Trisha Williams (Host 1): Hi, guys. Welcome to the Advanced Practice Perspectives. I'm Trisha Williams.

Tobie O'Brien (Host 2): And I'm Tobie O'Brien. This is a podcast created by advanced practice providers for advanced practice providers. Our goal is to provide you with education and inspiration. We will be chatting with pediatric experts on timely key topics and giving you an inside look of the various advanced practice roles at Children's Mercy.

Host 1: We are so glad that you're joining us. Before we introduce our guest, we wanted to share with you a very exciting opportunity. We are finally offering nursing contact hours. Participants who meet the successful completion requirements will receive 0.5 nursing contact hours. To receive the contact hours, you must listen to the entire podcast episode and complete the evaluation associated with the episode. You can visit childrensmercy.org/appeval. That's childrensmercy.org/appeval.

Children's Mercy Kansas City is approved as a provider for nursing continuing professional development by the Midwest Multistate Division, an accredited approver by the American Nurses Credentialing Center's Commission on Accreditation.

Now, that we have the housekeeping tasks out of the way, it's time to sit back, tune in, and get started. We are pleased to have Jamie Neal Lewis visiting with us today. Welcome, Jamie.

Jamie Neal Lewis, APRN, MSN: Thank you for having me.

Host 1: You are so welcome. Would you mind taking a few seconds and just give us a little blurb about yourself?

Jamie Neal Lewis, APRN, MSN: Sure. Well, I'm Jamie Neal Lewis. I'm a Nurse Practitioner in the Developmental and Behavioral Pediatrics Clinic at Children's Mercy. I'm both a pediatric nurse practitioner, primary care-certified and psychiatric mental health nurse practitioner board-certified. And then, just last week, I finished my DNP, so I'll be getting that degree later this month. And that's been a five-year journey, basically probably since we talked the last time.

Host 2: Yeah, congratulations. That's awesome. Now everybody, Jamie was our second guest ever on the podcast back in 2020. So she was just starting her journey in this, mental health realm at that time. And so, now we were just saying before we started visiting, that she's been doing it now for five years.

So that's really cool. We're so excited to have you on today.

Jamie Neal Lewis, APRN, MSN: Thanks for having me. I'm excited to be back.

Host 2: Absolutely. So, well, today we thought it would be great to cover some ADHD topics, Does that sound good to you?

Jamie Neal Lewis, APRN, MSN: That sounds great.

Host 2: Great. First of all, why don't we start by having you define really what ADHD is and if there's any kind of updates to the latest practice guidelines from 2019?

Jamie Neal Lewis, APRN, MSN: Yeah, sure. ADHD is basically a trio of what we call core symptoms, and they include inattention, hyperactivity, and impulsivity. The hyperactivity and impulsivity symptoms are kind of grouped together. So for those of you that take care or evaluate or assess for ADHD, when you use your screening tools like the Vanderbilt assessment, that's why you'll see nine symptoms of inattentive and the nine symptoms of hyperactivity and impulsivity grouped together.

So, there's 18 core symptoms that we look for when we're evaluating for ADHD. Those are on, again, on those screening scales. There's a couple different theories on why we think people have ADHD. And one is that the prefrontal cortex in the brain is it doesn't develop as quickly as other kids that don't have ADHD and that's been shown on MRI. The other theory is that some of the chemicals that we think help with executive functioning, dopamine and norepinephrine are both a little bit too low and too slow. So, that's why there's several different ways that we can treat kids with ADHD.

Host 1: So, let's talk about some common dilemmas for our community providers and like managing these kids with this diagnosis

Jamie Neal Lewis, APRN, MSN: Yeah. So, there's a good number of kids who are going to qualify for what we call complex ADHD, which is where they have several comorbidities or difficult-to-treat ADHD. In 2019, the American Academy of Pediatrics came out with their treatment guidelines for ADHD. But then in 2020, the Society of Developmental and Behavioral Pediatrics came out with some guidelines and algorithms to treat kids that qualify for what we call complex ADHD. Probably the most burdensome things for primary care is the burden of sending the prescriptions, especially when you live or you're working in Missouri, because these are controlled substances. You cannot put refills. You have to send a new script every month. And now, Missouri has a prescription drug monitoring program or a PDMP and that has to be checked and documented. I believe in Missouri, it's at least twice a year. Usually here at Children's Mercy, we do it every month. And so, it's a time burden because it just takes a lot to go through every patient and every patient's request for a refill.

Host 1: For their medications, right?

Jamie Neal Lewis, APRN, MSN: Just for their stimulants, yeah.

Host 1: Wow.

Host 2: So, tell us a little bit about what that diagnosis process might look like for kids as they are getting evaluated for ADHD and what those typical meds that you were seeing can be difficult to the most burdensome medications. Like, what are those typically?

Jamie Neal Lewis, APRN, MSN: Yeah. So, part of the burden are the stimulants because they're the controlled substances. But right now, there's a nationwide shortage. Prescribers are prescribing a medication after they're checking the PDMP, sending it in, and then the family calls back and says, "Oh, now the pharmacy is out of that medication. Can you send it somewhere else?" So, sometimes we're sending the same exact prescription for one month to three to four different pharmacies, and it's just a lot for the team and it's a lot for the parents to call around and try to find a pharmacy that has the medication that we need in stock. That's a big barrier and a big burden. It's a barrier for patients and families. And it's a burden for all of us involved in the care of these patients.

Host 2: And what age do you see those kids diagnosed?

Jamie Neal Lewis, APRN, MSN: For non-complex ADHD, it would be pretty much anyone older the age of 6, with just kind of what we think straightforward ADHD. When we think about complex ADHD, those are for kids that are younger, so five years and younger. Additionally, sometimes there are other complexities involved in there with autism or the other comorbidities, ODD, which is oppositional defiant disorder, anxiety, mood problems, things like that.

Most primary care offices, to my knowledge, do a great job diagnosing and treating kids when they present with concerns of hyperactivity or behavior problems. You know, that's kind of an easy thing to start with as you go through your evaluation with, you get their medical history, you know their family history, and then for ADHD and stimulants, one of the things we also try to get is a really thorough cardiac history both for the patient and for the family because that is significant when we use stimulants for ADHD. So, you want to get that detailed information. And then if you suspect ADHD, then your next step can be just to send out those ADHD rating scales. The Vanderbilt rating scales are free that you can just download from the internet and they'll have a parent assessment and a teacher assessment, because we always get symptoms of the child in two different settings, which is part of the diagnostic criteria. So, we need to see if in two settings, which for kids is usually home and school, if we're seeing similar type of symptoms in both of those areas.

So, that's kind of the process on how someone would go about evaluating a pretty kind of straightforward. If you have a four-year-old who would meet criteria for a complex ADHD, that might be something that many primary care providers might be comfortable going ahead and doing at least some history or doing different rating skills, which is the ADHD Preschool Rating Scale IV to look for those symptoms.

Treatment is a little bit different based on the guidelines from the AAP in 2019. And so, that's where sometimes looking for subspecialty help comes in very handy. Kids under the age of six, we don't usually start with medications. So, that's kind of nice. We usually start with behavior therapy, but most primary care providers probably don't have all of the same resources as we have here at Children's Mercy. And then, for school age children six to 12, if the primary care provider seems comfortable, they can go ahead and start a medication and do behavior therapy.

Host 1: That was going to be my next question. Like, the behavioral therapy, is that something that you'd always do in conjunction with pharmaceuticals?

Jamie Neal Lewis, APRN, MSN: Yeah, that's a great question. I always encourage my patients to do some type of behavior therapy because parenting a child with ADHD is difficult. Definitely for five and under, we would recommend behavioral therapy. We have what's called Parent-Child Interactive Therapy or PCIT here at Children's Mercy, and that's kind of the gold standard treatment for young kids with ADHD.

We also have psychology support that help parents target certain behaviors to address ADHD symptoms, especially at home where the parents are. And then, we also have an ADHD parent group that's led by either one of our psychologists or outstanding BCBA. And it's a manualized treatment for eight weeks, and each week is a different topic on the common things that parents of children with ADHD see. So, there's lots of different things. But even for school age children, I am still recommending psychology support when needed or the ADHD parent class.

Host 1: Is that something that is also available in school districts? Like, do they have that behavioral therapy? Some schools have psychologists, right?

Jamie Neal Lewis, APRN, MSN: Yeah, they do. A lot of schools usually will have a school psychologist, but they probably don't have the more intensive behavior therapy like we can offer here. A lot of this behavior therapy is also offered in our community. So, there's other places, private places, not Children's Mercy, that parents can go for these types of things. Schools usually have a psychologist. But from my knowledge, they kind of travel around, and they go to different schools and they help with certain cases, but not probably overall behavioral therapy.

Host 2: How do you talk to parents about explaining how the medicines work to help these kids?

Jamie Neal Lewis, APRN, MSN: We know from years and years of research that stimulants have the best effect size on treatment of ADHD. So, they are the best medication to treat ADHD. And then, I kind of just go through, you know, the benefits, the risks. We talk about how long-term outcomes for stimulants actually show decreased motor vehicle accidents, head injuries, decreased suicide rates in people with ADHD, decreased risk of substance use disorders later in life, which is really important for a lot of parents to hear because stimulants also come with a black box warning for increased risk of addiction or substance use disorders or dependence. So, reassuring parents that the research that we have actually shows decreased risk, you know, a lot of people will just feel a weight lifted when they're thinking about that.

Host 1: So, I'm kind of like picturing a kid going through a diagnosis. So, say a kid walks into their primary care, their family has concern, their parents have concerns for ADHD. What would be the differential diagnosis, I guess, that they would try to rule out prior to giving them the diagnosis of ADHD or deciding to do that Vanderbilt screening tool?

Jamie Neal Lewis, APRN, MSN: Another good question. You know, to the history that you're taking, we're also looking for other risk factors that would kind of point us towards ADHD such as substance exposure or prenatal exposures to substances, early birth, different things like that, family history of ADHD. If all that is ruled out, the other big thing that I think about is trauma. And I ask that, I think most of us do, ask about trauma histories on anyone coming in for an ADHD evaluation. So, things like, are you concerned That your child's ever witnessed any violence other than what we've seen on TV? Are you concerned your child's ever been abused or neglected? Is there anything that makes you think your child could have PTSD symptoms, because sometimes behaviors that we see in human beings that just seem unexplainable, that's kind of when I start thinking about trauma.

Host 1: That makes sense and it kind of makes me wonder with the increased use of screen time and not so strict guidelines of what kids can play, you know, on video games or what they can watch and, you know, you have five-year-olds playing video games with guns and shooting people and blood and those kinds of things, do you think that that potentially could play a role or it's kind of hard to say?

Jamie Neal Lewis, APRN, MSN: I think that's actually hard to say, Trisha, because, you know, our society is just changing where we're all spending a lot more time on screens. We still typically say video games and screens are still-- I probably hear that from 90% of the patients. And people will often ask, "Well, how can they have ADHD if they can watch their screen for eight hours a day on a Saturday and just stay totally focused?" And we usually say, well, because if you enjoyed that, ADHD symptoms tend to come out during non-preferred activities. So if your child loves video games or YouTubers or all that stuff, they probably can stay focused for eight hours at a time and still have ADHD. But you know, a lot of our young kids and maybe even our teenagers too, but I have elementary age kids and they take a computer with them every day to school, so they're spending a lot of time on screens just at school.

