Crack the Case:
In a Bind: Applying A Gender Affirming Care Lens to a Complex Skin Lesion

July 28, 2023

Transcript

Dr. Angela Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the kid experts where the complex is our every day. Each week we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge, and perhaps change how you care for kids.

Welcome to Talking Pediatrics. I’m your host, Dr. Angela Kade Goepferd. On today’s Crack the Case with Dr. Bryan Fate, we learn about a transgender teenager presenting with pain out of proportion to what we would expect for some skin lesions. We have an opportunity to talk with Dr. Katy Miller about how to best care for teenagers in both this and all settings.

Dr. Bryan Fate: Welcome to Crack the Case where we dive into real cases seen at our Minneapolis Continuity Clinic to highlight medical decision-making, approaches to general pediatrics topics, and life in primary care. We’ll also incorporate music written by myself and friends at the end of every episode to highlight teaching points and hopefully engage the emotive side of your brain. I am Dr. Bryan Fate, a general pediatrician at our Minneapolis clinic. And with me today is Dr. Katy Miller, medical director for adolescent medicine and all around advocate for teens everywhere. Dr. Miller, it’s a treat, big fan.

Dr. Katy Miller: Thanks for having me.

Dr. Bryan Fate: And as an icebreaker for our listeners, what drew you to teenagers? Adolescent medicine is not for everyone. So what drew you to it?

Dr. Katy Miller: I just think they’re so much fun. There’s so much potential in that age group. You can really kind of make or break the trajectory of your life with teenagers in those teenage years. And truly they’re the most fun. I definitely have more fun than my other colleagues in clinic.

Dr. Bryan Fate: So with that said, our case will involve a teenager today and let’s start the case. So Katie, if you wanted to jump in to the case today, understand there’ll probably be two different parts. So just kind of starting out with the initial presentation.

Dr. Katy Miller: Absolutely. So initially this was a 17-year-old transgender patient who affirms a male gender identity and he was seen in the ED at Children’s Minnesota with really significant what looked like pressure ulcers from binding, so compressing his chest so that it was less visible. And at first it seemed like these were pressure ulcers just under his chest tissue, kind of around where the binder was. And they were getting progressively more painful, more red, more swollen, having some fevers initially, so was sent to the ED and eventually admitted inpatient for more evaluation, so cultures, getting some additional workup, trying to figure out what was going on with him. So he was treated with a couple rounds of antibiotics. Things seemed to maybe get a little bit better, but not a lot. He was discharged home after the antibiotics. What’s partially interesting about this case is that he had tried to access top surgery about a year or two earlier and had actually been denied top surgery.

So he has a history of Crohn’s disease and due to a combination of the fact that he was on a biologic and insurance coverage, he ended up not being able to access top surgery. And there’s a little bit of kind of back and forth of how much of that was insurance saying no and how much of it was the doctor being, well, we should wait until your Crohn’s is under better control. He didn’t really have any other medical conditions, the Crohn’s disease and some associated iron deficiency anemia and then these new chest wounds. So he goes home from his first hospital stay, not really feeling that much better, but they’re like, well, the antibiotics will probably kick in. However, he comes back within a few weeks and he’s completely miserable. It’s noted multiple times throughout the inpatient notes that he’s having pain disproportionate to the exams.

There’s a lot of mentions of his psychiatric state feeling really anxious, feeling really, really wound up about dressing changes, crying out loud, screaming with the dressing changes. And a lot of this is attributed to panic attacks. He gets actually a PCA for pain control. I think with morphine, maybe it’s Dilaudid, but that is discontinued because it’s not really a long-term plan. And I think there’s kind of a growing sense that maybe this was more related to anxiety than anything else. The discharge plan after talking to our gender health team, which I’m also a part of, was to follow up outpatient and the gender health team in adolescent medicine where I spend most of my time to see if there was something that we could do to find ways to help these wounds heal better. Wound clinic was involved, so they were doing regular pressure like dressing changes and then this outpatient plan with me.

Dr. Bryan Fate: So to summarize, 17 year old transgender male who has come in for really persistent ulcerations around the site of binding, has been denied thus far surgical intervention that was desired. So that is kind of what we are left with at this point and has had multiple rounds of antibiotics for presumed super infection of those pressure ulcers. So we can talk a little bit about the skin and soft tissue piece of it. So it doesn’t seem like things are getting better per se.

Dr. Katy Miller: Correct.

Dr. Bryan Fate: And with the history of Crohn’s, we also have to think about what immunosuppressive medicine we might be on. So if we have fungal coverage, if we need to cover for unusual, I guess more invasive things like pseudomonas, you mentioned pain out of proportion. So we also think about things like necrotizing soft tissue infections, which are very scary and every medical student knows about that, but that is that pain out of proportion, that evidence of crepitus, little rice Krispies under the skin of anaerobic bacteria, they’re trying to release gases upwards. So those are a few things that I think if it doesn’t seem like our coverage is adequate and then looking at what’s been cultured. So from an infection perspective, and also again thinking about could this be sepsis? What’s our blood pressure? If we’re having fevers, we’re a little bit worried that things have gone systemically, so making sure that we get full vital signs for that.

Also osteo, right on the bone, right on the sternum, that’s kind of scary. There’s a big bony prominence there. And so we would not want to miss something like osteo. And so thinking about further imaging too, which we would want to think about for necrotizing fasciitis too. But I also think there’s another interesting piece here that maybe a lot of physicians aren’t as familiar with is the practice of binding and how we can kind of more sensitively treat our transgender teenagers. And so out of the blue, Dr. Angela Goepferd has showed up in the room. What’s going on?

Dr. Angela Kade Goepferd: Hello colleagues.

Dr. Bryan Fate: Hi, Dr. Goepferd.

Dr. Angela Kade Goepferd: Hi, I’ve come in to be your gender consult today.

Dr. Bryan Fate: Fabulous, thank you. So Dr. Goepferd, I think can give us a little bit more perspective about the care that was given to this teenager in the hospital, maybe some of the things that broke down that could have been done better and just more knowledge for those out there that aren’t as familiar with the prospect of top surgery, what happens with binding things that are accompany with that.

Dr. Angela Kade Goepferd: So I actually did do an inpatient consult on this patient, so it’s not completely out of the blue that I showed up for this podcast, but just a little background on binding or chest binding. And Dr. Miller really gave some context for it, but it’s a practice by which I would say a body contouring practice by which people who have breast or chest tissue desire the appearance of a flatter chest. And some of them do want to eventually access surgery to have a completely flat chest and some don’t, but want to be able to use shape wear essentially to minimize chest appearance. And there are very safe ways to do that, but there are also very unsafe ways to do that.

So the first thing that we talk about with our transgender and gender diverse patients is nothing that is circumferentially wrapping the body. So we don’t want ACE wrap, we don’t want duct tape, we don’t want saran wrap. These are all things I’ve seen used, heard about being used. Nothing that would circumferentially sort of wrap around the body. One, it’s too restrictive to allow proper respiratory function, but also there’s a big nerve bundle called the brachial plexus that runs down the axilla and you don’t really want compression there, that can cause long-term damage. So we really want the bulk of the compression to be in the front of the chest allowing for flexibility of movement.

And so there are binders that are specifically designed to do that. So think about a sports bra, typically sports bras have this elastic band around the bottom that can be kind of tight. So where the compression is really all in the front but not really around the middle. And so what it does is compresses the breast or chest tissue flat while being elastic in the back and allowing movement and breathing and all of those things. So typically when we see kids who are interested in chest compression, we’ll steer them toward a product that’s specifically designed for that.

Dr. Bryan Fate: And was this… a product was appropriately like…

Dr. Angela Kade Goepferd: He was using a binder. A few issues depending on the size of someone’s chest and the size of their body, they may still get a lot of skin on skin friction, which I think was the case for this patient. But also depending on skin integrity and we don’t know for sure with this patient and he has some complications with being on immune suppressants, you really want to be sure to take good care of your skin. There’s also a product called Trans Tape where you can essentially use a kinesiology sort of type tape to tape your chest to the side. That can sometimes cause some damage to the skin itself.

I always tell families to wash the binders. A lot of kids will wear them several days without washing them and skin builds up in there and bacteria and can cause harm to skin integrity. So best practices would be a well fitting binder, one that you can move and breathe in and not experience pain with front compression that you’re binding for no more than eight to 10 hours a day, not sleeping in it and that you’re cleaning it regularly and paying attention to your skin.

Dr. Bryan Fate: Got it.

Dr. Angela Kade Goepferd: And Dr. Miller, I don’t remember other more specifics with this particular patient.

Dr. Katy Miller: He did have a lot of trouble with hygiene around his chest because he had so much dysphoria, just didn’t want to think about his chest. So wasn’t a fan of regular showers, which happens sometimes in trans kids who haven’t been able to access the care they need. So I think that that was probably contributing to some of the bacterial super infection.

