Melanie Cole, MS (Host): Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole, and today we're highlighting weight management in pediatric patients with special needs. Joining me is Dr. Anton Dietzen. He's a diplomat of the American Board of Obesity Medicine and a fellowship trained pediatric physiatrist at Northwestern Medicine's Marion Joy Rehabilitation Hospital.

Dr. Dietzen, thank you so much for joining us. As we get into this topic, I'd like you to first speak about the prevalence. How common are weight issues within the pediatric population for children with special needs?

Dr. Anton Dietzen: Hi Melanie, thank you so much for having me. This is such an important topic and one I'm really passionate about. you know, we know over 14 million youth are affected by obesity in the United States and it's now the most common pediatric chronic disease. and children with disabilities are, at even increased risk with a 30 to 50 percent increased likelihood to be obese over their typically developing peers.

And we estimate between, a quarter and a third of patients with special needs, are suffering from overweight or obesity.

Melanie Cole, MS: Well, that leads well into my next question. Why is it particularly challenging for pediatric patients with special needs to maintain their weight? What are some of the most common barriers to weight management in these kiddos?

Dr. Anton Dietzen: it's really multifactorial. One of the big players that we see really commonly is history of medications that are weight-positive or weight-promoting. And so, in a lot of our patients that are neuroatypical, maybe with autism and things like that, sometimes we're using certain medicines that have weight-promoting effects to manage behavior and mood and things like that. And those can initiate the process of excessive weight gain. You know, a lot of times food, you know, in these patients can be really challenging, especially when they're young. A lot of patients, it's difficult to get them enough calories. And so, the focus for so long has been on trying to ensure adequate nutrition. And in the process of that, we develop habits and strategies that, as their metabolism kind of slows or medications affect things over time, now we're eating maybe in front of the tablet or in front of the TV or we're using food for a reward or to help modify behavior in a certain way to keep a child happy or occupied and things like that. And so, those same strategies that at a certain time, a development can be useful, and the right thing to do then over time can lead to excessive weight gain.

Melanie Cole, MS: You mentioned that it takes a bit of tact when dealing with families and helping them to understand the implications of weight management. How do you help parents and caregivers navigate these challenges when we're speaking about the potential long-term health implications of untreated or poorly managed weight issues in children that do have special needs, Dr. Dietzen? And I have a passion for childhood obesity myself. And so, I know that it is not always easy to engage the families and get them to understand these implications. So, tell us some of the strategies that you use to engage and support them.

Dr. Anton Dietzen: I think a big part of being a physician is that coaching mentality, which I've always thought of meeting someone where they are and trying to bring them where they need to be. And so, that first step of meeting them where they are really comes down to understanding what their experience is with excessive weight gain, whether they know that that's an issue, and then kind of assessing what their level of knowledge is around what they think maybe the underlying issues with it are, because a lot of times they're different than what I might think. And I'm not going to make a lot of progress working on an issue that someone else doesn't have a lot of investment in. So, I tend to try and focus on the issue that shape and modify the language around it perhaps, but focus on the area where I feel like I'm getting the most buy-in and the most investment and the best level of understanding, and kind of make that a starting point and look for progress there and then layer on different interventions over time. But I want ultimately the patient ideally, or at least the family and caregiver, to be invested in the process and to be on the journey with me so that it's something that we're working on together.

The last thing I want is for the patient or the caregiver to feel like, "Oh, when I go see Dr. Dietzen, he's going to talk to me about the weight again," or "I'm nervous about this visit, because I think the weight's going to be up again." I don't want them to be feeling anxiety around that, because I know how difficult and how challenging it can be and how so many different factors can play into it. So, I just really want to be there as an ally and as a partner, as an educator, to kind of approach different challenges and troubleshoot and recognize that we might try a dozen different things before we find something that works and that's okay. That's very common in obesity management in general, but especially in pediatric and the special needs population where there's just so many variables and some of them we can adjust and modify. And others, we just really can't. Some medicines, we have to keep on to keep a child safe. And so, even though we know they're leading to excessive weight gain, we're not necessarily going to make changes in that area. So, we might just kind of have to move down the line to the things that we can make safe change.

Melanie Cole, MS: Then, let's talk about those. What are some of the key considerations rehabilitation specialists should keep in mind when helping families? What are some of the key components of an effective weight management plan for these children? What do you do with them?

Dr. Anton Dietzen: The biggest thing that I do first is I think in pediatric physical medicine and rehab, we really try and look at the child holistically. So, we're looking at the child, who they are as a person, what are all the things that contribute to who they are, what do they enjoy doing, what brings them joy, what are the challenges. And then, same thing with the family, what are the challenges to caretaking, what effect is the excessive weight gain having on those things. Is it making it difficult for caregivers to do transfer or to bathe or to keep skin folds clean and skin healthy and things like that?

