Chapters Transcript Video Changing Trajectories: Early Diagnosis and Intervention in Cerebral Palsy Jasime Ng, MD, discusses early diagnosis of Cerebral Palsy. Um, good afternoon, everyone. I'm really excited to be, um, giving you a talk on one of my favorite subjects. Um, I am a, um, cerebral palsy specialist. Um, this is what led me to, um, pursuing, uh, my training in pediatric rehab medicine. Um, I just love caring for kids with cerebral palsy. And my particular interest is in um tone management, um, doing procedures, but also in the um baby and young children population, um, specifically, um, with the early diagnosis detection work and um promoting early intervention in um young infants and children with CP. So, um, an overview of my talk today, I'm gonna go over some of the basics of what cerebral palsy is, um, and, um, a little bit about, um, how we classify cerebral palsy, um, and then really jumped into, um, how we actually diagnose cerebral palsy in infants, um, as early as 6 months, corrected age, accurately, um, some of the latest evidence and diagnostic tools available, um, to use, um, for that. And then we'll jump into um the latest evidence-based strategies for CP specific early intervention and how um really allowing that and facilitating that through early detection can ultimately change developmental trajectories for our children. Um, and then lastly, I'll end on what you can do as our community, um, pediatrician partners. And, um, I'm, I would, uh, I'll introduce some of the referral pathways and community resources and specific here to us at Benioff Children's Hospital, a newer multidisciplinary clinic, um, called Early Motor Evaluation Clinic. I started, um, last year. Um, really geared towards, um, promoting early diagnosis of CP and supporting caregivers for following early diagnosis. OK. Um, I'm gonna start out with some, um, case vignet. Um, this is a, a stock image, but, um, I took this, like some of the information from an actual NICU baby I saw, um, It's, uh, who was born early, uh, premature at 30 weeks gestation, um, via C-section, Egar's 55 and 9, early head ultrasound had showed grade 3, right greater than left intraventricular hemorrhage, and, um, the baby ultimately Spent about 8 weeks in the NICU, um, got some feeding therapy, and, um, met our NICU physical therapist here, um, and was referred, um, by his NICU team to Early Start Regional Center and the high-risk infant Follow-up clinic. After discharge, um, this is what he went through. I move this out, so I can see. Um, this is really, I, I took it from, um, his ongoing follow-up. So, he was discharged at term and um saw his pediatrician for his two-week follow-up. And ongoing. Um, he was seen by the neuro neurologist who typically, um, staff are in NICU at 3 months, 6 months, 9 months, and on, and then was also followed at the high-risk infant follow-up clinic. Um, he started his, he got enrolled at regional center and started out seeing an infant developmental specialist at 3 months, so pretty early, um, but didn't get to start PT until 6 months of age and then an OT at 8 months of age. And then his neurologist ultimately referred him to one of us in um physical medicine and rehab. And I got to see him when he was 12 months old, um, and then again at 15 months old. So this is um our classic kind of NICU graduate. Um, and he, he did have, um, ultimately motor delays that persisted. And um was diagnosed with um CP at 15 months um with subsequent referral to the California Children's Services. So that's our NICU baby, um, with some of the classic uh risk factors we see in the neonatal stage, um, that would put him at risk for developmental delays. Um, next, uh, We have 3 babies here who are not NICU babies, but are seen in um general clinic follow-up by the patricians. Um, Baby A is a 5 month old ex-term baby, um, who was born full term, uh, had no complications, but did have persistent head luck at 85 months, wasn't quite rolling yet, and some persistent, um, hand fisting at 5 months old. Baby Bee is a 9 month old ex-term girl, um, who started rolling over on time at around 4 months, um, maybe even slightly early from what parents recall, um, but instead of, um, setting up and crawling, Uh, she was army crawling at around 6 months old, and her, her pediatrician thought maybe she has some higher tone, a little bit of, um, more stiffness than you usually see at this age in her legs, but otherwise seemed to be doing well and healthy. Um, then we have baby C who uh is a 3 month old, um, former term boy, um, with some generalized lower tone, maybe borderline low tone, but no muscle stiffness or hyperreflexia. Um, still no height control at 3 months and has had some difficulty gaining weight. Um, so, these are children that, um, I envision we, we may see in clinic with some more subtle signs. It's easy to reassure them and easy to say, let's give it time, let's watch them. Um, but I would like to persuade you later on that these are babies you can actually intervene on early and refer early for early diagnosis. OK. Next one, we'll come back to those babies, um, but we'll move on to, um, talking a little bit more about what is cerebral palsy and some basics of CP. So, um, back