Host 1: Yeah. A lot of time, which that's a future podcast for this season, is that we're going to talk about screen times and, things to that nature. So, it'll be interesting to kind of mold these two together. Okay. So, they go into their primary care. Parents have concerns. They rule out, you know, and talk about all of the things and do the good history taking. They do the Vanderbilt screen. They test. There's a high concern for-- you called it, like they're seven. So, that would be a non-complicated ADHD, right?

Jamie Neal Lewis, APRN, MSN: Yeah, most likely.

Host 1: Okay. And so they get started on as they decide with the family and have good discussion, stimulants and behavioral therapy, and then, you know, parental support, all of these things. So, what else can these kiddos do to like control their behaviors? Is it a chance that they can get weaned off of their stimulants and not have to take them? Or is this like a lifetime diagnosis and management?

Jamie Neal Lewis, APRN, MSN: Great question, because new data just came out a couple of years ago. We used to think that probably most people either outgrow their ADHD symptoms or get to the point where they don't have a lot of impairment or functional impairment. However, new data suggests that probably most people diagnosed with ADHD in childhood continue to have impairment in their day to day life as adults. And so, one of the things we often say is remember kids with ADHD most likely came from parents with ADHD, and they forget to request their refills on time and different things like that. So we try to be very cognizant that this probably runs in family and being disorganized is kind of one of the core symptoms, lack of organizational skills of ADHD.

Host 1: Interesting.

Host 2: That is interesting. Can you talk about why sleep seems to be such an issue for these kids as well?

Jamie Neal Lewis, APRN, MSN: It's very common for people with ADHD, even adults to have problems with sleep. We know that insomnia, it's just one of the more common things. We usually recommend taking a really good sleep history also when you're evaluating for ADHD, and that's for a couple of reasons. One, because we know sleep is just a problem, commonly, but also because when you prescribe stimulants, then insomnia can be a side effect. So, we usually say, what time do they go to bed? What time do they wake up? Do they sleep through the night? And then, if they have trouble falling asleep, then you might be asking about symptoms of restless leg syndrome because that's very common in people with ADHD, but you'd still want to get information about obstructive sleep apnea, like snoring, tossing, and turning, how many times a night do they wake up, different things like that. Because if you do end up prescribing a stimulant, sometimes you will see some sleep onset insomnia. Additionally, you can also see some middle of the night wakings when they didn't happen prior to the stimulant. One of the new medications called Jornay, which is a great option for kids who really struggle in the morning, but it is taken at night because it's delayed release. So, you take it at night and then the child wakes up in the morning with their stimulant already going. But if you take it too early in the evening, then sometimes those kids can start waking up really early in the morning.

Host 1: They're like the 4:00 a.m. "Hello." 4:00 a.m.-ers.

Jamie Neal Lewis, APRN, MSN: Yes, exactly.

Host 2: Well, it sounds like Children's Mercy has lots of good resources for these kids and especially it sounds like the kids that are like less than five, that they maybe have some like comorbidities or it's the more of the complex ADHD. Yeah.

Jamie Neal Lewis, APRN, MSN: Yeah. Over at the ADHD clinic, we kind of specialize in the complex ADHD. It includes more than just the kids under five. Technically, the Society for Developmental and Behavioral Pediatrics says it's for kids four and under or 12 and older, because as kids get older, the other things that you need to think about that can affect concentration are going to be anxiety and mood disorders.

And then, of course, we talked earlier about the presence of the coexisting conditions. If another qualifier for complex ADHD is if you're treating and they continue to have moderate or severe functional impairment, or sometimes we get kids with diagnostic uncertainty. Maybe their history and the clinician's experience suggest ADHD, but the Vanderbilt rating scales are subthreshold, then sometimes that can be hard to make the call on that diagnosis, so we take a lot of those kids in as well. And then, of course, any child that's having difficulty or inadequate response to treatment, then those are kids that would qualify for complex ADHD.

Host 2: Great. That's really helpful.