So, we really just try and look at the whole child and then treatment plan from there. And I mean, I like to start with the interventions that I think are going to have the least negative impact on those things that bring the child and the family joy. So if every night after dinner, they have a little bit ice cream for dessert, right? I'm not going to say, "Okay, well, no more ice cream now," right? But if there's another kind of lifestyle modification that I think I can make that's not necessarily going to negatively impact their time as a family together and things like that. I'll start with that. I kind of think about a little acronym that I've always used called SNAP. So, the S is for sleep and sleep has a huge impact on weight. And so, a lot of times in these populations, we're using maybe an iPad to get to sleep or a lot of screen time and things like that. And we know that light can disrupt the circadian rhythm. Sometimes there might be an issue with sleep disordered breathing like sleep apnea or something like that. And those types of things can affect cravings for food. They can affect blood sugar control. So, I'll look very closely at sleep, we'll typically do.

The next one is N for nutrition. So, looking at what they're eating, when they're eating, what's kind of the situation for eating. Are they eating it all around the dinner table together? Are they eating in front of the TV, in front of the tablet? And typically, do a diet log, so kind of look at the last three days, what did they eat each meal, what did they drink each meal; what number of servings, the number of ounces of beverages they had and things like that.

And then, I like to look at A for activity. So, especially in a child with special needs, there's a lot less outlets for physical activity. So, typically, a developing child, they might be able to go to the park district for a gymnastics program or go to the park and run around and things like that. And sometimes, that's either not safe or the park isn't adapted in a way that a child can access it, and so there's less kind of outlets for physical activity. So, we'll look at what kind of things we can do to increase physical activity, and sometimes that's just as simple as adding some chores, and maybe carrying a laundry basket up and down the stairs. If they spend a lot of time on the iPad, maybe trying to get in a standing position rather than a sitting position, or rather than laying in bed, moving it from the upstairs to the downstairs. So after, 30 minutes on the tablet, they have to bring it up the stairs to use it or bring it down the stairs to use it, or carry a basket of laundry up or something like that. In our kids who have mobility issues, sometimes it's something as simple as increasing the amount of time in a stander. We're working with our physical therapist counterparts to try and come up with other sort of ideas to increase weightbearing time or physical activity time.

And then, the P I think of as psychology, so what's the underlying pressures and psychological factors that are impacting the behavior surrounding the excessive weight gain. So, is it a way that we're managing stress or behavior that maybe we could manage more effectively with other coping tools? And maybe I can have one of our psychologists kind of work with them on that, or maybe it's just sort of not a good understanding of what healthy snack options are. And so, maybe I'll partner with our dietician to bring in some ideas that a child might like for healthy snack options if there's a time when they need to kind of have something to keep them safe and occupied for a little bit that are reduced caloric density and things like that. So, looking at those kinds of factors.

Melanie Cole, MS: Why is that critical to approach treatment more aggressively rather than adopt a watchful waiting approach? I mean, we think of weight loss as much more difficult than weight management. And certainly, that would be one of the ones, but I'm sure there are other features and things, reasons that you want to really get into it and help these families as quickly as possible.

Dr. Anton Dietzen: Historically, we were using a watch-and-wait approach. And I think that was largely, because it's a difficult conversation to have with patients and families when you're talking about weight. And it's important to do it in a way that recognizes that most families are trying to do the best thing for their child, and sometimes they don't necessarily know what that is or there's unseen barriers to doing that. But coming at it with that knowledge or that sort of bias that this is someone who's trying to do the best thing for their child, and I'm here to kind of come alongside them and help them with that part of the process. But that can be a tough conversation to have. It can be time-consuming. There can be really large gaps in education and things like that.

And so, I think that's what led to the watch-and-wait approach, but we've just seen that network. The childhood obesity crisis is growing and increasing and even more so in the special needs population. And so, we have to be aggressive both with the non-pharmacologic management, lifestyle interventions, as well as the pharmacologic management.

The AAP, American Association of Pediatrics, came out with some guidelines. And one of the things they talked about is getting 26 contact hours with the patient per year, and that's a typically developing patient, right? And so, in our special needs population, I mean, probably, I wouldn't be surprised if it was twice that, that we need almost an hour a week of time with that patient just for education and check-in. And that's not all necessarily physician time, that's working with maybe a psychologist or a behavioral psychologist or a nutritionist or a physical therapist, but just having that frequency of check-in, to continue to combat those education gaps, to continue to support the family and reassure them that we're not always going to see necessarily weight loss, especially in children. A lot of times, what we're trying to do is prevent weight gain while longitudinal growth is occurring. So if the patient got taller, even if they didn't decrease their weight, their weight was stable, their BMI is still improved. And so, that's still a positive overall improvement in their health status.

