What To Do When Multiple Diagnoses and Treatments Don’t Lead to Solutions

Episode Transcript

Hi everyone, welcome to the show. I’m Dr. Nicole, and today I’m answering a question from one of you. I get a lot of questions from all of you each week, and this is a great way to get to answers that many of you can use. A topic that comes up pretty regularly is around what to do when your child is struggling, is having symptoms, and nothing seems to be working. Or another version of that is that you’ve had your child seen by many different kinds of professionals, maybe even gotten multiple diagnoses, but nothing is leading to improved behavior or other kinds of symptoms. So today’s question, from Josie and Mark, really gets to this important issue. They write: “Our son has had challenges since he was an infant. He has never slept well, he’s a fairly picky eater, easily upset and has no frustration tolerance. His behaviors have steadily gotten more challenging as he’s gotten older, he’s now 10. He’s smart and can do academic work for the most part at school, but struggles with his behavior there. He’s also pretty difficult to get along with, and doesn’t have friends because of that. We’ve brought him to a lot of different professionals over the years and have been referred to various places for counseling, medication, social skills groups, and other kinds of things. He has been given several diagnoses: ADHD, ODD, DMDD anxiety, and even ASD has been mentioned, but nothing really seems to fit. None of the recommendations have helped improve the challenges very much. We are at a point of feeling very frustrated and overwhelmed, as he’s getting older and we really don’t know how to help him. Is more counseling the answer to work on some coping skills? Are there other medications to try? We’re open to any suggestions and appreciate your insight.”

Well, Josie and Mark, I’m glad you asked the question. It’s an important one to be asking, and I know that so many of you listening can relate to what they are talking about here, about the experience of having a child who is struggling, trying to do all the right things, following all of the recommendations, and not feeling like you’re really getting the results that you need to be getting. So let’s start, as we always do, with the big picture of what’s going on here. First of all, we need to understand that a child’s symptoms, their behaviors are kind of like an iceberg. They are what we see above the surface of the water. So if you think about an iceberg, we’ve got the part that we see above, but then we’ve got a whole bigger part beneath the water. The behaviors, the symptoms, are just the smaller part above the water. And then underneath, we’ve got that huge part that is all of the things contributing to the symptoms and behaviors that we see on the surface. The behaviors and the symptoms on the surface, obviously that’s what we tend to notice and pay the most attention to, but we need to understand that there’s all these things going on underneath there. For example, let’s take aggressive behavior. Aggression can be due to a lot of different underlying factors. It could be unresolved trauma. It could be suboptimal levels of omega-3 fatty acids or another nutrient. Could be poor sleep, could be family tension, lots of things, right? Let’s consider oppositional behavior, attention problems, anxiety, mood swings. Whatever it is that we’re thinking about, those are surface level symptoms and behaviors. They do not tell us anything about what’s going on underneath or what is contributing to or causing them. So this is a really key thing to understand because when your child is struggling and it’s recommended that you go and maybe get an evaluation or talk to the pediatrician or have a professional look at the situation, often we think that that’s going to lead to some sort of diagnosis or some sort of definitive treatment plan. But that’s not really the case because if you go down that path and, let’s say, you get an evaluation, or you talk to your child’s primary health care provider and they give a diagnosis, the diagnoses that we use in mental health are just names that we give to groups of symptoms. So often, parents will really come into my clinic very frustrated because they’re like, “We waited four months to get in for an appointment to have an evaluation, and then we ended up with this label and this report that really just tells us everything that we told the professional about our child. We already know all the symptoms and all the issues.” Okay. So now we have this name, we have this diagnosis, which may or may not be helpful for getting some support or accessing services or things like that, but they don’t tell you what’s going on beneath there. Remember that mental health diagnoses are subjective. They are the practitioner’s opinion and perspective of what is going on with your child on the surface, what should we call this combination of symptoms that we’re seeing. So they’re subjective. They don’t tell you what’s going on beneath the symptoms, and so unfortunately, they really can’t lead to a very defined course of treatment because they’re not telling us anything about what’s actually causing, or contributing to, the behaviors and the symptoms. 

So here’s where this becomes relevant, especially in a situation like Mark and Josie are describing here, where they’ve been to a lot of different professionals and their child has been diagnosed with lots of different things. That typically means that the root issues that are leading to these behaviors and these symptom challenges have not been identified. A child who comes into my clinic who has alphabet soup behind their name: All different kinds of diagnoses and labels, lots of different professionals have looked at their clusters of symptoms, have looked at their histories and have said, “Oh, this is the name that we would give what’s going on.” When that happens and there’s all these different opinions, and more and more labels getting added, that is a big red flag to me that nobody yet has really investigated or figured out what are the underlying driving factors that are leading to these symptoms? And if you’re a parent who’s been in that situation where it seems like everywhere you turn, people just want to add more labels or diagnoses, but it’s still not getting to the root of the matter, your child still isn’t significantly improving, that’s what’s going on there. Nobody has really yet identified what’s actually going on. What is underneath the iceberg here? What actually do we need to be treating? And so that’s important to understand, because that leads then to, “Okay, what do we need to do to really get to the heart of this?” 