Host 1: Let's take a few minutes and switch gears here. Let's talk about autism. I know that this is a topic and a diagnosis that everybody tends to handle with very gentle hands and discussing the topics and things with the families. Tell us some common dilemmas for community providers in managing kids with autism or even trying to get them diagnosed.

Jamie Neal Lewis, APRN, MSN: So, the first thing is it can be a long wait to even get patients diagnosed with autism. We're doing so good at catching more higher functioning kids with autism earlier that it's brought the rates down to like one in 36 kids are now being diagnosed with autism. So, the wait to be diagnosed with autism when you're under about the age of five is probably shorter. You know, at Children's Mercy, it's probably right now anywhere between three to six months. But school age kids and especially teenagers, the waits get longer because sometimes it can be a little bit harder to diagnose.

So, my guess is primary care clinicians probably don't have people in their offices that are diagnosing autism, and so they send them for a referral. Children's Mercy, we do a lot of autism evaluations with our team. KU has a team. And then, there's some private places in the community as well that do a good job with their autism assessments.

Another problem is that if kids are diagnosed with autism, but not necessarily using what's called the ADOS, which is the gold standard for the diagnosis, some states won't count that as a real autism evaluation. So, there can be barriers in many ways, one with waits and also with the nurse practitioner gave me the autism diagnosis, but she didn't use an ADOS; therefore, people are not going to recognize that diagnosis without the full evaluation.

Host 1: So, you're making a recommendation to make sure that if you're going to do that, to use that ADOS screening tool?

Jamie Neal Lewis, APRN, MSN: Correct. And that's usually done at specialty centers, which is why the waits are long.

Host 2: What are the other barriers do you think to like early screening for these kids? I would guess like language kind of barriers could be a barrier for some kids being able to be screened. I didn't know if there's other things that are in the literatures that make it difficult or that these are the kids that are diagnosed later.

Jamie Neal Lewis, APRN, MSN: To my understanding, a lot of primary care offices will use some good screening tools, specifically one called the M-CHAT, which is the one that they use at my pediatrician's office. And it's a good screener. And it comes in many, many different languages, which is nice. So, language might be an issue for some places. But there might be good number of kids with pretty high functioning autism, that maybe nothing flags on the M-CHAT at the pediatrician's office. And that's why it's not until they're 10, 12, 15, that we start to see difficulties, more with social interactions come up and that's when we start to think, "Oh, actually, maybe this is from autism. That would be my thought about it, is because we are better at picking up some of those symptoms of autism, they get diagnosed later, they're harder to diagnose because their skills to mask or cover up things are very helpful. But then, it becomes later when they're diagnosed.

Host 2: That's fair. That makes sense. It's like they aren't really hitting all the red flags of, like, concern, and so they just kind of skirt by. And then, there's concern later. That makes a lot of sense.

Jamie Neal Lewis, APRN, MSN: Yeah. And the other thing too about autism to know is that ADHD is probably the most common comorbidity for kids with autism. So, that's why we see a lot of kids with ADHD and autism in our developmental and behavioral clinics and in our complex ADHD clinic.

Host 2: And do we know why that is?

Jamie Neal Lewis, APRN, MSN: I don't know why that is. I think prior to the DSM-5, which we're now on the DSM-5-TR. Prior to DSM-5, which I think came out in 2013, if you had a diagnosis of autism, you could also not have a diagnosis of ADHD. They were kind of included. And then in 2013, they kind of separated them out so you could have an autism spectrum disorder diagnosis and a different ADHD diagnosis.

Host 1: So, it's just always probably been present. Now, we're just kind of separating them out.

Jamie Neal Lewis, APRN, MSN: Yeah. But not every child with an autism spectrum disorder is going to have ADHD.

Host 1: And not every child with ADHD is going to have autism.

Jamie Neal Lewis, APRN, MSN: You got it. Exactly. One of the things we like to say on our autism team is autism looks very different in everybody. So if you've met one person with autism, you've only met one person with autism. And the next person you meet with autism is still going to be a very unique individual.

Host 2: I like that. That's great. That's good advice.