Melanie Cole, MS: Are there any new weight loss medications that are appropriate for kids with special needs? We're hearing about so many medications these days.

Dr. Anton Dietzen: I like to really tailor the medication intervention. So, the first thing I do with medications is I look at what the child's on and what it's being used for. And then, I try and see is this a weight-promoting medication that they're on? And is there a substitute that could be equally efficacious that maybe is weight-neutral or weight-negative? Sometimes it's even there's a medication on, especially in our more complex kids, that family's not even sure why they're on the medicine. They were started maybe three or four years ago. We're not sure if it's really doing anything anymore. Sometimes I'll work on kind of slowly weaning those medications off and seeing what happens to the weight, just with those interventions.

And then, when we look at the weight loss medications that we have, a lot of them are relatively blunt tools, right? They're not directly impacting the weight. So, we're maybe trying to impact appetite, or we're maybe trying to impact the cravings piece, or maybe trying to increase the number of calories that the patient burns when they're just at rest. And so, some of those medicines we use off-label for those things, I won't get into kind of the specifics. But the medications that we're hearing the most about, and I think that carry the most potential are the GLP-1 agonists and those are like the semaglutide, liraglutide, those types of medicines. And so, we do have some approvals for those specific class of medicines now for patients who are 12 and older and meet certain weight and health requirements. But the difficulty with that is there's really inconsistent insurance coverage for those. And so, it's not uncommon that we'll submit. For one of those medications, we'll get a denial from insurance because of some criteria. We'll do a peer-to-peer. And then, they'll maybe suggest that we do a different medicine in that same class, and then, that one will get denied. And so, sometimes it's hours and hours of time, you know, writing letters and for our nurses on the phone kind of working to try and get these medicines that these patients really need. Certain insurance like Medicaid just won't cover those medicines entirely as a class. So then, I mean, it's really kind of a discrepancy in what treatments we can offer patients based on their socioeconomic status at that level.

Melanie Cole, MS: Well, it certainly is a disparity. And you've mentioned a few people on your team and nutritionists, dieticians. Discuss the importance of that multidisciplinary team in managing these children and their families to help them all as they maintain weight and work on, as you say, their fitness level, whatever their special need happens to be.

Dr. Anton Dietzen: We rely really heavily on our psychology and behavioral psychology colleagues to help look at the underpinnings of things that may be leading to excessive weight gain. The more complex patients, the more kind of members we're going to think of being really directly implemented. And we think about that 26 contact hours. Like I mentioned, that's kind of spread across all different specialists who are looking at the different aspects of the effects of weight gain with these patients. And so, often it'll be on the medical side, someone like myself, Pediatric Physical Medicine and Rehab, pediatric endocrinologist, depending on what other kind of issues there are; sometimes a Sleep Medicine Specialist to look at things like obstructive sleep apnea; and then, obviously, a dietitian to continue working on creating a healthy meal plan and continued education for the family and caregiver around that; physical therapy to look at any barriers to movement and physical activity if there's any pain or other issues that are kind of getting in the way of making progress towards being able to be up and moving as much as possible. And then, when it's available, Behavioral psychology or Psychology to help kind of look at the psychological and behavioral kind of underpinnings to the behaviors that are leading to that excessive weight gain. And I think that at a minimum is really the team that you need to really approach this issue comprehensively.

Melanie Cole, MS: Such an important part of the whole picture. As we wrap up, Dr. Dietzen, what other strategies or interventions do you recommend to help families? Please offer some advice to fellow rehabilitation specialists looking to assist families in better managing their special needs child's weight.

Dr. Anton Dietzen: I think the biggest thing is just to initiate the discussion or if you're not comfortable initiating the discussion, don't be afraid to refer to someone who can start that discussion, and it's always good to kind of gauge someone's understanding and someone's level of concern about an issue. And so, try and ask, open any questions in what way do you think your child's weight is affecting their ability to move or ease of transfer for you or ease of caregiving and things like that, and just kind of initiating that conversation in a way that's non-judgmental and really trying to be a partner to the patient and the family in optimizing their function.

Melanie Cole, MS: Thank you so much, Dr. Dietzen. You are a great guest as always, very informative, and thank you so much for joining us. To refer your patient or for more information, please visit our website at breakthroughsforphysicians.nm.org/rehabilitation to get connected with one of our providers. That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole.