Transcript - CP, Mental Health and Psychotropic Medications


Dr. Heather Riordan (00:00:08):
Absolute pleasure to be with you guys today. Our goal is for this to be conversational, so please, if you guys have questions, don't hesitate to ask. We're going to have quite a bit of time at the end of our talk to make time for discussion and questions, but please, we want this to be about what you guys need to get out of it, not necessarily what we want to put on our slides. Okay. Before we get started, just a few disclosures, both Dr. Hauptman and I have a few conflicts of interest, nothing that pertains to this talk. I think the other really important piece for us to discuss is that most of the treatments we'll be talking about when we do get to the part about medications are considered off label. What that means is that the medications are not always FDA approved for the indications that we're discussing, and that's true of most things that we use for cerebral palsy and many things that we use in the world of mental health as well.

So we just want to make sure that disclaimer clear. So we're going to start out with an introduction to kind of the concepts of the intersection between psychiatry and neurology. I think very often, both in the way that it's treated and the way that we talk about, we think about them in very different disciplines, but they intersect a lot as we're going to talk about, and I think that's important when we're talking about psychiatric symptoms in cerebral palsy because we can't take it for granted that it's the same or that we can approach it quite the same way or think about the same way as we do it in neurotypical population. We're going to then segue into talking about different things that we can do to treat behavioral health symptoms and how to address that. We're going to go through a case example. Then as I mentioned earlier, we're going to open it up to questions, conversation, discussion. I'm really hoping that we'll be able to have some good thought generation there, not just from answering questions, but also learning from each other as a group. Go ahead.

Dr. Aaron Hauptman (00:02:08):
Again, thanks so much for having us and for inviting us to speak on this subject. We wanted to just start off with talking about what Neuro Psychiatry is because it is a medical subspecialty that people may not even have heard of and it exists in some places, but less so in others. So I'm a neuropsychiatrist. This means that. So neuropsychiatrist are clinicians who work with individuals and their families who have really a broad range of conditions that affect the central nervous system that also impact cognition, emotion, behavior, and consciousness. So these are things that a lot of times psychiatrists may not be as like people who are purely trained in psychiatry. Once you have potentially a physical cause or overlapping with neurological symptoms, they may be less comfortable with, and a lot of neurologists may not be trained or as experienced in working with the behavioral or emotional manifestations of the conditions that they're otherwise working in.

So we try to integrate these things and this diagram here to the right is just giving a few examples. It's a little bit hard to read, I apologize for that. But in what these interrelationships are between underlying causes, especially for individuals with cerebral palsy, things like genetic predisposing factors, perinatal factors that can be impacted by genetics. Then the subsequent fallout of what can happen to one's brain with epilepsy, pain, spasticity, all of these other things, how that then interacts with psychosocial factors, things like sleep, all of those experiences. And then the superimposed added on thing of the medications we use to treat any combination of those and both the positive benefits they can have, but also the detrimental effects. So this is the intersection that we're talking about.

Dr. Heather Riordan (00:03:59):
So no talk of cerebral palsy conference would be complete without actually defining cerebral palsy. But I do bring this up, not because you guys don't already know this, but because I think it's important to segue in terms of how we're thinking about cerebral palsy in the context of mental health. So as you know, cerebral palsy is a group of permanent disorders that affect the development of movement and posture, and they're non-progressive, meaning that we don't expect to have changes in the actual brain architecture, more brain injury over time. But as you all know, the symptoms may not be perfectly static over time. And sometimes as people get older, those symptoms can kind of flux or change, and we'll talk about that a little bit more today.

Cerebral palsy is not uncommon. It occurs in one in four out of every thousand children in the US and those children grow up and as you heard about earlier, become adults. So a lot of people with both children and adults in the US with cerebral palsy, we do know that black children are affected more than white children. That has to do with some very complex factors. But it is also important when we're thinking about access to things like mental health services, things where there is a lot of disparity there. We also know there are significant impacts on the physical, social, mental, and economic health, both of the individual and of the family unit. Now, I just want to pause here and say, today we are focusing on the individual cerebral palsy families. We see you. We know this is hard, and we know that your mental health is important too.

So while we're not going to focus on that today, I just want to take that moment to let you know that we recognize that, okay, cerebral palsy comes in different flavors. So the most common one is spasticity, just that velocity dependent patch. We have dyskinetic, which can either be dystonia, where you get these fluctuating movements going from one posture to another, chorea, which are more of these twisty or flowy movements that go from one joint to another. And then ataxia, which is difficulty with coordination. And as you all know, many people have a combination both just to make things trickier when we're thinking about things. The reason that this is important when we think about mental health symptoms is just depending on where the dysfunction or injury in the brain is, that then relates to certain types of motor symptoms. So if you have, for example, an injury deep in the gray matter of your brain, you're more likely to have those disconnected symptoms where if you have an injury in the cerebellum, you're more likely to have ataxia. Similarly, these parts of the brain are very important in our behavioral and mental health. So for example, if you have a lot of injury to the frontal lobe, you may have more problems with executive function. A DHD, attention. There's a lot of our conditions that affects the basal ganglia oftentimes are associated with OCD anxiety, mood disorders. So we can't just think about mental health from a behavioral standpoint or environmental standpoint. They're actually important biological factors that are going into that relationship between cerebral palsy and mental health.

Similarly, this is a topic that you guys may be hearing more about. It's a really big buzz in the neurological world. We're finding that a lot of people with cerebral palsy have either a genetic cause of their cerebral palsy or genetic factors that contributed to the cause of their cerebral palsy. So up to 23% are going to have an etiology found when they get whole exome sequencing, which is kind of a big broad look at genes. When you look at something to look if there are big chunks that are duplicated or deleted or something called a microarray, five to 9% there. So that's not trivial, and the reason is Dr. Hauptman is about to discuss many genetic conditions with CP also have neuropsychiatric conditions. So we can't just look at brain architecture. These genetic predisposing factors may also be a risk factor for mental health conditions.

Dr. Aaron Hauptman (00:08:08):
So dovetailing on what Dr. Reardon is saying, you'll hear us talking repeatedly about this layering of different factors that can contribute to issues with surrounding mental health for individuals with cerebral palsy. So while there's a lot of buzz in the last couple years about certain potential genetic predisposing or contributory factors for developing cerebral palsy, there's a whole separate literature often involving some very similar or identical genes within the mental health and neurodevelopmental literature. So this is just a few, we could have pulled from 20 or 30 different genes for this slide, but we picked a few that we both have some more experience with and felt like they kind of exemplified this point. So on the left you'll see a few specific genes. In the middle column you'll see the associated motor manifestations that tend to be more commonly described for individuals with those mutations who develop cerebral palsy.

But then on the right we see from again this kind of separate literature that there are psychiatric and behavioral phenotypes like a lot of neurodevelopmental, neuropsychiatric and other associated mental health and behavioral symptoms associated with some of those genetic causes. So the most common and sort of the easiest for us to talk about is at the bottom there's a condition called 22 Q 11 deletion syndrome, which has fairly recently been associated in some individuals, a small percentage of individuals, but certainly with some individuals who have cerebral palsy. There's an entire literature on that population and their high risk of psychosis and schizophrenia, autism, anxiety, ADHD, and other neuropsychiatric symptoms. So when we then combine these, we're sort of trying to add to this layering of potential factors that could be contributing to somebody's mental health beyond the things that we commonly think of, the psychosocial effects, pain, sleep, all the things that we might more commonly associate. This really fleshes out how many different pieces are part of this puzzle. Oh, this

Dr. Heather Riordan (00:10:27):
One's here. Yeah. So again, adding well to those layers In addition to the genetic, the areas of brain injury, people with cerebral palsy oftentimes have other co-occurring neurological conditions, which in and of themselves are highly associated with neuropsychiatric disorders. And this is important because a lot of times these other disorders have more research. So it helps us as a team or as a community lean into those to justify why we need to talk about this important topic. So we know that stroke even 15 years out has a very high rate of anxiety disorders and depression epilepsy. Similarly, almost 40% of people have co-occurring psychiatric disorders, and many of those people will say those psychiatric disorders bother them more than the symptoms of epilepsy themselves, which I think is really important for us to be listening to what's actually bothering people with these conditions. Importantly, in both of these situations, there's data that shows that that's above and beyond what we can explain by the level of disability. So for example, in the epilepsy study, they compared this to people with children with diabetes and they found that even still controlling for all the medical stress that come with diabetes, the people with epilepsy had a much higher level of anxiety. We talked about genetic disorders and as we're about to talk about cerebral palsy, while there's a lot we don't know about mental health and cp, we do know that mental health disorders are very common occurring in up to 60 in some studies.

Dr. Aaron Hauptman (00:11:59):
And so we've talked about we tend to think about mental health and sort of neurological or motor health in these very siloed ways, and it really is such an artificial distinction in so many populations for so many of the patients we work with, but in particular for folks who have cerebral palsy, the relationship between these two sort of artificially separate columns really cannot be separated to describe where somebody's motor symptoms and the impact and effect from something like anxiety, depression, insomnia, where one starts and the other stops is really impossible and they are so interrelated that for us to manage one without even thinking about the other for one from a clinician's perspective means that it's much harder to provide care and the care that we're providing is going to potentially been inadequate. And we know from individuals and from families' perspectives, it often leaves so much to be desired in terms of really fully appreciating what's going on.

Furthermore, when you try to separate something like a neurologist managing somebody's neurocognitive symptoms and a psychiatrist managing somebody's say ADHD, that's such an artificial construct that it really makes it impossible to separate those two. So we just want to emphasize that and describe that to really provide person-centered care, we have to be integrating these as much as possible. Spasticity, I think provides such a clear example of this because I think it's very rare that somebody might be sent to a psychiatrist when it comes to a question of spasticity. But from our shared clinical experience, certainly from patients we've worked with together and from a very small literature, but I think a burgeoning awareness, the interrelationship between something like anxiety or depression or insomnia and spasticity is very close, right? If somebody is very anxious, their spasticity may get worse or their increase in spasticity for some independent reason could worsen anxiety and it's very hard to manage one of those without the other.

Then when you add other things like pain, sleep disturbance, and then you pile on the medications that we're talking about for managing any combination of those, it becomes so hard to tease apart many of the medications that might used to treat spasticity can positively or negatively impact mood, anxiety, sleep medications that are being used to treat something like depression could positively or negatively impact a person's spasticity. So it becomes this cycle that at very least we have to try to pay. We may not be able to as much attention as we could pay to it, it might not provide the optimal solution to the problem, but if we're not trying to address these different components of somebody's experience, we're not going to be able to be successful in trying to be helpful.

Dr. Heather Riordan (00:14:55):
Okay, so with that, we want to segue into more in depth discussion about what do we know about mental health in individuals with cerebral palsy.

Dr. Aaron Hauptman (00:15:09):
So to begin with, we just want to acknowledge how small and limited the literature on this subject is. There in the last few years have been more studies, which is wonderful, but it is a very small literature and comes with a lot of caveats and limitations as a result. But you can see just from one study, there's an enormous range of psychiatric symptoms or diagnoses found in children with cerebral palsy, but even at the low end, we're heading to about 30%. So 30 to 60% of children with CP would have significant psychiatric symptoms or meet criteria for formal diagnoses. So we want to make sure to acknowledge that one study pointed out that pain and activity levels were very important, contributing factors for depressions for depression in children with cerebral palsy. So a large component of people's depression may have been mediated through the experience of pain and limitations in activity, which is just crucial for us to acknowledge when we think about sleep pain and other modifiable factors like bullying or social engagement.

These all contribute significantly across the board to the kinds of psychiatric symptoms that can be present for an individual with cp, but don't fully explain it. So it's not as though this is something that is entirely a result of these kind of secondary factors. Going back to our point earlier about the layering of genetic and specific brain regions and all of these different contributions in kids with cp anxiety, depression and behavioral symptoms were probably the most common, but as we look into adulthood, we start to see across the board elevated risks of almost all psychiatric disorders. We'll talk a little bit about adults in a second, but looking at sort of transitional age, and this is a study that looked at kids at seven and again at 11, so heading kind of into pre-adolescence and adolescents to try to see what's happening during this transition.

And it was, I think really interesting and enlightening. So essentially having some psychiatric risks at seven increased your likelihood at 11 as one might expect, and this is just based on the language from the kinds of research measures they used, but it's really important. So behavioral disorders are defined as things like oppositional defiant disorder conduct disorder or A DHD. So things that are thought of as more like externalizing potentially more challenging to the people around you than to you necessarily yourself. And emotional disorders were things like anxiety, depression and those kinds of symptoms. So between seven and 11, the rates of the behavioral disorders was stable, but there was a very significant increase, a fourfold increase in the emotional symptoms as people age. So anxiety and depression seemed to become much more prevalent over time. And this is something that both Dr. Rudin and I have I think a real interest in and kind of are looking forward to more in the literature about this in the future.

But there was a little bit there was looking at, well, can we think about CP subtypes? So whether a person has unilateral versus bilateral dyskinetic versus ataxic cp, what does that tell us about certain risk factors? And it seemed like there were non-significant predictors of psychiatric symptoms. So it might be that in larger studies there could be more information to pull out of that to help us predict. But at the time being it doesn't seem as though having specific subtypes of CP gives us a huge amount of information about what person might be at risk for.

And then finally again, to the point before modifiable factors, social supports, community engagement, and then things that potentially we can impact medically, sleep pain and activity level again in adolescents and then in adults play a significant but not absolute role. So within adulthood we see higher rates of almost all psychiatric diagnoses compared with adults without cp. And this is a point that we like to bring up a lot because whereas there are a few diagnoses that clinicians tend to pay a fair amount of attention to depression, anxiety, we see even with diagnoses that we're a little bit less tuned into schizophrenia, bipolar disorder, other diagnoses like that rates are elevated for individuals with cerebral palsy. So it's something that we just try to emphasize the importance of clinicians and families being wary of being attentive of not in order to make people anxious or nervous for the future, but more just to realize that those symptoms should be part of the conversation too, and that this is not limited to just talking about things like anxiety or depression.

Dr. Heather Riordan (00:20:21):
So when we think about the prevalence of neuropsychiatric co-morbidities, we see again, a lot of overlapping through things. And it's important because we've talked about the biological rate of epilepsy has a high rate of anxiety, things like that. But some of these things have a direct effect on it in other ways. So for example, pain is incredibly common in this population and we know that pain has long association with anxiety or depression. So addressing that is there. Communication disorders are very common in our individuals with cerebral palsy, both in terms of not of dysarthria expressive language disorders where you have trouble getting words out, but also are we giving people the language they need to be able to communicate their emotions and things like that. Similarly, A DHD is very common up to 20% for people with cerebral palsy. And then when you take it out and a DHD is a diagnosis, but there's also something called executive function, which is basically all the tasks we need to function in life, like starting tasks, finishing tasks, managing our emotions, things like that.

And when we look at all of those things together, 40% of people struggle with these things. So that also will then feed into it. If you're struggling to keep up on life, if you can't get your stuff done at school, things like that, that's going to contribute to some of those things like anxiety, depression, so they all feed into each other. So just to kind of step back and summarize what we've been talking about historically, there are kind of three ways that people approach mental health and people with cerebral palsy. One is you can look at it as under a shared etiology, the brain injuries, brain malformations, genetic disorders that put you at risk for cerebral palsy but also puts you direct risk for mental health disorders. There are shared risk factors that we have. For example, prematurity is a risk factor for mental health disorders as well.

For cerebral palsy, we talked about epilepsy, birth complications, same thing. And then there's this cause and effect, which I think is the easiest association we think of, which is these people with cerebral palsy deal with a lot, right? They just do. There's medical stressors of frequent hospitalization, frequent surgeries, having to come and get Botox, doing therapy, missing out on social things either because they're in therapy or in the hospital or because the world's not set up for them to be able to participate appropriately, especially as they get into adulthood. Bullying is a problem and something I haven't seen literature, and I like to call it the grief of normalcy that a lot of our kids hit, especially around that 11 to 15 years of age, where at that age everybody just wants to be typical. Whatever typical means, I don't know, but that's what they want to be. And when you have a very visible disability, as big as a very hard not to be that typical that they want to be. So it is tough times. So we could think about all these things separately, but the reality is it's more like this. So if we really want to focus on somebody's wellbeing, we need to see this global picture and we need to see the way all of these things are interacting together to affect somebody's mental health, their participation, their wellbeing.

So with that, we're going to kind of again segue into some approaches for treatment. We know that this is more common, what can we do to help?

Dr. Aaron Hauptman (00:23:49):
So we'll start out with just talking about some sort of general principles, things that we always recommend to clinicians or to our trainees, but also we really want families to just be thinking of and maybe trying to help clinicians remember as well if necessary. So first, when somebody with cerebral palsy comes in with some new complaint or new concern or worsening or changing of an underlying symptom, we really want to make sure that this is not the immediate result of some kind of modifiable medical condition. Common ones that we very frequently typically see, things like GI concerns, constipation, so common, other medical illnesses, pain or occult infections. These kinds of things come up so often or conditions that could be completely unrelated to cp, but because of challenges, communication, we might miss things like, yeah, thank you, gallstones, other infections, dental issues, these sorts of things.

So we always try to really have as much collaboration as possible with other specialists in terms of diagnostic and treatment options. And we'll talk a little bit more about the specifics of some of these and then focusing on psychoeducation both with clinicians and with families and focusing on family-based interventions and psychotherapies prior to thinking about things like behavioral medications. Not that there's not a role for those, not that those things cannot be incredibly helpful, but the last thing that we want is for somebody to come in with an exacerbation of constipation and for us to start a medication that would definitely worsen that or for somebody to come in with a behavioral issue that is a manifestation of a life stressor or something that could really be managed through different forms of talk therapy or behavioral interventions. And for us to focus only on the medication sides of that, that is going to be less effective from a treatment perspective and also increase the likelihood like we looked at before, increase the likelihood with side effects and all of these relationships to potentially worsen various symptoms.

So then we try to take into account what medications somebody is on if they're on medications already and seeing where we can optimize that overlap. If somebody is on a seizure medication that also potentially at a higher dose could be helpful for certain behavioral symptoms, we would probably rather slightly tweak that medication than add on a whole new medication in a different category, for example. So we try to take advantage of those, consolidate or minimize therapies, try to pull off medications where it could very well be a side effect of those medications, and that really often requires a pretty in-depth conversation between clinicians. It can be challenging if you have an argument between two different specialists about whether or not the medication. The other one is prescribing could be contributing to worsening symptoms. So just being aware of what those conversations are like and that they can get complicated in their own. And then where possible we try to base decisions on the literature. If things are FDA approved, wonderful, often they are not. Often there is some small literature, sometimes there is not, and we're going based on our own clinical experience or people who have been doing this for longer and who are wiser than ourselves. So there's this kind of stratification for different ways to approach these questions.

Dr. Heather Riordan (00:27:20):
So when we think about strategies to approaching mental health and individuals with cerebral palsy, I think the first thing, like we mentioned, we want to make sure the psychiatric symptoms are not due to an underlying cause like pain, intrathecal, baclofen pump malfunction, shunt malfunction, common things like dental problems, hearing ear infections, things like that. And obviously we want to make sure that we're not the ones causing the problem as physicians, right? With medications or the treatments we're prescribing. Collaboration is so important in terms of thinking through these things together. You guys know more than anybody that oftentimes you're left to be the ones to try and be the in-betweens as much as possible. Trying to help people get together and get on the same page if you're hearing conflicting things from different people is really important because psychiatric symptoms can worsen physical symptoms. If you're very anxious, that'll kick up your dystonia, for example.

