Juvenile and Rheumatoid Arthritis Awareness

I'd like to welcome everybody, today's presentation on juvenile arthritis and rheumatoid arthritis awareness. I'm your host, Dr. Donnelly Snipes. Now, you might be thinking, why are we talking about arthritis? Well, because a lot of our clients, whether they have juvenile arthritis or they're adults and they have rheumatoid arthritis, do struggle with this. And arthritis can be an extraordinarily painful and debilitating condition which we know is likely to have an effect on their mental health as well as the rest of their physical health if the appropriate mitigation steps aren't put in place. So that's really what we're going to talk about today. We're going to talk about what it is. Identify the prevalence of juvenile arthritis and rheumatoid arthritis. Explore the relationship of juvenile arthritis and rheumatoid arthritis and affiliated medications to mental health. The good news is that most of those medications don't have a significant negative mental health impact. So, woo hoo there. And we're going to identify interventions to assist people with juvenile arthritis or rheumatoid arthritis achieve their highest quality of life. And that's really what we want to do. We're not going to be able to make this go away for a lot of people. Well, for anybody. But what we can do is to help them learn how to live their highest quality of life. Juvenile idiopathic arthritis and rheumatoid arthritis are basically or are both considered autoimmune disorders. When we talk about autoimmune disorders in childhood, interestingly, not as many occur as you would think. Autoimmune disorders really don't seem to show up as much until people get into adulthood. However, there are a few. Juvenile arthritis affects about 1 in 1,000 children. Now, that doesn't sound like a lot when you think 1 in 1,000. But if you think, you know, at an elementary school, how many kids are there? I know in my high school there were like 2,500 people. So the chances are there were at least two or three people there who had juvenile arthritis. So the numbers are actually there. And we want to also reflect upon the fact that someone who has juvenile arthritis who has these pain conditions and they don't have the resources or the skills or the tools to cope with them, may be more likely to be in our office. So the number of people with juvenile arthritis who present in clinic is probably significantly higher than 1 in 1000. Although there is some good news that with appropriate mitigation, with appropriate services, the mental Health outlook for, for people with juvenile idiopathic arthritis really isn't that bad. They're right on par with a lot of other children and adolescents out there. Another type of autoimmune disorder is type 1 or juvenile onset diabetes, which affects one to two out of every 400 children. Again, I want you to think about, have you ever known somebody with juvenile onset diabetes? I know I have. And thinking about that is twice as common as juvenile arthritis. But it kind of puts it into perspective that it's really these issues. Even though the numbers sound like they're not going to be that prevalent, we really do run into youth who are experiencing some long term or some chronic conditions. Celiac disease in juveniles is actually estimated to impact 1 to 3% of the population. So that's 1 to 3 out of every 100. Those are your three most prominent or most common autoimmune issues in children. Obviously today we're just talking about arthritis, but I kind of wanted to paint a bigger picture for you. Juvenile arthritis or pediatric rheumatic disease is an umbrella term to describe a set of inflammatory, usually autoimmune diseases that impact nearly 300,000 children under the age of 16. Wow. So 300,000 children. That puts it in even bigger of a perspective. Some children with juvenile idiopathic arthritis or JIA have their disease go into permanent remission or only have one or two flare ups. That's important to know, especially when the initial diagnosis is made to help the parents understand that for some children who have this diagnosis, juvenile, I'm just going to say juvenile arthritis because juvenile idiopathic arthritis is a mouthful to say each time. Children with juvenile arthritis may go into permanent remission or they may only have one or two flare ups. And it's important to recognize that this is not something they're necessarily going to live with every single day of the year, every single year of their lives. That gives a lot of hope, that helps parents understand that when there is a flare up, okay, this is temporary. Let's look at what caused it and what we can do to help the child, you know, cope with it and be as happy and, you know, functional as possible during this flare up period. There's a lot of empowerment and hope that comes from recognizing that it is possible to avoid some triggers, it is possible to do things that can help mitigate the pain and recognize that this rarely is a every single day of the year, every year of your life sort of condition. Now, that's not true with rheumatoid arthritis. Rheumatoid arthritis tends to be more prominent, more problematic, more symptomatic more days of the year than the juvenile arthritis. So we'll kind of talk about that in a minute. But just focus on the fact that when a child is diagnosed with juvenile arthritis, we want to make sure we give the parents all the information that there is hope, there are things they can do. Unfortunately, more than 90% of patients with childhood rheumatoid factor positive arthritis and more than half with rheumatoid factor negative polyarthritis were diagnosed with rheumatoid arthritis as adults. So there is a chance, kind of a good chance, that somebody who is diagnosed with juvenile arthritis may develop rheumatoid arthritis as adults. It's not a guarantee, but there is a chance. Okay. You know, we can't guess, we can't know what's going to happen. So what we can do is help people live their highest quality of life and learn how to avoid triggers and prevent or mitigate flare ups as much as