Host 1: Yeah. Very unique individual and have very unique interactions and needs and things that, help provide care for them and how they can be successful.

Jamie Neal Lewis, APRN, MSN: Right. Exactly.

Host 1: I like to look at patients as puzzle pieces, and sometimes people's puzzles are five pieces and they're all turned right side up. And other people's puzzles are a thousand pieces and they're all upside down. And so, we just have to figure out how to turn them right side up and put them together.

Jamie Neal Lewis, APRN, MSN: I love that. Really good analogy.

Host 2: I like it!

Jamie Neal Lewis, APRN, MSN: Yes.

Host 2: Well, one last little question about autism. So, are there some genetic workups that sometimes get done also for kids with autism?

Jamie Neal Lewis, APRN, MSN: Yeah. We always recommend at Children's Mercy for anybody diagnosed with autism, we recommend some genetic testing. The first one a fragile X, and then the second one we do without going into too much detail is basically a chromosomal microarray and that just goes and looks gene by gene by gene to see if anything is different. So, those are our kind of two standard genetic tests that we would order.

Host 1: I think that our future is moving towards, and we're already there, with looking at the genetic makeup of everybody to determine what's the connection, right? So like, you know, genomics department at Children's Mercy, I mean, it's exciting. We're living in exciting times when it comes to the genetic work that we're allowed to do. So, this is very interesting.

Jamie Neal Lewis, APRN, MSN: On that note, I'd like to point out for people that are wondering, because we get asked this a lot about stimulants. For people out there that are doing pharmacogenetic testing, We typically say it's not quite ready for stimulants yet, so a lot of companies are it and insurance may pay for it or patients might pay out-of-pocket for it, but pharmacogenetic testing for stimulants is probably still buyer beware. So if they want to say we don't want to have to try different meds, we want to do the genetic testing so we just get the right med the first time, we typically will say the technology is not there yet to be that helpful.

Host 1: But it's exciting to think that it is going to be there.

Jamie Neal Lewis, APRN, MSN: It is.

Host 1: Awesome. Jamie, we loved having you spend your afternoon with us today and giving us some of the vast knowledge that you have on ADHD and autism. We like to end each of our season, as you know, from when you were on our first season with a common question to kind of tie our season together. And our question for this season is what is filling your cup in this season of your life?

Jamie Neal Lewis, APRN, MSN: Well, probably two things jump right to the top of my head. The first is now that I've finally finished with graduate school, getting to spend more time with my kids and hopefully not missing out on as many of their activities. I'm really looking forward to that. And then, the personal thing that I love to do to relax is to watch British mysteries on TV. Yeah, we are big mystery people, grew up watching mysteries, and now I'm into British mysteries.

Host 1: I love that. What's your favorite British mystery?

Jamie Neal Lewis, APRN, MSN: Let's see. Well, currently, I'm watching Father Brown. I think I'm on season five of that, but I also really love Vera. I mean, I love all of them. That's just the thing.

Host 1: I love that. I need to watch Vera. That looked good.

Jamie Neal Lewis, APRN, MSN: Yeah. I just finish one series and move right on to the next one.

Host 1: Amazing.

Host 2: That's great. That's great. Well, congrats again on getting your DNP and I hope you get to spend lots of time with your littles and get to binge some of those mysteries this season.

Jamie Neal Lewis, APRN, MSN: Thank you so much for having me, you guys.

Host 1: You bet.

Host 2: Sure thing. Thanks so much. If you have a topic that you would like to hear about or you are interested in being a guest, you can email us at tdobrien@cmh.edu or twilliams@cmh.edu. As a reminder, to complete your evaluation and ensure that you get the credit for listening, visit childrensmercy.org/appeval.

That's childrensmercy.org/appeval. Once again, thanks so much for listening to the Advanced Practice Perspectives podcast.

DISCLAIMER: No relevant financial relationships were identified for any member of the planning committee or any presenter author of the program content.