But the other way thing could happen too, where having a psychiatric diagnosis can give us an opportunity to treat in different ways that we may not have thought about before. We always want to maximize the benefit of the medications. We already on many people cerebral palsy already on a long list and the more medicines you add, the more risk you're at for interactions between medicines. So we want to take opportunity for anything we can kind of use and take advantage of and then minimize side effect profiles whenever possible. When we think about Dr. Hopman talked about behavioral treatments, and I think we don't talk about this enough, we medicalize cerebral palsy so much that we don't think about these things like we should, but there is a little bit of evidence for certain things in cerebral palsy. Certainly there's a lot we can extrapolate from the general literature.

When we think about behavioral intervention, there's kind of two big categories. One that's focused on the parent and the family and one that's focused on individuals. When we say focus on the parent or family, I want to be clear this is not because the mental health is your fault. This is because people who have special needs special interventions to be able to help them to be able to work through this. The same way that somebody who has anxiety for anything benefits from having help through there, but parents have the ability to be able to be there 24 7 with their child as a therapist can only be there once in a while. So similar to when you go home and take exercises from pt, this allows you to take some skills from a therapist there and bring those home as well. There's a few different programs that do have a little bit of evidence, which is really exciting.

There's not a lot in this talk that has evidence, but there's at least one study that shows that the stepping stones part of this positive parenting program or what we call the Triple P can be helpful for younger people with cerebral palsy as well as this acceptance commitment therapy can be helpful. There are some more general principles that can be definitely helpful. Parent management training and parent child interaction therapy, which is a very cool program where where a therapist will watch you working with your child and give you tips, which can be very helpful. The other side is individual focused therapy. So the most well studied treatment for our anxiety and depression and other mood disorders is cognitive behavioral therapy. It can be very useful for our patients who are able to communicate sufficiently and engage in in a meaningful way if you have somebody where they're being kind of triggered in their mood symptoms or anxieties being triggered by sensory components because that can happen. Working with an OT to work on sensory symptoms can be helpful. Similarly, sensory symptoms can sometimes affect attention and mood, attention focused in other ways. So sometimes it can be helpful for that with executive function. And then for those people who have co-occurring autism or significant intellectual disability that makes it hard for them to participate in some of these things like cognitive behavioral therapy, applied behavioral analysis can sometimes be helpful.

Dr. Aaron Hauptman (00:31:36):
And one thing I want to make sure to be clear about is the lack of, we don't have a large list of specific therapies to recommend, not because there's evidence that these are not helpful, just there's a lack of evidence across the board. And it's something that the psychotherapy literature I think often struggles with when we have populations that are so broad and include people with such different capabilities and challenges that it's very hard to come up with single therapeutic interventions that could be applied to everybody across the board. So it makes it difficult to give a global recommendation in the way that we do in terms of like, oh, well the treatment for depression in the general population is cognitive behavioral therapy first. It's just harder for us to do that.

As Dr. Reardon said, it's crucial from the clinical perspective for us to engage both the patient and family in these interventions. And a lot of that focus is going to depend on what the individual's communication and weaknesses may be, as well as what the particular concern is that will guide a lot of our decisions about what kind of therapeutic interventions we might focus on. One thing, as any part of integrating behavioral therapies or psychotherapy into treatment, we need to make sure that we understand for an individual how communication and intellectual function or intellectual disability may impact behavior. So we will often try whatever the therapeutic modality that we're focusing on, making sure to integrate augmentative communication, visual prompts, storyboarding, and then trying to include language around emotions and cognition in sort of our standard parts of routine care. This slide over on the right comes from specifically working with populations who have autism spectrum disorder, but this is a kind of nice standin in general for certain ways to approach particularly like aggression, agitation or violent behavior in individuals who have a neurodevelopmental disability pretty broadly.

So what often happens is as clinicians, we may not hear anything about this for a while until there's some severe fallout of some of these behavioral challenges, and then it becomes heavily medicalized because the things we may have to offer are medications, often fairly intensive ones to try to focus on those episodes of acute dysregulation. The goal of especially family-based therapies are to try to figure out how do we recognize what's leading up to those? What are the antecedent events, what are the triggers for these things that start to push the ball over the edge and start rolling downhill? And then how do you intervene at different phases of this because it's going to be different. The thing that you have to do to keep somebody safe and comfortable and make things improve when somebody is at that very a hundred out of a hundred place in terms of an episode of aggression, those kinds of things are going to be very different from what you try to put into place as you're just starting to notice those warning signs. And so having a plan sometimes even written out for, well, when this happens, we do this. When this happens, we do this. So you really have a plan for different phases along the way for how you might intervene from just a behavioral perspective. That's just one example of how some of those behavioral techniques might be integrated for this particular question of especially kind of more like agitation, aggression or self-injury.

Dr. Heather Riordan (00:35:15):
So when we think about different conditions, we're not focusing as much on anxiety depression in this particular slide because the things aren't just helpful. But we wanted to put out some ideas for you guys about different treatments for different symptoms and how we might pursue this. So I think a good example would be our self-injurious behaviors. So if somebody is having self-injurious behaviors, we'd first of all start out with our behavioral techniques, safety interventions and try and optimize what we can there. We want to make sure that there's nothing like pain that's leading to that self-injurious headaches. If they're knocking on their head, is it because they're having headaches or shunt malfunction? That would be important to know and make sure that we're giving them opportunities to be able to communicate their needs as much as possible, because you can imagine how frustrating that is to have something that you can't express. If that doesn't work, we might start with some medications that have low level of side effects and then kind of go up from there to things that may have more side effects, but maybe are working in a different way that may be more effective for that individual.

Dr. Aaron Hauptman (00:36:27):
So this is not a comprehensive slide by any stretch of the imagination, and almost everything here is off. But this can be helpful just to think about in terms of first, second, and third line treatments. We like to use this in a lot of different talks with variations of this for folks with different neurodevelopmental disabilities, because often clinicians really do have their sort of go-to medication that they tend to focus on, but for having possible options that could be helpful with fewer side effects early on and going stepwise can be I think very useful. And just thinking about different ways in which we can optimize treatment by trying to use as few medications to cover as many possible symptoms as we can. So this slide focuses on that. So this is a chart of a range of different symptoms and a range of different medications. Again, certainly not comprehensive, but looking at potential overlapping benefits of these medications. So you can see where something like clonidine, which is an alpha agonist, historically it's been used for blood pressure but often has an approval for A DHD, but can be used for anxiety or agitation or headaches or autonomic storming, right? You can imagine how you could get a lot of birds with one stone with that medication, or you could imagine each of those being treated with a different medication.