possible. Another thing that's helpful to know and to communicate to parents is that juvenile arthritis, to the best of their knowledge right now, is not directly inherited. Some parents may feel guilty if they think that they caused their child to have this condition by their genetics. Now, there are some things that can happen that are associated with later development, but we'll talk about those. But it is helpful to let them know that and also to educate the patient. So when the patient decides that they are, you know, grown ups and they want to have children, to let them know that there is. Right now we don't know that it is directly genetically transmitted. So, you know, they're not guaranteed of having a child that also has juvenile arthritis. What are we talking about when we talk about juvenile arthritis? Systemic arthritis, which is the rarest form, is also called Still's disease and usually starts between ages 5 and 10 and can affect many systems of the body, not just the joints. It's characterized by high fever and a rash on the trunk, arms and legs. Internal organs such as the heart, liver, spleen and lymph nodes are also often involved. So this is a systemic autoimmune problem that, you know, can be very challenging. Like I said, that's the rarest form. Polyarthritis and oligoarthritis and involves joints and sometimes inflammation of the middle layer of the eye, which is kind of odd that that belongs down here and not up with systemic arthritis. But it is what it is. Polyarthritis means more than five joints are involved and oligoarthritis means less than five joints are involved. You know, we're really splitting hairs here. It's what we want to recognize is most of the children with juvenile arthritis are going to have pain in one or more of their joints and sometimes they're going to have eye problems. Rheumatoid arthritis isn't diagnosed until adulthood. And like I said, not everybody who has juvenile arthritis is going to go on to develop rheumatoid arthritis as an adult. That's important to know. It is an autoimmune and inflammatory disease that occurs in adults and can lead to long lasting or chronic pain, unsteadiness, lack of balance and deformity, or misshapenness. A lot of people who have rheumatoid arthritis in their hands, for example, their hands become kind of kinked because their joints are swollen and there's so much tissue damage. Symptoms of juvenile arthritis as well as rheumatoid arthritis. Joints become red or swollen and may feel stiff, painful, tender and warm, especially in the morning. In young children, the parents may see that the child is limping more in the morning, or is favoring one side, or is not wanting to do things as much in the morning. They may not actually articulate that they are in pain, or they may, they may be exceptionally cranky when they get up in the morning. And it's not just because they're not morning kids. They may be especially cranky and that goes away as the day goes on. They found, and we'll talk about this with interventions and exercise, that movement often helps keep those joints sort of lubricated. So it makes sense that when they've been sleeping all night long and still those joints will stiffen up and as they wake up in the morning and they start moving around, the joints will become a little bit less painful. Another symptom is eye dryness, pain, redness and sensitivity to light, even trouble seeing properly, caused by chronic eye inflammation, and sometimes even have floaties. If you've ever had high blood pressure, you may have seen floaties. It looks like these little black spots that are floating around in your field of vision, kind of like little gnats. While this may plague people who have juvenile or rheumatoid arthritis, it's important to recognize this. Think about how having eye pain, having sensitivity to light, can be disruptive and problematic for a child sitting in a classroom, trying to focus on a school book or a blackboard. We do need to recognize that. And if the child is having symptoms of uveitis, that they are Given appropriate reasonable accommodations. And you can work with the school in order to identify what those may be for that child at that point in time. Some children develop a scaly red rash that looks like that is psoriasis. Light spotted pink rash which indicates the systemic arthritis. A butterfly shaped rash across the bridge of the nose and the cheeks which is possibly indicative of another condition called lupus or thickened hardened patches of skin that is indicative of scleroderma. So you have juvenile arthritis that's associated with several other autoimmune issues. You can have them together. Some people with juvenile or rheumatoid arthritis may have weight loss because they don't feel like eating. It can also affect their metabolism. Some, some on the other hand may show some weight gain because they, due to the pain, they're not moving as much and they may be eating. But weight loss is one of the noted symptoms. Fatigue is a huge issue and this is one that we're going to really talk about addressing with people because the fatigue can come because they're not sleeping well because of the pain. The fatigue can come because they are struggling with pain during the day. And it also is just a symptom of a lot of autoimmune issues which can bring on irritability. We can see, I know when I'm in pain, I'm irritable, when I'm stiff, I'm irritable, and when I'm tired, I'm irritable. So if you think about how you react yourself, if you had these symptoms, what your mood might be like, you can understand where it might be coming from. So we're also going to address some of those things. So let's talk about triggers. You know, we're not medical doctors, we're not going to be prescribing anything. But it is important if you work with children to be on the lookout. If you've got a child who's presenting for depressive symptoms or anxiety symptoms, who's exhibiting irritability and fatigue and maybe even weight loss. You know, you do want to think, is there a possibility that there may be some autoimmune something going