Same goes for — maybe your child just has one diagnosis or maybe they don’t have a diagnosis, but you’ve been doing a lot of really good quality therapies and interventions. You have educated yourselves, you are implementing good parenting strategies, you’re working with coaches or therapy professionals or the school, and you have good, consistent interventions and supports that are being implemented, but things aren’t consistently changing for the child. So there’s all these supports and therapies in place, but there isn’t consistent improvement for your child, or maybe they improve for a while, but now they’ve hit a plateau and they don’t seem to be moving forward anymore. That also is a big indicator that there are some unidentified issues getting in the way, that we’re not looking further beneath the symptoms, we’re not looking at what’s going on in those deeper levels of that iceberg to see what actually needs to be addressed. And so, when we understand this, then that leads us to say, “Okay, we need to be digging deeper here, regardless of the label, regardless of how many treatments we’ve done, regardless of whether my child has a diagnosis or not. I need to be digging deeper to really understand what’s actually going on here.” So that’s in the big picture, how we need to be thinking about this.

Now, what do you do? So in this situation, we need to go beyond the symptoms and labels and we need to start peeling back those layers and looking beneath at what’s going on under that iceberg. So how do we do that? Well, first of all, it’s understanding that, “Okay, this isn’t just that my child is doomed to have these kinds of issues for the rest of their life. It’s not that there’s nothing that can be done.” It’s not that “My child is so complex and so problematic that I should just feel hopeless about this.” No, we need to understand that we can look deeper and that’s where the solutions are going to lie. Understand that everything in your child’s history is relevant. Too often, when parents bring their kids in to see practitioners around behavioral or developmental or mental health issues, practitioners are only looking at the surface level behaviors, and anything that they think in the history is related to the symptoms. And unfortunately, many practitioners — most practitioners in the realms of medicine, mental health, and education are not really trained in understanding, for example, that everything in your child’s physical and medical health history is completely relevant to what’s going on with their brain development, what’s going on with their behavior, what’s going on with their learning. So you need to understand that. That if someone has not taken the time to connect the dots between physical health history — So maybe your child’s history of recurrent ear infections in the first few years of their life, or their chronic constipation, or medical kinds of diagnoses they’ve been given, and what’s going on with them in the realm of their development and their behavior, those dots need to be connected. Everything in their history is relevant: Physical health, any kinds of traumas, family history, and genetics, diet, sleep, lifestyle, parents’ stress level, and the home relational environment, school environment — all of these things are very, very relevant to understanding what’s going on beneath the symptoms that your child is experiencing. So now that you understand that, that allows you to seek out practitioners to help you connect the dots, and also helps you raise these things with practitioners who maybe aren’t asking about or looking at these things, for you to know to bring these things up.