Dr. Heather Riordan (00:38:09):
So on a similar note, we also want to make sure that we're not making things worse and that we're thinking about things. So there are some medications that we might be using for neurological symptoms that may worsen some of our neuropsychiatric symptoms, like Keppra, for example, is what I think most people have heard of that sometimes can increase agitation. Similarly, some of the medicines that we may use for mood disorders or for behavioral symptoms may worsen some of our other comorbidities. So it's very important to kind of keep this in mind again, that balance between potential benefit versus potential risk for each individual patient, for each individual needs. One caveat I will say as we're looking at this slide is that because people, people's whose have had some sort of injury or something different about how their brain is functioning, people with cerebral palsy or other neurological conditions don't react typically in terms of medication.

So that you may find that when you take a medication that usually makes people sleepy, it makes you wired or vice versa. So I've been in this field long enough to what I tell my patients is that's not a typical reaction, but I never say never because I've seen too much. So I think that's important to acknowledge too as we're thinking about potential side effects. If you are seeing that sometimes weaning off the medicine for a little while and then a retrial can help, was it just a fluke or was it really this medication as a way of a proof of concept? You have to be careful the longer you go, the more medicines that you go down, that list of whatever your provider has, you're going to hit those medicines that have more side effects. So sometimes it's worth it to retrial or really be a hundred percent sure that first medicine was causing a side effect before you give up on it so that you're not ending up with something that potentially could cause more problems down that list.

So with that, we'd like to move to a case example of how this looks in real life. So the patient that we want to talk about is a 10-year-old girl. She has a history of prematurity at 26 weeks with a history of intraventricular hemorrhage leading to hydrocephalus that's been shunted. She has a history of seizures secondary to this injury and has spastic hemiplegia, and she's presenting with worsening and pulsivity and violent behavior. So as we're thinking through that, the first thing we want to do is we want to make sure there's not a medical concern that this isn't a medication side effect that we're causing. So we're going to think about seizures. Seizures are actually pretty rare cause of behavioral disorder, of behavioral symptoms, but very rarely if the symptoms are really stereotyped or odd, that can be a frontal lobe seizure. Or if people are having very frequent subtle seizures, sometimes that can come out in being agitated, you just don't feel good.

We also want to make sure there aren't any psychiatric causes. I think it's important to recognize that sometimes symptoms like irritation can actually be due to underlying anxiety or depression, kind of masquerades is that one thing, especially if there's problems with communicating what you're actually feeling. We see that a lot in kids and teenagers, right? Depressed teenagers tends to be really irritable. So that's something we see a lot. And then also look at what psychosocial stressors are going on. Is there something going on at school? Is she getting bullied? Is there stressors at school? Is she struggling?

So with this girl who started a medical workup screening for constipation, infection, dental, or other pain, we wanted to look at the shunts, make sure that that's not malfunctioning. She's not having pain as part of this an EEG, to make sure that there's not something different with her seizures. Since this was an acute change that we were seeing, looking at neuropsychological evaluation to see is there something with school that's not getting addressed appropriately, looking at social and educational factors and then also psychiatric evaluation to look for underlying mood or anxiety disorders, ADHD, things like that.

Dr. Aaron Hauptman (00:42:15):
So fortunately when the results of all those tests came back, this was somebody where no medical cause could be found. So there was nothing that acutely had to be done like managing her shunt or anything like that. Neuropsychological testing actually showed normal range iq, but a very wide split in some of her sub scores. So this is something that if folks have looked at neuropsych testing for their kids or other family members, it can be very confusing because we often have a tendency to think about IQ as one number when in fact it's sort of an average of a bunch of different numbers. And so that one number, especially when the range is pretty broad and the strengths and weaknesses, a lot of peaks and valleys can be extremely confusing because it can look as though somebody is functioning at a higher or lower level than you might anticipate. So in addition, a diagnosis of autism spectrum disorder was given and anxiety and A DHD, which had been suspected were verified. This gives a whole list of potential interventions and tools.

This was an individual for whom I think the conversation with the family was really crucial and really sticks with me to this day because this was a family that really felt like it was their fault, everything that had happened to this child and that the behavioral challenges were their fault. It was a result of bad parenting. And so for us to go through and talk through her MRI, all of the different things that had been part of their experience, the shunt, all of this was I would say one of the most helpful things we could have done because it really contextualized that this was not an issue of fault or culpability or anything like that, but a very complicated child who had very specific needs that we were working on trying to find appropriate solutions for. So that in and of itself was something that felt, that seemed to be particularly helpful. Beyond that, coming up with a new ip, appropriate school setting, all things that I know have been already discussed a little bit earlier today. And then addressing anxiety through first psychotherapy and then antidepressant medication, and then a couple of options for A DHD, so kind of standard psychiatric medications,

Things overall improved kind of rocky over the course of the next couple years, but with a lot of ongoing maintenance, things really went a lot better for this young woman. And then she had another acute worsening of these behavioral symptoms that initially started out as again, aggressive sort of violent behavior, but was a pretty acute change. And so those studies were redone, and this time it was actually found that this was happening in the context of shunt malfunction, which was rapidly addressed, fortunately, very positively with a good outcome and improvement in the symptoms as well as managing her hydrocephalus. But I think this so clearly emphasizes how that similar spectrum of symptoms could be a result, both of this complicated set of developmental and psychosocial and educational things as well as a very neurological underlying cause that needed acute management. She's doing pretty great. And yeah, so just this we hope really clearly kind of helps emphasize the workup, some of what the management techniques are and how vigilant we have to be that these things can be very dynamic symptoms even as we're starting to feel more comfortable with how somebody is doing when they're feeling stable.

Dr. Heather Riordan (00:46:13):
So with that, we wanted to open up the floor to all of you because I'm sure that there are people in here who having experiences with us and have thoughts or questions to ask each other as a group, and also we're happy to help out where we can.
Speaker 4 (00:46:31):
Chris Geddes (00:46:47):
Hi everybody. I'm Chris Geddes. I am a fellow member of A-C-P-D-M with a background in education and federal government programs. I'm 57 with cerebral palsy. I would like to address, there are children that are being checked, but as an adult, nobody checked me as a child that I know of. And if they did, and I've had IEPs in school, so you know that. But as you age with cerebral palsy, other things happen. And I mean, I'm not afraid to tell you all I have. I go to a psychiatrist for that. I know many people with cerebral palsy that that we're dealing with brain injury and differences in brain chemistry. So 21 years of therapy is wonderful. I have PTSD from childhood difficulties and therapy that were inappropriate. So dealing with therapists has been difficult over the years. I would like to talk to you at some other time, but I do think that it is extremely important to be able to look at the pharmacology of adults because I can tell you nobody looks at my pharmacology except a nurse.