on here? And ask about sore joints, ask about problems with vision or pain in their eyes. Those are two really important things to ask about. You know, even if children are just, I say, having pain in their eyes because they need glasses, they can't focus on the board. There have been repeated studies that have shown that if children start struggling in school, it takes a toll on their self esteem. And children who have undiagnosed vision problems or learning disabilities often do show reduced self esteem if those things are not addressed because they are struggling in school. So it's really important to assess what are the possible reasons this child may be exhibiting anxiety, maybe exhibiting fatigue and irritability. Mental health comorbidities, including depression in rheumatoid arthritis interact with the disease process, including dysregulation of inflammatory responses, prolonged difficulties with pain and fatigue, and the development of cognitive and behavioral responses that exacerbate the physical and psychological difficulties. Okay, so let's break that down. When you've got somebody, whether it's juvenile arthritis or rheumatoid arthritis, that is struggling with mental health issues, anxiety, stress, anger, depression, you know, a lot of those feelings that people go through when they are symptomatic, when they get diagnosed with something, when they have strong dysphoric emotions, remember that triggers the HPA axis, that triggers cortisol, that also triggers inflammatory processes. So their mood can actually serve in some ways as a trigger to exacerbate the inflammation. And yes, it is a vicious cycle. So as their inflammation gets worse, their pain and their fatigue and their irritability and things get, get worse. And it can be a vicious downward cycle. Which is why it's so important that we help people develop skills for distress tolerance, skills for cognitive restructuring instead of seeing this as the end of the world. Instead of focusing on the negative, focusing on the positive, developing hardiness and resiliency skills, all of those are going to be really important. Because as inflammation goes up, as HPA activation goes up, pain threshold actually goes down. So what wouldn't have caused pain six months ago may be painful now because the pain threshold has gone down and they're experiencing more fatigue. More pain equals worse sleep. Worse sleep equals more fatigue. Think about putting yourself in their head. You know, let's just empathize with this person for a second. You know, I don't blame them for being frustrated and irritable and angry, and especially a child who doesn't understand, they're like, what gives? I can totally get kind of where they, where they are in their mind, which can lead to the development of cognitive and behavioral responses that make the physical and mental health issues worse. They can start developing negative self talk, distress, intolerance and other things. You know, noticing the negative, a negative attitude, which may contribute to their perception of the world as a stressful place, increase their stress and decrease some of their coping behaviors. Another trigger they found for arthritis, rheumatoid arthritis, and juvenile arthritis. Is obesity. Most studies found that obese patients had worse tender joint counts, inflammation, global evaluation scores, pain scores, and worse physical functioning during follow up. Now, I want you to remember that dietary and emotional factors don't cause juvenile arthritis. Something else caused that to happen. But what can trigger a flare up can be diet, it can be emotions, it can be obesity. So let's talk for a minute about smoking. Now you're thinking, well, we're talking about juveniles. They don't smoke. No, but they can be exposed to smoke. Smoking in adults increases the severity of rheumatoid arthritis symptoms, maternal smoking during pregnancy and increases the risk of rheumatoid arthritis in the person, in the child, and later adult. So it's important to recognize that if the child or the fetus was exposed in utero, that does significantly enhance the risk that they will develop rheumatoid arthritis later in life. Secondhand smoke. Now, you know, a lot of y' all may be of the age where smoking was outlawed everywhere in public places. When you really started going there. When I grew up, that wasn't the case. People smoked in houses, people smoked in restaurants, People smoked everywhere. So there was a lot of secondhand smoke. The point being secondhand smoke, you know, if, you know, mom and dad are smoking in the car with junior, it increases the risk of the development of juvenile idiopathic arthritis and rheumatoid arthritis. Another interesting little study that is out there just to kind of give you an idea of the impact of smoking. Among women who never smoked at all in their life, Exposure to secondhand smoke during their childhood was associated with a 43% higher risk of developing rheumatoid arthritis. This is one of those health literacy things that we can promote to parents, that we can promote to people to let them know that, you know, secondhand smoke is really bad mojo for the children that are breathing it. But, you know, we're not necessarily going to ever be able to change someone's behavior if they don't want to. Other triggers, chronic stress, depression, and interestingly enough, gum disease are associated with increased inflammation. Now, we've talked about chronic stress and depression. We know that when we're stressed, when that HPA axis is activated, that ultimately down in the system, there is a secretion of inflammatory cytokines. The purpose of that is to send those inflammatory cytokines to areas where there may be injury to promote healing. So the system itself, you know, makes sense. But when someone is chronically stressed and they've chronically got these inflammatory cytokines going through their body, and that can lead to a lot of problems, including leaky gut, as well as depressive symptoms. They found strong associations between systemic inflammation. And how do they determine