in 2006, um, a group of international experts get together and the, uh, CPM Academy and came up with this consensus definition of cerebral palsy as a group of permanent disorders of development of movement and posture, causing activity limitations attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. Um, so some key, um, points, uh, with the cerebral palsy definition is that there's really no laboratory biomarkers in this mention in, in this consensus definition. Um, CP is a clinical diagnosis, right? Based on neurological signs and physical limitations encompassing a very wide heterogeneous group of motor conditions. So, no specific reference to um specific etiology, biomarkers, or imaging results. Um, it is primarily a motor diagnosis, right? Um, attributed to, again, a non-progressive insult, so not Um, not a progressive condition, um, that occurs when the brain is still developing and immature. Um, CP is the most common childhood motor disability in the US affecting about 1 out of 500, um, life births. Um, it's etiology again, can, it's non-specific. There's still no clearly established causal pathways that lead. Ultimately to CP. But we know, um, the insults can occur prenatally, um, in utero, perinatally during the process of birth, and then postnatally, um, really up to age 3 with, uh, um, meningitis at age 2 affecting the brain when it's still developing. The most common risk factor for cerebral palsy is prematurity. Um, so, the most, uh, the more premature and infantous, the higher the risk of cerebral palsy. Um, that said, I do, um, stress to, uh, to families that I see in the NICU that most, the, the vast majority of kids, preemies, um, do not end up with cerebral palsy, right? So then, how do you distinguish that becomes important. Um, and then in term infants, neonatal encephalopathy is the most common, um, predisposing risk factor for CP. Um, most, most individuals with CP have a normal life expectancy. So this is, um, for the most part, a lifelong condition, um, with no cure as of now. Um, that can result in early aging with subsequent secondary musculoskeletal complications that arise, but in itself, um, the CP condition itself is, uh, not life-threatening. And then, um, as we know, because this is a brain disorder, um, even though by definition it's a motor condition, um, there are other associated disorders just because of things that affect the brain, right? Um, so, uh, this is a, a picture that I took out from, um, Uh, a paper published from, uh, Dr. Novak. But, um, the key thing to stress here is that really 2 out of 3 persons with CP will walk, um, 3 out of 4 will talk, and 1 out of 2 have normal intelligence. Um, so I stressed to family, um, that I'm giving a new CP diagnosis of that. This really has, uh, by definition, inherently no implication for the child's cognitive status. Um, I have, I have two great friends with CP who, um, are doing really well in life. One's a lawyer, um, uh, a professor of law at Columbia, and that is often something that I think is an important stigma to decode, um, for families when we give a, a new diagnosis. Um, we classify CP, uh, through different means. So we can, CP can be classified based on the primary motor and movement pattern involved, the topography in terms of body distribution of the motor, um, abnormal motor movement, and then, um, their functional status. Um, so this is, uh, CP classification based on, uh, motor impairment. The vast majority of, uh, individuals with CP will end up with spastic cerebral palsy, which is that, um, form of like increased, uh, resistance to high, higher muscle tone, but specifically that velocity-dependent increase to Um, and resistance to stretch across joints. Um, and, um, they may require, uh, tone management, uh, that we see them for. Um, then there are also kids with dyskinetic CP, so dystonic CP when they have, um, brain injury, um, particularly to the basal ganglia. Um, choreoathhetotic, uh, CP patients when, um, they have a severe hyperbilirubinemia with conicterus and, um, the newborn stage. And then a toxic CP and hypotonic CP are less common, um, but we are seeing, um, more hypotonic CP, um, diagnosis attributed to genetic causes that are non-progressive. And then we also classify them based on their topographical distribution. So if the, and this applies mostly to spastic CP patients. Um, if their spasticity involves primarily one limb, that's monoporraic, um, one side of the body, hammiporatic, diporatic is involvement of the legs with relative sparing of the arms, and then quadruporatic or quadriplegic is um generalized spasticity. Um, so, examples of how we talk about, um, a patient, we may say this child has spastic diplegic cerebral palsy, um, related to prematurity and intraventricular hemorrhage. And then oftentimes when we have um uh an infant with HIE they most commonly um end up with a spastic quadriplegic cerebral palsy. OK. Um, and then, uh, as a, uh, cerebral palsy specialist, we also use functional classification, um, to describe how well our patients are doing in terms of how their cerebral palsy affects them functionally. And um there are 4 different functional classifications that the um AACPDM uses. Um, the most