You also need to understand that the brain and the body are totally interconnected. So we have to look at all of these pieces to understand what’s contributing to the symptoms. Again, things like medication that your child may be on for any reason. Any medications that they take for any purpose, we need to look at that. We need to look at exposure. Things they are being exposed to in the environment. These things all become relevant. And again, understanding that most healthcare practitioners, most people in medicine, mental health, education, child development, any of these things, they’ve been trained to look at what they do through a very narrow lens of their particular field, and they’re not understanding how to look deeper and connect these dots. And of course, that becomes a real frustration and a real problem for you as a parent and for your child. So you need to educate yourself. You need to learn more about these connections. You need to be advocating and talking with the providers currently working with your child and your family about looking deeper. If these are really helpful, appropriate practitioners, even if they don’t understand how to look at all of this, they’re going to be supportive of you, they’re going to get curious, they’re going to research right along with you, and they’re going to partner with you and figuring out solutions and who to refer you to to get help for these things. That’s what quality practitioners do. We’re willing to acknowledge when we don’t know something that would be important, and to partner with patients and families and figuring that out. So find practitioners who can help you do this, raise these concerns with the current practitioners and ask them to partner with you in seeking out solutions. These are really the to-do steps for this. And hopefully, if you’re working with a lot of practitioners at this point, or your child has been through a lot of therapies, hopefully you can identify at least one or two of them who may not understand how to connect these dots, but will partner with you in seeking out more information and solutions. There are so many wonderful resources available now for doing that. It’s been one of the great things over the last decade with the internet making more of this type of information available to parents, but you have to know to look for it, right? So hopefully this gives you some ideas of some ways that you can start looking deeper at what’s going on with your child and connecting these dots. And I have also — because I’ve been asked about this so, so, so often, I have created a new workshop for all of you around this called Digging Deeper: Identifying Root Issues That May Be Contributing to Your Child’s Attention, Anxiety, Mood, Learning, and Behavior Symptoms. I cannot possibly see all of you out there who need the help that my clinic provides, and so in putting together workshops like this, it’s a way to get all of you started with the information that you need to dig into these issues. So this workshop is for any of you who are parents — professionals are welcome to take it too, but it really is geared towards helping parents. If you have any age child, any diagnosis or symptoms that your child may be having in this realm of neurodevelopment, behavior, learning, mood, attention, any of those kinds of things, and even if your child doesn’t have a diagnosis, that’s perfectly fine, too. What I walk you through in this workshop is the 12 main areas that you need to be looking at and considering in order to identify root causes and contributing factors for your child. So whether you are new to all of this and just noticing symptoms in your child and want to more quickly get to the root of what’s going on, or you have been on a merry-go-round of evaluations, treatments, providers for many years, this is going to help you hone in on where you need to be focusing. Each section of the workshop gives you specific things to consider, gives you information to investigate further, helps you know how to talk about these things with your providers and gives you specific action steps. So it’s prerecorded, and I did that on purpose so that you can go through each section on your own schedule, at your own pace, refer back to it and have it categorized in ways that just makes it easier to access and refer back to. I want to be clear: This is not a course or a workshop about how to treat all of these things. That would be impossible to put in one workshop. Although I do have other workshops about how to address specific symptoms and I will be coming out with more of those, but this Digging Deeper workshop is the most important starting point, because it is focused on helping you hone in on what’s really going on to cause and exacerbate the behaviors and the other challenging symptoms you’re dealing with. It’s absolutely the key, because if you don’t know what’s really going on, you can’t put together a treatment plan to really address the situation, and the whole purpose of this is to save you time, money, and energy so that you know what needs to be addressed. I fully recognize that many of you don’t have access to practitioners in your area who are skilled at doing this, who on their own are able to really guide you with knowing what to look at, what to test for and what might be happening, so that’s why I created this workshop, to be able to help more of you with that. There are videos, you can also listen to the audios if you prefer that, there are handouts included. I’ve also created an extensive resource guide that will give you resources where you can learn more about the issues and the areas that you discover are relevant to your child, as well as specific treatment approaches and things that may help. Looking at root causes is absolutely one of the most common things that you all ask me about, and so hopefully, you’ll find this helpful. You can go to www.drnicoleworkshops.com that W W W .D R N I C O L E W O R K S H O P S . com to get all the details about that. You’ll get the details there, and for those of you who are podcast listeners, I wanted to extend a special opportunity for you. I’m going to gift a free Private 30-minute Q&A call to one parent who purchases the workshop in this week. The workshop is just launching today, so it’s there, it’s on the website for you to access, and all you need to do for a chance to get the free Q&A call is purchase the Digging Deeper workshop before next Monday, September 20th, 2021. So when you purchase the workshop, you will automatically be entered for a chance to get the Q&A call. We will randomly select one winner from all of the purchases between now and then. So, I hope you check out the workshop, I hope you find it helpful, and I look forward to chatting with one of you individually for a 30-minute private Q&A call soon. So go to www.drnicoleworkshops.com for all the details. 

As we wrap up here, I just want to share two other things. The first is that in almost 25 years of practice, of working with kids with challenging needs and their families, I have yet to meet a child where we couldn’t identify underlying issues that had not yet been found or addressed. And I have worked with hundreds, if not thousands of kids at this point in the various places that I have practiced, and it is always the case, even for kids with very, very severe issues, who have been to see a lot of practitioners. When we dig into these things, when we understand all the areas that we need to look at, and we focus on connecting the dots, I’ve always been able to find one, if not several areas where we can really start to impact, change and see progress. So I say that to you because I want you to know that there is always hope. There is always a reason for you to keep hope that your child can improve. It can be a winding path, it can be a challenging path for sure, but it is absolutely worth continuing to dig deeper to get to the root or the roots of what’s happening. There are always solutions. We just need to stay curious, we need to understand how to keep looking and we need to maintain the hope and the expectation that kids, no matter how significant their issues, no matter how long they’ve been going on, that they can do better when we are supporting the right things and getting to the root of the issues. So I say that to provide motivation, to provide support; I empathize greatly with any parents and family and child who are struggling with these things, and I want you to always keep the hope and the expectation that things can improve when we’re addressing the right issues, and for you to continue to advocate for your kids. They deserve that. Your family deserves to get the care that’s needed, so don’t give up. 

I hope that this information and this message is really helpful to Josie and Mark, and all of the rest of you who are struggling to get to the root cause of your child’s challenges, struggling to get those underlying issues addressed. Remember, if you have a question you’d like to hear answered on a future show, email it to support@dr.beurkens.com. Please put “Podcast Question” in the subject line, that will help us out.   I so appreciate you all being here and listening each and every week, and look forward to catching you back here again.