that? Well, number one, talk to patients. And number two, there are blood tests that can measure the levels of certain inflammatory cytokines to identify if there is an elevated level, it indicates there is systemic inflammation. So these studies are, you know, pretty on point for what we're talking about. But gum disease, now let's think about that. Gum disease, obviously, is when your gums are inflamed. Well, they hypothesized that the inflammation in the gums obviously has caused the release of inflammatory cytokines and some of that bacteria. Because the gums are broken and inflamed and bleeding, some of that bacteria gets into the blood system and can actually trigger an increase in systemic inflammation, which can trigger an episode of arthritis. Increased inflammation, regardless of the source, is associated with the worsening of juvenile arthritis as well as rheumatoid arthritis symptoms and an increase in pain intensity. Well, think about when you've been hurt. You know, when something is really, really swollen, it probably hurts a lot more. You know, even if it hasn't been long standing and going on long enough for your pain threshold to reduce, the worse the inflammation, the more pressure there is on that area, likely the more painful it will be. Increases in systemic inflammation, as seen in most autoimmune diseases, including juvenile and rheumatoid arthritis, are associated with increased depression and oxidative stress. Okay, we've talked about depression, but let's talk about oxidative stress for a second. Oxidative stress occurs when, just to simplify it, when, because of processes in the body, there's a lot of waste products going on. What addresses oxidative stress? Antioxidants. What else is associated with oxidative stress? The development way later in life of dementia and Alzheimer's. So it is important for whether you're talking about preventing autoimmune issues or preventing late life cognitive decline, whatever. It is important to help people address oxidative stress because it does have a significant impact on our mood and on our cognitive abilities as well as on our physical functioning. So what do we do for treatment? Most juvenile idiopathic arthritis patients need to attend adult rheumatology centers. It's important to make sure that people know that even if they haven't had an episode in, you know, five years, you know, there may be a time where it starts to flare up again to be on alert for that and to go to a rheumatology center if they start having a flare up in order to start mitigating it early on. Now, from what I read, and obviously I'm not a rheumatologist, but from everything I read, since there is no guarantee of going from juvenile rheumatoid arthritis to adult rheumatoid arthritis, they don't just automatically put somebody on preventative courses of medication. The medications that are out there for autoimmune disorders like psoriasis and rheumatoid arthritis are kind of hard on the system and they do have side effects. So it's not just like you can take a vitamin and you know, magically that's going to prevent it. But there are really good courses of treatment out there to reduce pain and improve quality of life, should that become an issue. The primary goal of treatment for all forms of arthritis are to eliminate the active disease. It doesn't mean we're going to get rid of the rheumatoid arthritis. If somebody has that going on, they're going to have that kind of in their system. But we want to reduce the frequency of flare ups. We want to eliminate the active stage, the flare up phases as much as possible. We want to help them normalize joint function. You know, if you can't close your hand enough to open a jar, or you can't close your hand enough to, you know, scrub your own hair, it works on other joints besides just hands. For some people, it affects their spine. Now think about how awful how painful that is when your spine is regularly painful to you and you don't have good range of motion for sitting and standing and doing those sorts of things. So normalizing joint function, that is obviously something that is mainly going to be done by a medical doctor and a physical therapist. But physical therapy and recreational therapy, sometimes occupational therapy, depending on the joints affected, are going to be super useful to the client, especially during the first flare up, so they can learn what they need to do and how to prevent future flare ups. We also want to preserve normal growth. In juvenile arthritis, interestingly enough, the inflammation in those joints can affect the growth plates at the end of some of their bones and impact normal growth. So we really want to help people work to reduce the flare ups so they can reduce the joint damage, so they can reduce the potential impact on growth. For juvenile and rheumatoid arthritis, another goal is to prevent long term joint damage. There may be times when your joints are sore and you know, I've talked told you guys before. Sometimes I can tell when we've got a cold front coming in or a bad rainstorm because my arthritis starts acting up. You know, having these transient little aches isn't going to do a lot of joint damage, but long term inflammation, long term inflammation of the, the joints can cause joint damage. Which is again a reason we want to help people prevent flare ups when possible. And part of that is going to be helping them manage their stress and helping them manage their health behaviors to prevent flare ups. And then when flare ups do happen, we want to help them tamp it down as quickly as possible. We do want to support independent self management. And these last four were really interesting. It was a study that was done on youth that had juvenile arthritis. And the areas that came out were the fact that a lot of these youth wanted to learn how to cope with their arthritis. You know, they were eager, they were optimistic, they felt, you know, like they could be empowered, but they didn't have the skills and knowledge to manage it. They wanted to do it, but they didn't know what to do. So the first two areas