And I only have 10 minutes with a doctor, and if I'm sitting there needing to talk to her about a neurogenic knee or a sterny with corpectomy and needs for referrals, I don't have time to go over the fact that I've been on the TAL for 15 years and is it working? And my other doctors just want to, I had a psychiatrist a while ago, but he just wanted to over sedate me, and that certainly isn't going to work with a pain medication. So I think we need to, I heard somebody say, well, I don't have bandwidth for you. I'm this kind of doctor. Go to your CP doctor. And then my CP doctor says, well, I'm this. I've seen 50 providers since the last conference. If you add physical therapists, occupational therapists, speech therapists, neurosurgeons, gastroenterologists, urologists, let me just continue. I'm not talking about the pharmacist or radiologist that read my scans and I am now saying, well, I can't go see anyone anymore.

My husband and I are going to go bankrupt because we need to divorce for me to get Medicaid. I won't do that. All those things that I encourage research that allows people like me to not feel like they're shame in taking these medicines because I drive with hand controls and sometimes I don't want to be on a medication because I'm a responsible defensive driver who's never gotten a ticket, and I have two adult children and I'm going to be a grandma in January. And so we need help with how to frame, how we look at ourselves, because I know there's changes in my brain, but I'm scared to death of a neuropsychological exam because I am brilliant and I don't want to be stupefied. So please do something that we do not allow ification as a way of dealing with anxiety or trauma or cp. And the fact that my brain is different and those brain images, I can give you a million. It's criminal and it's malpractice to not have some of those on me. That's opinion because your children are going to be me and you're going to want to know how their brain changed because they're going to go through other things and their brain does change. So thank you. I hope I've helped the discourse. I do need to step out, but I would like to hear if you have any response. Agree. I agree. Bravo,

Dr. Heather Riordan (00:50:57):
Thank you so much for sharing that. I think it's heartfelt, honest, raw, and so important that we listen not only as a community, but get this message out to medical providers. I wish I could say that your experience was unique. I know it's not. We need to change that, but I really appreciate you being raw and open with us about this. If there's something we can do or if you want to connect later, we're more than happy to. I also want to say thank you. Congratulations on your future grandchild.

Dr. Aaron Hauptman (00:51:38):
One thing that we didn't, just to dovetail on your point, we didn't really talk very much about PTSD and trauma, which is something that we see in so many of our patients between the medical experiences that they've had surgeries sort of growing up, being in so many medical institutions. And this is separate from the fact that there's very good evidence that people who have really any childhood onset neurological condition are at increased risk for pretty much any of life's traumas. So it's something that we see so often in the folks who we work with.
Speaker 6 (00:52:16):
Can you address, just based on maybe your anecdotal, your experience in your clinics, your experience with intrathecal Baclofen and how you think that may or may not impact an overlay with these other medications that for bipolar disorder? You're nodding your head. So I've been in

Dr. Aaron Hauptman (00:52:41):
Particularly, that's a really hard question, but also one that we've seen not to infrequently. I do not know if there's much data for us to lean on in terms of recommendations. I can certainly say that I've seen patients for whom, well, I'm not sure about the bipolar element, but I've certainly seen a lot of complicated interactions in terms of spasticity and anxiety and insomnia in particular. And especially once you get into things like people needing revisions or being, when there's uncertainty as to the efficacy of the pump for an individual in managing their spasticity or whether it might be impinging on a nerve or causing locally irritation or pain. I'm not sure if you can speak to that side, but it's a complicated relationship.

Dr. Heather Riordan (00:53:43):
No, it is a very complicated relationship, but I'm glad you brought it up. I think, again, to the best of my knowledge, I don't know of any data specifically addressing this. So much of what I'm going to say is theoretical or anecdotal. Just to be very clear, I think that from a theoretical standpoint, the advantage of intrathecal baclofen in a theoretical realm is that the brain sees less baclofen than it would if you're taking it orally. That's why theoretically you couldn't have a higher, more potent effect without having as much of the sedation as you would on an equivalent effect of Baclofen. So from that standpoint, from a theoretical place, it should have less interactions with seizures and mood disorders. And because it's not going through the gut, there's less of an interaction with medications and so on and so forth. Now, in the real world, does that hold true?
I think we need studies to show that because I would say anecdotally, I haven't had people have in your daughter's specific position, but I will say I have had some people who felt like they felt more depressed on a higher dose of oral baclofen. I'd say that's the exception, not the rule, but we need to be paying attention to the exceptions as well because they matter. And I don't think we can say the rule stands for everybody, and so such and such doesn't happen, but I think we definitely need more data. I think it would be a great study to do.
Speaker 7 (00:55:15):
Follow up

Speaker 6 (00:55:17):
Question on your slide. Propranolol is also enderol, right? Is that the same drug and you had a plus or minus under the column of depression?

Dr. Aaron Hauptman (00:55:34):
So there were some older concerns about propanolol potentially increasing risk for depression. Subsequent studies have not borne that out. I think it's still thought of as a theoretical risk factor, but it's a very commonly prescribed medication. It's something that kind of goes as a little bit of a red flag because there historically has been some concern about that, but for the most part at this point is not something I've seen clinically very often. But I think it's just something that we flag for awareness.
Speaker 6 (00:56:02):
And do you think it has efficacy for anxiety

Dr. Aaron Hauptman (00:56:06):
For some people? Certainly. Okay. Yeah.

Speaker 6 (00:56:09):
Last question, and I'll give up the microphone. Can you address tardive dyskinesia in terms of how often you're seeing that as a result from some of these medications? Do

Dr. Aaron Hauptman (00:56:21):
You want to start? Yeah, sure. We were just discussing this the other day. So tardive dyskinesia, and I just want to make sure, is there feedback from having the two mics or are we good? We're good. Okay. Oh great. So tardive dyskinesia, which is sort of most commonly something that we see from long-term use of antipsychotic medications and is its own movement disorder that generally is reversible if it's caught quickly, but can require a lot of intervention. And if it's not caught or treated and people continue on, these medications for a long period of time can be an ongoing movement disorder. Even if the medication's withdrawn, there are certain antipsychotics which are considerably higher risk for causing tardive dyskinesia or contributing to it. And there are certain risk factors including having an underlying neurodevelopmental disability. So certain populations already having a movement disorder could potentially put a person at risk, and especially if somebody has, I would say it depends on what their motor manifestation of CP is, but it can be hard sometimes to recognize superimposed tardive dyskinesia if somebody already has a lot of dyskinesia and spasticity, because something that what we're supposed to do every time someone comes in is a very specific examination to check for signs or symptoms of tardive dyskinesia, which are very hard to do if somebody already has a movement disorder.
And you have to be pretty aware of what somebody's baseline is. So it's part of, I think, good practice from a psychiatric or neurological perspective to really document well before you start the medication. I think especially in folks who have more aggression, self-injury, more of these externalizing kind of symptoms, medicines like risperidone or aripiprazole can sometimes be used pretty early on. It's why we like to emphasize using therapeutic interventions first alpha agonists or other things second, and putting antipsychotics later on because it really is very complicated in general, but specifically for individuals with cerebral palsy,