Dr. Angela Kade Goepferd: And one other thing that really struck me about this patient when I went to see him was I was there when he had actually just been sort of in the shower and then was coming out to get some dressing changes and I both saw for myself how much discomfort he was in and heard his mom talk about just a complete change in his personality that before this came about, he was a pretty engaged young man, really for the most part enjoying life and had some hobbies and things like that. But really since this process started, he just really wasn’t himself. And I think, and I’d love to hear Dr. Miller’s take on this, there was some interpretation by the team that the mental health symptoms that he was experiencing may have been contributing to the pain. My take on it was that the pain was causing the worsening of the mental health.

Dr. Bryan Fate: Sure, yeah. Symptoms.

Dr. Angela Kade Goepferd: And Dr. Miller, as you said, work a lot with adolescents. So I’d love to hear your take on this adolescent with pain disproportionate to what we would expect and the interplay of mental health.

Dr. Katy Miller: I had a huge advantage that I haven’t disclosed until now in that when I was in my fellowship, I’d actually taken care of this patient previously, so I knew him from-

Dr. Bryan Fate: That’s helpful.

Dr. Katy Miller: … before his Crohn’s disease diagnosis, before he had this condition and he was this super happy chill kid who did guitar conferences at school assemblies in front of 900 people without breaking a sweat. So I knew he was this easygoing kid who was just kind of super happy and get along with everybody. So seeing the complete turnaround for me, that gave me a big advantage, having that history. And I think that’s one of the values of… it wasn’t primary care in this case because I’d seen him as a specialist previously, but having someone that has that longitudinal relationship is so helpful. But I do think that we see this all the time in patients and especially marginalized groups. So in this case it was a gender diverse youth, but often in kids of color, sometimes female patients where pain is considered to be exaggerated or related to mental health and mental health can absolutely impact pain. But I think we’re maybe a little bit too quick to make that assumption.

Dr. Bryan Fate: And as a person taking care of him, how worried were you Katy?

Dr. Katy Miller: Well, I knew he was coming. Dr. Goepferd had given me sign out about, okay, this patient’s going to come see you in adolescent clinic. When he got to clinic, I was pretty alarmed. His heart rate was 140. He was not febrile, his blood pressure wasn’t low, it was kind of in the normal range. But I was like, hey, why is your heart rate 140? So I’m thinking through like, okay, are you septic? Do I need to be worried about that? He’d recently had a bunch of cultures that had grown various bacteria like staph, enterococcus, he’d been treated with an antifungal once, but one culture had grown a fungal organism that wasn’t covered. So I’m just thinking big picture, a lot of the things you mentioned like is our antibiotic and antifungal coverage adequate? Do we need an MRI or a bone biopsy to rule out any osteomyelitis that’s spread?

So I’m thinking big picture. So I called ID, we restarted antibiotics, we added some antifungal coverage that would’ve been adequate and I said, “I want to see you back tomorrow.” So he went home for the night and the next day he actually had a dressing change scheduled. So he was getting that with the wound clinic and I said, “Hey, great, I’ve got a no-show, I’m going to run down to the wound clinic and see this dressing change,” because up until that point I hadn’t seen the wounds myself because it was so painful to take the dressings on and off. So I go to wound clinic and honestly it was frankly alarming how much pain he was in just kind of keening. It was almost animal-like. The only thing I can compare it to is when I used to do work in East Africa and there would be morphine shortages, but people would still need wound debridement if they had severe burns. That was the level of pain that he was in.

I’ve never heard that sound except in the burn clinic where I worked in East Africa and that wound clinic when that patient was getting his dressing changed. So that made me think, okay, we need a totally new approach. This is not working. Something’s really wrong. So at that point we got a lot more pain control on board. I don’t write oxycodone prescriptions hardly ever, and I gave him oxycodone. It’s like take this before dressing changes and before your physical therapy because I want you to be able to move. I gave him Lorazepam because he was so worked up about the dressing changes by that point. And I was like, don’t take them too close together, this is the maximum number of doses you can take in 24 hours, but we need better pain control. At that point, it was a Friday, we were still waiting for cultures to come back. I said, “If you are any worse, I want you to go to the emergency department this weekend.”

Dr. Bryan Fate: Yeah, I’m very impressed you did all this in one clinic day.

Dr. Katy Miller: I was running pretty late.

Dr. Bryan Fate: That’s a lot.

Dr. Katy Miller: As usual.