that came out were to work with families to support independent self management. A lot of times, especially if the disorder started occurring when the child was very, very young, parents may be extremely protective of the child, not wanting them to get hurt, not wanting them to do anything that may cause a flare up. And the child can feel very smothered or disempowered because of this. So it's important to work with the family to encourage them to give the child or the youth responsibility to a certain extent for managing their condition. You know, let's empower them to do this. And a part of that is also helping them acquire the skills and knowledge to manage their arthritis. You know, if they started having episodes when they were four, obviously they didn't have the skills or the ability to manage it on their own. So the parent probably figured out what helped, what didn't help, and has a very clear idea in their mind about what needs to be done. At a certain point, we need to encourage the parent to say, all right, you know, you're old enough, let me pass some of this knowledge on to you and let me help you figure out what to do in order to manage. In order to manage your condition. Jerusha asks if the anxiety of worrying if their pain will begin or come back fuels depression. And yes, in some people with arthritis and the worrying about the next flare up can cause a certain amount of depression. What the research seems to say is for Juveniles for juvenile arthritis is they are relieved and so happy and elated when they wake up. And you know, it doesn't happen overnight, but when they wake up and they're feeling a little bit better that they don't forecast like that. It's us adults who start thinking about, oh, well, wait till the next time this happens. We do want to make sure parents aren't communicating that message that you've got to live very, very cautiously because otherwise you're going to be in lots and lots of pain. We want to help them figure out how to navigate that boundary where they can be kids with, where they can have fun, where they can experience life and do it without triggering an episode. A child who's not able to be a kid is likely going to experience some depression and anxiety, which may increase their symptoms. You know, we want to encourage them to do what they can within recommended limits. You know, obviously we're working with the multidisciplinary team, so we want to encourage parents to recognize that their children, especially their tweens and their teens, are capable of starting to conduct independent self management. Just like if the child had juvenile onset diabetes, they may have a pump implanted and they've got to monitor their blood sugar. They have to be responsible for independent self management. Same sort of thing goes when we're talking about juvenile arthritis. Helping them keep a log. You know, a lot of kids don't want to journal, so that's fine. Helping them keep a log of what they're doing to identify if there's anything going on that might trigger a flare up. Are they anxious? You know, some kids especially, oh my gosh, when it comes time for state testing. I used to work in the school system and when it would come time for that state test, whatever it's called in your state, children would just be overwhelmed with stress. I had a couple of children that during the test would pull out their eyebrow hairs. That's how bad the stress got. So we do want to look for things that may be coming up, help the youth and the family forecast things that may be coming up that might promote stress, that might promote distress, which could cause a flare up. So they can intervene early. They can develop a plan for how they're going to deal with it. They can work on positive self talk. We need to educate the patient, the significant others and the community about the unique challenges of, of juvenile arthritis as well as rheumatoid arthritis. We need to help people recognize that it exists and it can be really painful, but it doesn't mean, you know, it's not contagious. It doesn't mean that somebody is super fragile. So what is it that we can do? How can we help? A lot of people want to help. They want to be able to support someone who is, you know, having a flare up, who is having pain, but they don't know what to do. So we do need to be able to provide handouts to parents, provide handouts to teachers. If you do an in service in a school, let them know that. One of the things that's really important for all of the autoimmune issues as well as a host of mental health issues, is to help kids practice mindfulness so they're aware of how they're feeling before it gets out of control. Help the kids learn distress tolerance skills so when they get stressed they don't go from 0 to 250 and stay pegged out. Help them figure out resources that they can tap into if they're feeling overwhelmed like the school counselor, so they can better manage their stress levels and their mental health. And we want to increase inclusion and social support for youth with juvenile arthritis through face to face and online interventions. Now youth with juvenile arthritis, we want to encourage them to participate in regular activities, but for a proportion of them, and maybe a larger proportion, it didn't really say in the research. It is also helpful to additionally have connections with other children, other adolescents who are who also have this same issue. So it normalizes what's going on. They don't feel like they are broken, they don't feel like something is bad about them. That is an important thing. And I have resources at the end of the presentation that you can refer to in order to provide more information to family, teachers, parents, et cetera. As I said earlier, one of the wonderful things is that the psychosocial adjustment of youth with juvenile arthritis is very similar to that of non affected youth. And just like most other youth, their psychosocial adjustment is impacted by physical factors. If they're not getting enough sleep, that is going to activate the HPA axis which is going to increase