Dr. Heather Riordan (00:58:49):
I think follow up on that, a couple things. From a movement disorder standpoint, I cannot emphasize the importance of knowing your child's baseline. I try and document, but I promise you that I'm not going to remember your child as well as you and other people may not be even paying attention. So if you're seeing something that's different for you, like new facial movements or things, it's important to note that and to trust yourself. I think the second thing to know with these medications, since we're talking about this overlap between neurology and psychiatry, is these like Abilify, risperidone, these anti dopamine drugs can sometimes actually be used to treat chorea and are one of the most effective treatments we have for that. So if you have somebody with chorea form cerebral palsy, you'll see us actually co-treat using that to either treat the chorea on its own or to co-treat mood or behavioral disorders as well as the chorea.

Similarly, there's another side effect called of dystonia or dystonic reactions that can rarely happen with these medications. And it's something that historically I have been nervous that made me nervous about using them in people who have had baseline dystonia. I don't know of any studies that have looked at this. So again, I'm putting on my anecdotal hat, so I want to be really clear about that. I would say I haven't personally seen them to worsen dystonia, my patients who have underlying dystonia, I think that's important. So at this point, I personally am not somebody who's, I'm not scared of using them if I feel like they need to be used to treat other symptoms in patients who have dystonia. But I always caution people to really pay attention that if they're noticing a change in that dystonia when they start these medications to let their doctors know, again, not wanting to worsen the movement symptoms by treating the psychiatric symptoms

Dr. Aaron Hauptman (01:00:37):
And the time course of those, the dystonia is generally something you would see almost immediately or very early on in using these medications. Whereas tardive dyskinesia is something that we really need to continue assessing for and rates and risk increases over time overuse. So that's something that you really need to continually be looking out for.

Dr. Heather Riordan (01:00:58):
The dystonia is usually easier to treat and stops when you stop the medication as compared to the tardive dyskinesia. So again, that's another reason I don't worry about it as much because we can address it. Can you point to literature for the support for a, A therapy for non-autistic persons with cerebral palsy? So my understanding, and I'm going to turn to you, is actually the initial data came out of people with intellectual disability, not specific for autism, although it's become more commonly used in autism. Now, getting insurance to pay for it if you don't have an autism diagnosis is where it's really challenging, but there are studies out there for that.

Dr. Aaron Hauptman (01:01:45):
Yeah, I would also just caution, I think sometimes, especially because schools have such limited options for treatment that's done within a school setting. Sometimes we hold up a BA as the thing that we're really looking for somebody to get, but it's not always clear that it's going to be beneficial. And it's a pretty intensive intervention. And so it can be, I've seen people get really struggle while getting a b, a if it's not an appropriate therapy for them. So it is a little bit of a double-edged sword. It's a wonderful thing if is an appropriate therapy, but we want to look at other options potentially that might be more nuanced. If somebody has other kinds of concerns or underlying issues.

Carol Shrader (01:02:32):
Let me say thank you. I think you really made Benjamin feel seen today, which is important to me, his mom. But I have a question about first please do more research. I mean if we need to volunteer, if we need to help recruit people, we need more information, we need more studies, we need to more second. My question really though is how do we bring this up with doctors? He has a fabulous doc who really listens to him and tries to treat everything about his cerebral palsy, but we really are in a cycle where his anxiety is causing reflux, which is causing him to vomit in public, which is causing anxiety, which is causing reflux, which is causing him to, and so we're in this horrible place and she keeps increasing his anxiety meds and then increasing his reflux meds and then trying to swallow all the meds is making him have reflux, which we're just in this horrible place that we can't find the right answers, we can't find the right experts, and it's causing him then to have a social anxiety of being out in public. As maybe you can see today that he wants to be here so badly, but this is really hard because of this horrible cycle he's in. Have you seen that? How do we start the conversation in treating it? Fix it please, is what I'm saying.

Dr. Aaron Hauptman (01:04:03):
Well first thank you so much for the question and for being here. I'm so glad that you came and are part of this. So I'm hearing sort of two questions in there. One is specifically in that circumstance, what could be considered and how do you talk with your provider who you really like and have had a good experience with? How do you talk with them about something not working and maybe wanting to try something different or see somebody is that I think I would hope that most of us would be pretty comfortable with folks getting second or third opinions. I'm always happy when patients or families ask me if they can see somebody else to get another set of eyes on a problem. I think especially if you've been working closely with somebody for a long time, it's easy for us to get myopic. It's easy for us to think that we've got a solution. So I think that just broaching the subject pretty openly like that. We've really had a wonderful experience. We want to keep working with you. We do feel like something's not working. Is there somebody who you might suggest could weigh in for an additional opinion or who you might suggest that we go to for a single consult for another set of ideas? Something like that. And I think most clinicians I would hope would respond pretty well to that. I don't know if that's your experience.

Dr. Heather Riordan (01:05:29):
No, I think first of all, I want to commend your doctor for actually thinking about the anxiety and the reflux because we are in a world where doctors are so short for time that a lot of people will go into the state of, I only see epilepsy. I only see this and not think about the global picture. I agree. I don't know any neurologist or physiatrist who's going to complain about a psychiatric evaluation or consults. I think that most people would be incredibly open to that if you feel like you're getting to the point where you need that and they'll be honest with you if they have other ideas that they want to try first, but it helps to, I don't think anybody would be offended by that.

Dr. Aaron Hauptman (01:06:09):
Finding a psychiatrist who works with folks who have CP or other neurological conditions can sometimes be a challenge. I think it's actually a little easier in not sure if this is exactly right. Let me see if this is right. It may be easier In adulthood, there is a whole field of a adult neuropsychiatry and there are dozens of training programs in adult neuropsychiatry, whereas there's not in pediatrics. So you can find providers who work in that intersection within adulthood. You may want to look, the American Neuropsychiatric Association is the national organization that boards those providers and they have a list of everyone in the country who is boarded in the field of behavioral neurology and neuropsychiatry. Whether their focus is on working with adults with neurodevelopmental disabilities versus focusing more on dementia and later progressive neurological diseases sort of depends on where you're at, what their practice is like. But that could be a good population of providers to look to.