Dr. Angela Kade Goepferd: Dr. Miller is a bit of a superhero.

Dr. Katy Miller: I do run late though, so that’s a flaw.

Dr. Bryan Fate: Well, who doesn’t? But so you got to see the skin changes then.

Dr. Katy Miller: Yeah, and they were really impressive looking. So under his chest tissue there were just these ulcerated kind of painful looking oozing wounds and there was yellow puss, there was red, there wasn’t anything black that looked necrotic. There wasn’t any crepitus, but it was clearly painful and just looked kind of alarming.

Dr. Bryan Fate: I think that things we don’t understand as providers, if we’re less comfortable with things like chest binding, we tend to have a bias to steer away from that and not look at that thing that we don’t understand. So hopefully we’ll understand more today in terms of how to address things like this.

Dr. Angela Kade Goepferd: Yeah, and I would say I think anyone who’s seeing an adolescent wants to, as much as they can, respect that adolescent sort of for sure bodily autonomy and privacy. And as clinicians, there are times when we do have to do a complete head to toe exam. And I think the more for any teenager that you can explain why and what you’re doing, it helps. But I think especially with a transgender teenager, if they’re experiencing pain or burning or any kind of skin symptoms, you do need to look under their binder and they’re likely going to come in with it on. And so helping that be comfortable. I’m going to leave the room so you can take this off and here’s something you can cover yourself, giving them a lot of… it’s common practice for adults, but I think we often just expect kids to disrobe in front of us or take things off in front of us.

And so I think as much as we can give them some space to get comfortable, but still recognize that if they have symptoms related to their skin, we have to look at their skin and maybe even planning it. So to say, “I know you weren’t planning on this today and I feel like you’re getting really upset and I understand your anxiety about it. Let’s take a break today. I’d like you to come back tomorrow.” And then kind of knowing that this is what we’re going to do. So kind of helping set them up for success. But I agree, just avoidance because of our own discomfort is not good care.

Dr. Bryan Fate: I do think it’s something that we all do as physicians in many different areas.

Dr. Katy Miller: And teenagers do have the trump card. So I always give adolescent the option they have to consent to an exam. If they’re unable to consent to an exam, maybe we’re talking about getting sedation for that exam or we’re talking about treating empirically if we’re thinking about pelvic inflammatory disease and someone who just can’t do a pelvic exam. So I get consent for every exam I ever do. I explain what I’m going to do ahead of time. I say, does that sound okay? Is there anything you’d rather not do for every exam?

Dr. Bryan Fate: You did get a chance to look at the skin, Katy, it did not look probably any better. It looked bad.

Dr. Katy Miller: It looked pretty bad, yeah.

Dr. Bryan Fate: It sounded bad.

Dr. Katy Miller: So at that point I placed a referral to dermatology thinking let’s at least get skin biopsies. I was starting to try to coordinate a bone biopsy, but again, it was Friday afternoon. So we made the go to the emergency department if you need to.

Dr. Bryan Fate: So they went to derm, they got a biopsy.

Dr. Katy Miller: They actually didn’t make it that far. Saturday night, the pain was not adequately controlled with the oxycodone I had prescribed. So they did go to the ED as we had talked about, and they had the great fortune of being admitted with a med peds doc who knew exactly what it was. The med peds doc agreed that a derm referral was going to be really helpful and he thought that it was pyoderma gangrenosum, which is a rare skin condition that is autoimmune and does tend to run hand in hand often with inflammatory bowel disease. And it is often pain disproportionate to exam, ulcerating lesions that can sometimes be set off by some pressure or injury. But at this point it was just kind of its own inflammatory process that was going on and was exacerbated by the binding.

Dr. Bryan Fate: And then the treatment for that would be escalating the steroid and anti-inflammatory regimen.

Dr. Katy Miller: Yeah, so he was on Humira already for his Crohn’s and they ended up switching that to Stelara, which is a different monoclonal antibody. They added high dose cyclosporine, they added high dose steroids. So he’s pretty immune suppressed.

Dr. Bryan Fate: Sure. It seems like an infection so it seems counterintuitive to increase all of those immunosuppressants, but biopsy then Katy sounds like, I have actually not seen this, but I know a little bit about it. It’s biopsy showing, I guess neutrophilic predominance and I think it’s a diagnosis of exclusion so they’ve kind of looked at all these other things too. Did they ever do imaging or any deeper tissue imaging or no?