inflammation, it's going to increase irritability, it's going to increase difficulty concentrating, which may lead to struggling at school, which can negatively impact self esteem. You see how it can kind of build on itself. Sleep is so important. And that's one of those things that is relatively easy to do. Now when you're talking about a tween or a teen, there's always that fight about going to bed because they don't want to go to bed at 7:30. And it's important for middle schoolers and high schoolers to still get at least 8 hours, but preferably 9 to 10 hours of sleep per night. So if they have to be up at 5 in the morning to get ready for school or to be at the bus stop at 6, you know, they're going to have to go to bed a little bit earlier on school nights than maybe they want to. It is important to communicate to them the importance of sleep. Fatigue is separate from sleep. There can be fatigue associated with not getting enough quality sleep. And, you know, to that end with sleep, we want to educate them, increase their health literacy about sleep hygiene. And there's lots of videos on the YouTube channel at all CEU's education about sleep hygiene. So I'm not going to go into that right now. But, you know, we want to make sure they're getting enough sleep and that's not the reason they're fatigued. The other causes of the fatigue that are related to the pain and the autoimmune issues, well, we may not be able to do a whole lot about that. So we want to talk with the youth and ask them, when you're fatigued, what is harder to do and what can you do to deal with that. So maybe when they're fatigued, it's harder to get through and stay focused in class. They may not be falling asleep, but they have a hard time getting motivated and staying focused. When they're fatigued, it may be harder to get motivated to do homework. So we want to talk about the things that are more difficult when they're feeling fatigue y and develop plans to help them do what they need to do. For example, homework. One of the things that works well with children and adults, even who are experiencing significant fatigue is to chunk things. Instead of doing two hours of homework, do 15 minutes of homework and then take a rest. And then do 15 more minutes of homework and then take a rest. Yes, it drags it out a little bit, but if they're doing two hours straight, they're probably really still only focusing for the first 15 minutes. And the last hour and 45 minutes is extremely inefficient. So working with them to identify what can help them. Another thing with fatigue is a lot of times it gets worse as the day goes on. Encouraging them to do things in the morning, do things early in the day, so they have a little bit more energy to focus and do what they need to do. It is important to make sure that the youth don't start using this fatigue issue as an excuse to get out of doing everything, you know, I'm too tired to fill in the blank. So we do want to make sure that, you know, if they're too tired to do their chores or to do their homework, then they're also too tired to go out and, you know, go to the park or whatever it is that, you know, that is important because a lot of tweens and teens are very observant and they may try to push that boundary a little bit. But for the most part, fatigue, you know, I want to focus on the fact that for patients with juvenile arthritis and rheumatoid arthritis, fatigue is real. And most of the time it is very real for them. And we want to take it seriously and help them figure out how to live their highest quality of life despite being fatigued. And let me tell you, you know, I'll just put it out there. Hyper dosing on caffeine is not it. Caffeine triggers that HPA axis, gets things revved up again and actually can increase inflammation. So, you know, living on caffeine to counteract fatigue is not the answer. Nutrition is important, and this will come from their doctor or from a registered dietitian. But nutrition is important, especially the antioxidants to help combat that oxidative stress. And omega 3s. Omega 3s have been found really helpful to reduce pain and inflammation. We cannot prescribe diets for people. They need to get that from someone who is licensed to do that. But we do know, and we want to impart to them that nutrition plays a big part. And Amy points out that sugar for some people may also be problematic for causing more pain. I know it causes more fatigue. So we do want to look at helping youth recognize the importance of health maintenance and health promotion activities to prevent flare ups of their juvenile arthritis. Gut health is another one that is super important because guess what, a lot of our neurotransmitters and chemicals in our body that are designed to combat pain and give us energy are synthesized in our gut. So if you have a unhealthy gut, then the chances are you may not have the right balance of neurotransmitters to effectively manage your pain and manage your mood. You can read more. As always, all of the hyperlinks in here go to the journal articles that talk about, you know, these specific issues. Gut health, usually as long as the person is eating a healthy diet and drinking enough water, you know, that usually will stimulate gut health. You know, ideally, cutting out highly processed foods has been found to improve gut health. But we're looking at things that people can do and sustain. So unless their doctor or their dietitian starts recommending, you know, probiotics and this and that and the other, they may not need that. They may just need to eat healthfully to promote gut health. Now let's also think about stress. When you get stressed, what happens to most of our guts? Most of our guts start running over time when we're stressed because that HPA axis is activated. So stress can actually impair gut health. Circadian rhythms are super important because that helps with mood as well as energy, as well as stabilizing cortisol levels and helping us get quality sleep pain management. We want to work with people even if they don't have juvenile arthritis or rheumatoid arthritis. We