080 --> 00:24:16.901
How do you distill this down into a thought or two that could wrap it up Absolutely?

00:24:17.742 --> 00:24:39.326
I would say, probably teaching point number one always ask yourself more questions, always assume you, even though common things are common, always assume that there can also be the uncommon things in front of you and that you definitely should not miss the important points from the history, from the physical.

00:24:41.255 --> 00:24:50.586
Again, one lesson that I learned is that, in this particular story, family history was so, so important to make me think about what ended up being the diagnosis.

00:24:50.586 --> 00:24:54.236
So definitely, as I said, always ask yourself extra questions.

00:24:54.236 --> 00:25:21.150
In teaching Point number two, when dealing with this type of diagnosis that can be, you know, terminal, I would say definitely try to be empathetic, try to, you know, do your best to be there for the family, obviously not only as a support from a medical standpoint, but also try to be there for them through, you know, those really difficult times.

00:25:21.150 --> 00:25:45.346
And I would say, probably teaching point number three, that would be an extra bonus there would be, as you said, I think, important for us as physicians to take care of ourselves, to take care of our mental health, of our physical health, especially because we definitely are, you know, because we definitely are exposed to sad and happiness, all the spectrum of the emotions in humans.

00:25:45.346 --> 00:25:50.551
So it's important for us to remember that we're humans too, and that it is important to take care of us as well.

00:25:52.055 --> 00:25:52.717
Yeah, I agree with that.

00:25:52.717 --> 00:26:01.135
Well, I'll tell you, we haven't met before Dr Otero, but I think that you're an outstanding physician, Dr Otero.

00:26:01.135 --> 00:26:12.228
But I think that you're an outstanding physician and the way you've approached this and your empathy and your compassion comes out in the way that we talk today, and I think Arkansas Children's and UAMS are very lucky to have you as a part of their faculty.

00:26:13.376 --> 00:26:14.080
I appreciate it.

00:26:14.516 --> 00:26:17.787
I'm really honored to meet you, Like I really am honored to meet you today.

00:26:17.894 --> 00:26:18.419
Yeah, I am very, very nice meeting you too.

00:26:18.419 --> 00:26:19.023
Yeah, and you can actually come to the ER.

00:26:18.983 --> 00:26:19.509
I would be happy to meet you like I really am.

00:26:19.509 --> 00:26:19.631
Oh, thank you.

00:26:19.631 --> 00:26:20.256
Today, yeah, I am very, very nice meeting you too.

00:26:20.256 --> 00:26:24.934
Yeah, and you, you can actually come to the er, I, I would be happy to see you so you can?

00:26:24.934 --> 00:26:32.523
You can come in I usually don't like endocrinologists in the er because uh well you guys are all you're too smart.

00:26:32.544 --> 00:26:33.268
That's the problem.

00:26:33.268 --> 00:26:34.071
That's the problem.

00:26:34.092 --> 00:26:41.914
Come in there and tell you yeah, you tell us what to do yeah, you tell us what to do like I will come and say hi john, do you have any other?

00:26:42.055 --> 00:26:43.859
last thoughts or comments.

00:26:43.859 --> 00:26:45.063
No, I think you know those.

00:26:45.063 --> 00:26:46.787
As usual we come up with.

00:26:46.787 --> 00:26:48.238
You know these, these stories that we hear.

00:26:48.257 --> 00:27:02.728
You know they bring up all the facets of medicine and I think it's it's good to go through things like making sure that that that physicians take care of their mental and physical health, especially in light of of these very challenging diagnoses.

00:27:02.728 --> 00:27:28.047
I don't want to take away from the grief and loss of something like this from the family, because certainly that's priority number one, but they do weigh on us, they do weigh on physicians and in the outpatient world and inpatient world I hate to say it like this, but we see this almost every day Kids who are not taking care of themselves or can't take care of themselves or have an overwhelming diagnosis that's really challenging to take care of.

00:27:28.047 --> 00:27:43.648
We see this every day and I think Dr Otero's advice to you know make sure to take a step back, realize that medicine is messy and that we do the best that we can and in the end, it's all about making sure kids are covered and taken care of and we can only do that if we're in the moment.

00:27:44.694 --> 00:27:45.636
Correct.

00:27:45.636 --> 00:27:56.778
I guess the one like higher level teaching point I wanted to add around this case is that obviously you're an amazing physician and you made a very unusual diagnosis, but it's not always about the diagnosis.

00:27:56.778 --> 00:28:00.626
Caring for the patient is not about the diagnosis all the time.

00:28:00.626 --> 00:28:05.903
It's also about how we deliver information and how we support the families we care for.

00:28:05.903 --> 00:28:20.105
I think that is something that is oftentimes missed, especially with young trainees and, you know, making sure that the entire family is cared for in a way that is supportive through the diagnosis of various diseases that we make.

00:28:20.896 --> 00:28:22.190
Thank you so much for joining us.

00:28:22.493 --> 00:28:24.221
Yeah, thank you, guys for inviting me.

00:28:30.395 --> 00:28:33.905
Visit memoirsinmedicinecom to learn more about this program.

00:28:33.905 --> 00:28:37.025
Sign up for our newsletter or leave us a voicemail.

00:28:37.025 --> 00:28:39.967
That's memoirsinmedicinecom.

00:28:39.967 --> 00:28:49.519
Subscribe on Apple Podcasts, spotify or in other major podcasting apps so you can have episodes delivered to you automatically on the day they're released.

00:28:49.519 --> 00:28:51.506
Till next time.

Helping Families Battle Rare Conditions

Listen On

Recent Episodes