Dr. Heather Riordan (01:07:20):
I would say also a lot of people have connections. If you have a neurologist or have any connections with any neurologist, I ask them if they have any suggestions because a lot of the conditions like Huntington's disease, Parkinson's disease and whatnot, that some of these neurodegenerative disorders in adults overlap in cognitive movement and mood as well. So those may also be opportunities. Somebody who's comfortable with those conditions should be comfortable with seeing somebody with cerebral palsy. It's not a perfect overlap, but there should be some.

Speaker 9 (01:07:54):
I just wanted to comment on that too. I'm one of the physiatrists here and there's not many pediatric physiatrists in the country and from that, I would never think that I'm the right doctor for everybody and I always appreciate when people question what I'm doing from both patients and families and saying, you know what? I just want to see what else is out there. So either something that I'm helping with or something that isn't in my number one comfort area because there is a similar training, but everyone's more comfortable and has more experience in different areas. So I think that you should always question everything. I think that's a good thing. No one should have an ego to say no mine's the only way

Dr. Heather Riordan (01:08:41):
To echo on that, I would say I usually appreciate when people question and bring up the conversation, it helps me understand where they're at, but also helps me to take the time to step back and think, is there something that we can do better? Would it be helpful to have somebody else engaged in the conversation?

Speaker 10 (01:08:59):
Thank you so much. I'm a developmental pediatrician, so I'm just going to weigh in on the A, b, A, but before I do so I never get an insulted when somebody wants a second opinion. I think that's that. If somebody's insulted, I dunno how to comment, but they're in the wrong business, let's just say, because we really don't know a whole lot in medicine and a lot it is more in art than a science. I know we're trying very much to be put guidelines out and evidence-based and all, but it really is an art about A BAI just was going to comment. I have yet to be able to get a BA on someone that the insurance will pay for that doesn't have a diagnosis of autism, and I just was going to second that. A BA may not be the right thing. That there are a lot of behavioral therapies out there that might be just as helpful. I'm a big fan of a BA, but it's very rigid in its mannerism of how people are treated and so it's not right for everybody.

Dr. Heather Riordan (01:10:13):

Speaker 10 (01:10:22):
Is that it?

Speaker 11 (01:10:26):
Hi. I just wondered if in any of your research, if you took an individual's diet into consideration how it impacts their mental wellbeing?

Speaker 12 (01:10:39):
Great question.

Dr. Heather Riordan (01:10:43):
I think right now there's a lot on the internet about the intersection between celiacs or gluten and sensitivity health and different dyes and things. There's also a lot of literature on the way that just general healthy diet affects our mood and behavior. I think those are two separate questions. I think there's a lot we don't know about these food sensitivities or die. Certainly always in that area of caution. As long as you're not limiting everything you're eating to just toast and you want to try to get something out of your diet and see if it feels better, that's fine. I mean, we probably would all feel better if we got artificial ingredients out of our diet, but I don't know that there's as much data. On the other hand, we do know that exercise getting out and being active, active in participating in the community, which is one of the things we really need to advocate, especially as people with cerebral palsy get to be adults and making a space for them and also having a good healthy diet, avoiding things that we know tend to worsen mood, like heavy alcohol use, things like that.
All of those things are important. I dunno if you have other thoughts.

Dr. Aaron Hauptman (01:11:52):
Yeah, I am not sure specifically for individuals with cerebral palsy. This certainly comes up generally in the autism community and people trying out different restrictive diets. There's not really much evidence for any of the particular diets that people try in terms of benefiting the underlying symptoms of autism. And the only exception I think of a diet that really does have good evidence is if specifically people have treatment refractive refractory epilepsy, there's good evidence for ketogenic diets in some populations. When it's done carefully, one does have to be a little careful with heavily restrictive diets because for somebody especially who has comorbid autism, if you already have some restrictions all, we already feel different from your peers not being able to be at a party and eat things that other people are eating. You already feel like even more separate from what's going on. And given that we don't have good evidence in favor of a lot of those interventions, it's something that I would just caution folks. It can be potentially helpful but also taken to a lot of extremes.

Dr. Heather Riordan (01:13:01):
I think from a similar standpoint, for people who may have difficulty getting all their calories by mouth or just because of dysphasia or swallowing problems, it's really important to be thoughtful about nutrition. What I have seen is some people get so restrictive on the diets that they're using to try and help with mood, behavior, autism, whatever it may be, that then they become nutritional concerns. So just be really thoughtful about those things.

Speaker 6 (01:13:31):
Thank you. Thank you for your talk. I'm actually an adult neurologist, but I have a 6-year-old with cerebral palsy and a lot of complex medical conditions. Do you have, I struggle with trying to figure out if he might have anxiety or depression because he has emotional, he has behavioral problems. Are there any scales or measurements to help assess a nonverbal child who has a lot of thoughts probably but can't express them, and also what type of provider would be the best to bring? We see a lot of specialists, again, we have a lot of people refers to other specialists. How would you suggest assessing for that?

Dr. Heather Riordan (01:14:16):
Well, first of all, I think you're asking the million dollar question, and there's actually a session later on that I'm going to be attending in the main conference that does talk about how do we assess these things. I think it's a conversation as Dr. Hotman and I have talked about a lot. There's a scale called the SDQ that has some evidence in cerebral palsy, but they didn't differentiate for those who are verbal and nonverbal. And I think that's where it becomes particularly hard, not only in children, but also adults who are nonverbal who haven't been taught language because they've been so focused on the physical side of things or who have dysarthria. So it's hard to understand. It can be a really big issue. I think that if you have, I don't know if your child's treated by a phys or neurologist, but if that individual is, I would talk start out by having the conversation with them. And if they're not getting there, I mean in an ideal world, you're going to be able to see somebody like Dr. Hotman or get neuropsychological testing, but even starting with the psychiatrist can sometimes be helpful. I'm sure Dr. Hotman has additional thoughts on this

Speaker 6 (01:15:25):
And also along that line, can you do a full neuropsych testing in a child who's nonverbal?

Dr. Aaron Hauptman (01:15:31):
Yeah, you can. Not necessarily full neuropsych, but there are modified neuropsychological evaluations. We're getting a little bit out of my wheelhouse, but the answer certainly is yes, assessments can be done and I'd be very curious what comes of that conversation later in the conference about specific questionnaires. I think we often look for other sort of more motor or autonomic or other kinds of signs or symptoms of distress, but sometimes it really is difficult for us to tease apart. But a lot of tracking or even using apps to sort of track causal relationships between potential stressors and signs or symptoms that you're noticing could be helpful. It's difficult with things like dysautonomia, which we might use in other contexts, but if you start to notice those patterns, that could be good information.

Jen Lyman - (01:16:26):
Do you have any more questions? Thank you all so much. This was an amazing conversation and presentation and I'm tremendously grateful and you've given me.