still want to help people recognize what are some things I can do when I'm in pain besides popping a pill? There is a time and a place for pharmacological pain management, and that's between the client and their physician. But there are other things like stretching, relaxation, massage, hot and cold packs. There are a lot of different things and meditation and guided imagery that are very effective at assisting with pain management and medication side effects are another thing that we want to talk about with patients in general, not just people with arthritis or rheumatoid arthritis. There are a lot of medications, including things like statins, which are taken for cholesterol and blood pressure medications that actually do have some relatively significant side effects as far as or can have some side effects as far as mood is concerned. We want to recognize all of the medications and herbs someone is taking and, and figure out are there any side effects you can go on drugs.com I believe it is. I always have to google it and find the link. And you can. They have a side effect checker for medications and they also have a drug interaction checker on that website, which can be really helpful because you can go through it with clients and say, you know, when you started taking this medication, did you notice a change in and identify it. Obviously we're not going to tell them to stop taking a medication. We're going. But if they are experiencing side effects, it helps them and a lot of times to understand where it's coming from. And we can also advocate for them to go back and talk to their physician and say, you know what, this is really not working for me. Is there another medication I can take if it's that bad? Hormones, especially when we're talking about juvenile arthritis, unfortunately, juveniles, because they are developing, have hormones that are all over the place. And alterations in hormone levels can have significant effects not only on mood but on pain threshold. So hormone fluctuations can also cause or contribute to a flare up. Or we want them in their log to be noting that if they need to. Obviously girls may have an easier time, you know, noting changes in hormone levels based on certain physical symptoms than guys do. But if you notice that there are fluctuations, you know, that's something that can give you a clue that you know for youth, for example, for female youth who develop premenstrual dysphoric disorder, obviously dysphoric is in, in the work, in the diagnosis term. So that tells you that it's probably going to contribute to stress which may trigger or may be likely to trigger a flare up of the arthritis if it's not handled effectively. If they don't have the skills to deal with it effectively affectively. We know that mood impacts their physical well being. So we want to help youth identify not only coping skills and distress tolerance skills to help them deal with unpleasant things, but and this, you know, so many people, adults and youth, don't even think about it. We want to add good things. You know, if you are adding fun things in your life, if you are adding happiness into your life, then you are naturally kind of forcing your body to squeeze out some of those good positive chemicals. So adding positive things in your life is going to be really important cognitively. We can teach psychological flexibility, help them identify how, what a rich and meaningful life looks like to them and how to make the best conscious decision on how to use their energy to move toward that rich and meaningful life. And that's all acceptance and commitment therapy based stuff. But it can be very helpful. Encourage them to have realistic perceptions. Expecting to never have pain isn't realistic for anybody. You know, every adolescent that I've ever known has occasionally had pain, especially when they're going through growth spurts. Every adult that I've known has occasionally had pain and it can be for a variety of reasons. It doesn't mean that the sky is falling. So they need to be realistic and recognize that some days they're going to be a little more uncomfortable than others. Living in the and is another concept that comes from acceptance and commitment therapy. And we practice the mantra a lot in my practice. When you have something like arthritis that may, especially rheumatoid arthritis that you know, older that adults get and tend to have, you know, for the rest of their lives, recognizing that they can live in the, and even during A flare up. They can have a rich and meaningful life and also be having a flare up. It doesn't. Just because they're having a flare up doesn't mean that their life has to stop. Hardiness and resiliency are two other very broad umbrella terms for things that we can encourage youth to develop. Hardiness. If you remember kielbasa back in, I believe it was, 71 proposed this theory that we want to encourage people to recognize that there are a lot of things in our life that we are committed to that are important to us. And just because, you know, maybe I'm having a flare up right now so I can't play in the tennis match this weekend, okay, you know, that sucks. But I have all these other things going on in my life that are also important to me that are going well. So encouraging them to look at the big picture is a huge part of hardiness environmentally. You know, it just comes down to having people reduce their stress triggers, whatever that is for them. Noise, light sensitive noise and sound are the same thing. Noise, light, temperature, anything that adds stress to their life. If they've got. In my house, I've told you all before, we've got four dogs and wood floors. So it sounds like louder than anybody's business when the UPS man comes to the door. And it used to drive me crazy because we have one of those transoms next to the door that's, you know, just a glass transom. And every time a dog saw anything, they would lose their stuffing and they'd start going crazy and I jump out of my skin. And it was just constant and it was frustrating and exasperating and exhausting. So what