Dr. Katy Miller: We didn’t end up getting an MRI or CT scan just because I guess the appearance was so classic that derm felt like that with the biopsy was adequate to make the diagnosis. So he didn’t get imaging. His most recent round of cultures and everything that I had ordered in his blood cultures that I had requested all came back with just kind of skin contaminants. So then we felt pretty sure, okay, you’re not septic. His tachycardia was from his pain.

Dr. Angela Kade Goepferd: How did he do?

Dr. Katy Miller: You know what? He did amazing.

Dr. Bryan Fate: Good.

Dr. Katy Miller: So he also saw pain clinic. I was prescribing more oxycodone than I was comfortable with, which is really any amount of oxycodone. But pain clinic saw him and they were like, yeah, this is a perfect use for high doses of oxycodone. So they gave him an adequate supply and the family came back in tears. They were like so relieved. His mom said, “Thank God, I just know that now his pain will be adequately controlled. We have enough that he’ll be okay.” Yeah, he didn’t need any more Ativan after we got his pain under control, we didn’t even have to wean off of it.

That was just taken care of as soon as the oxycodone was appropriately dosed, which ended up being like 10 milligrams every four to six hours until things got under control from the steroids and the immunosuppressants. Now he’s doing awesome. He did a gap year to kind of figure out all of this health stuff, but he’s back to playing guitar. I saw him for a well check a few months ago. He’s doing amazing. He’s now scheduled to get top surgery so I’m hoping that that happens soon. And I think he’s pretty pumped for that too.

Dr. Bryan Fate: Fabulous. So diagnosis of Pyoderma Gangrenosum, a more unusual inflammatory kind of like ulcerated [inaudible 00:21:44] rash that can occur in the setting of any kind of inflammatory disease, which in this case was Crohn’s, but also ruling out causes of infection. Throwing it back to you, Dr. Goepferd, the inability to get top surgery was certainly something that contributed to this. So I was just hoping you could tell us a little bit more about when that can happen, what the process is for that and why it might have been so hard for our patient?

Dr. Angela Kade Goepferd: Just first and foremost, I think there’s a big misconception when we talk about gender-affirming care, that somehow surgery is a big part of that care. And the reality is that most transgender young people do not access surgery. Those who do tend to be 16, 17, 18 years old, and it’s about a half a percent or less of all transgender adolescents who would access a surgery like that. And there’s no genital type surgeries that are done in those under 18 years old. And it’s worth saying that even transgender adults don’t always access surgery. So it’s only some patients who have a desire to access surgery, but for those who do, the benefits are known to be quite good in terms of both their overall satisfaction with their bodies, their mental health, how they feel moving forward. And so what the World Professional Association for Transgender Health or WPATH recommends is that for young adults who are 16 years of age and older, that they can be evaluated on a case by case basis to see if having a chest or top surgery may be appropriate for them.

And in general, there does tend to be okay insurance coverage for that, but it really can vary state by state and provider by provider. So in this case, it sounds like certainly from a medical and probably mental health standpoint, it would’ve been great for this adolescent to be able to access the surgery when he was initially seeking it and probably could have prevented all of this for him. But I’m hopeful that it’s something that he’ll be able to access in the future and then hopefully not be at risk for having something like this happen again.

Dr. Bryan Fate: So thank you Dr. Miller and Dr. Goepferd for joining us again today. And Dr. Miller, is there a take home point that you’d like our audience to bring home? One or two maybe take home points?

Dr. Katy Miller: I think trust teenagers when they say they’re in pain, there’s no objective marker for pain. A heart rate of 140 comes pretty close, but there’s no objective marker. So we really need to trust what our patients are telling us with regard to pain and take it seriously because even patients who do have a psychiatric history can have very valid reasons for pain and are more likely to be dismissed.

Dr. Bryan Fate: Fabulous. Well thank you Dr. Goepferd for popping in as well.

Dr. Angela Kade Goepferd: Sure, anytime.

Dr. Bryan Fate: So until it’s time to crack another case, a musical number to engage the emotive side of your brain and hopefully tug at your heartstrings.

Speaker: (Singing).

Dr. Angela Kade Goepferd: Thank you for joining us for Talking Pediatrics. Come back each week for a new episode with our caregivers and experts in pediatric health. Our executive producer and showrunner is Ilze Vogel. Episodes are engineered, produced, and edited by Jake Beaver. Amie Juba is our marketing representative. For more information and additional episodes, visit us at childrensmn.org/talkingpediatrics, and to rate and review our show, please go to childrensmn.org/survey.