did I do? I put a curtain up and now they don't hardly bark, you know, except for somebody actually knocks on the door. And that's reduced my stress in my environment because I don't have those episodic, you know, jump out of my skin moments. We want to encourage youth to figure out what can you do in your environment? It may be, you know, relationships with their siblings. It may be sitting, you know, the chair they're sitting in at their desk. We want to consider all of their senses, you know, sight, smell, sound, taste. Help them design an environment that is as relaxing as possible. And finally, relational, supportive friends and family are really important to resilience and happiness for, you know, everybody, not just people with juvenile arthritis or rheumatoid arthritis. We want to help them identify friends and family, identify what they can do to support the youth who has juvenile arthritis to Encourage resiliency as opposed to discouraging risk taking or discouraging them from being kids. Medications work by suppressing the immune system to prevent it from attacking the joints. Okay, well if the body is naturally attacking the joints, it's got its wires crossed, then that's a problem. To prevent joint damage, we need to prevent it from attacking the joints. One of the first line are your immunosuppressives. Unfortunately, just like it sounds, take your immune system and you suppress it. That means you're more at risk of infection. Think about how many colds kids and things kids usually get even when they have an active immune system. When you start suppressing the immune system, then you know, when they go to school and they're around all the other kids, they're snotting and sneezing and whatever, they are at higher risk. So that is a problem or can be a problem, can be managed, but it can be a problem. Corticosteroids are another immunosuppressive that is sometimes used. Unfortunately, steroids do increase anxiety in some youth and long term use is really hard on the body. Another group of medications that's out there are biologics which target tumor necrosis factors or TNFs. And TNFs are cytokines that promote inflammation. So these biologics actually go in and find these inflammatory cytokines and shut them down. Sounds great. TNF antagonists or your biologics are, are associated, interestingly enough, and it makes sense with reductions in depression and insomnia. So as we reduce inflammation, we reduce depression. Well, we already talked about the fact that increased inflammation is associated with increased depression. So it makes sense. Reduce inflammation, reduce depression. And when depression and inflammation are reduced, a lot of times the HPA axis is less activated so it's easier for people to get quality sleep. Unfortunately, the TNFs, the biologics are also associated with the development of a certain type of rare white blood cell cancer in adolescents. Like I said, none of these are a panacea. It's not one of those things that you can say there's no side effects. There's side effects to just about everything. It's a matter of weighing the odds. I could not find in the article or in any of the articles on the biologics what percentage of people that take the biologics do develop this cancer. They say it's rare. So my assumption is that it is pretty rare even in the youth who do take it to develop this cancer. But it's important to know that it is one of those possible side Effects Interventions Exercise is the key to reducing the symptoms of arthritis and maintaining a range of motion. According to the cdc. You want to use SMART guidelines. We are going to leave this to the medical professionals, but it's important to know so we can support youth in this process. SMART stands for start low and go slow. You know, start by walking, you know, down the street and back and then if that doesn't bother you, maybe the next day. Walk around the block. Modify activities when symptoms increase, but try to stay active. Activities should be joint friendly. You don't want to be running or doing high impact aerobics. You know, swimming, bicycling. Things that are joint friendly are going to be more helpful. Recognize safe places and safe ways to be active. Work what Encourage the youth to identify places where they feel physically and emotionally safe and encourage them to talk to a health professional or certified exercise specialist to identify things that they can do that are helpful to their recovery. Federal and state programs may provide assistance with school accommodations or services. The rheumatologist will have a list of those and consult again with the rheumatologist about support groups and and camps for kids with juvenile arthritis. The Arthritis Foundation Healthy Joints Matter CDC Recommendations There are a lot of resources here as well as the Childhood Arthritis and Rheumatology Research alliance or cara. So there are a lot of resources that we do have available to give to families. What's really important is as mental health providers. Mental health is one of those triggers for flare ups. So if we can help people develop good, healthy habits to prevent distress, excess distress, we're always going to have a little distress to prevent excess distress, to prevent clinical issues, then we are going to reduce the chances of flare up or at least reduce that risk. For factor. We can also provide youth tools and knowledge for cognitive and interpersonal and physical ways, things that they can do to improve their health, improve their happiness and mitigate flare ups when they do occur. And Jerusha points out that some of the psychotropic meds do cause fatigue in a lot of people. Some of the antidepressants, definitely the antipsychotics will cause fatigue. So if you have a patient who is already taking a medication, again look for the side effects and how it's impacting that particular client and encourage them to advocate for themselves with their physician or get a release sign so you can have a, you know, team conference. Are there any questions? 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