common one that is used by um CP providers is the GMFCS, the Gross Motor Functional Classification System, which goes from 1 to 5, um. And talks about, uh, basically classifies patients based on how well they mobilize. Um, and then we also have manual ability, the max, um, in terms of how well they use their hands, um, to perform their daily activities. Um, we have the CFCS to classify them based on how well they communicate, and then the EDA, um, in terms of their, the efficiency and safety of how well they eat and drink. Right. But then, um, that's an overview of CP, um, but how do we tell which high-risk infants have cerebral palsy, which of them will end up with CP? And, um, often we get asked, do we really need to know or diagnose now if we're referring them to early start anyway, and they're, we're, they're gonna be set up with early intervention? Does that really change management? Won't time tell? There's always that um concern of what if I'm wrong and I get the wrong diagnosis and the kit gets mislabeled, um, and kind of the fear and uncertainty of not knowing what to do after the diagnosis in terms of neuroprognostication and really providing um uh support, um, adequate support for caregivers. So again, back to our three cases of babies that we may see in clinic, um, who again are otherwise healthy, may have some feeding issues with baby C that you may be monitoring a little bit closely for. But, uh, motor wise may have maybe mild motor delays that you are watching a little bit more closely, um, but oftentimes we hold off from referring further, um, or because we, we, we just wanna adopt a watch and see approach. Um, but this is exactly where the problem lies. Um, now currently, you know, most kids with CP, um, are not diagnosed until, uh, 12 to 24 months in the United States. Um, And there are many reasons for this, right? Um, some of which I just talked about. Um, there's also the emerging nature of voluntary movements in infancy, so they're still young, um, and sometimes we see, uh, the delayed evolution of abnormal tone. Um, so the notion that CP was preceded by a neurologically silent period prevailed, and many clinicians historically adopt this. Wait and see approach until recently, um, right? Um, so, we have this current state, and what I'd like to, um, convince you is that we can now move towards the more ideal state of diagnosing CP early, as early as younger than 6 months, um, corrected age, um, with the use of diagnostic tools and international consensus, um, backed by Really great evidence that has really favored early detection. Um, and through this, we can also refer to very CP, uh, specific early intervention that in turn changes developmental outcomes by really, um, taking advantage of the brain's peak neuroplasticity window, which is younger than, um, 12 months corrected age. Other, um, reasons and cases for, to, in support of early CP diagnosis, um, one, we can actually diagnose CP accurately, so that concern that what if we mislabel this, um, has now been debunked, especially if we're using validated tools with, um, specialists who are familiar and, and trained in early CP diagnosis in infants. Um, CP can now be accurately diagnosed as early as 3 to 6 months corrected age. Um, the other reason that Um, I often, um, think it's often overlooked is that the vast majority of parents, um, with infants or children, young children with CP often suspected it way before they received the diagnosis. So, when you're concerned with those more subtle motor delays, the parents, um, have often picked up that as well, especially if it's not their first child. And, um, studies that look into that, this have actually, um, Uh, confirmed a lot of caregiver dissatisfaction with um delayed diagnosis that um is later linked to caregiver, um, depression. Um, earlier diagnosis also allows time for earlier closure for the families who are already suspecting the diagnosis and give them time for that diagnostic acceptance. It increases family confidence confidence in their care team. And again, allows for that early CP specific targeted intervention and early caregiver and familial support. So how do we diagnose CP early? Um, we now have a AACPDM care pathway. So, the early CP, um, detection and diagnosis is now, um, an actual gold standard and, um, standard of care for, uh, providers caring for CP in tertiary care centers. Um, and this push for early CP detection really started, uh, more than a decade ago. Um, Uh, especially following this landmark, um, study published in 2017 in JAMA Pediatrics by, um, Doctor Iona I Iona Novak and her team, um, that really outline outlines, um, the algorithm that we follow, um, to accurately diagnose um CP in infancy. I'll go over this in a little more detail later. Um, But coming back out to how we make a clinical diagnosis, um, like anything else, it always starts with, um, taking a comprehensive history, um, starting from the pregnancy course, um, their, their birth history, and then taking a developmental history, their family history, um, doing a thorough exam, um, And um how we diagnose CP specifically in infants, um rely on specific standardized neuromuscular assessment that we'll go over, including the general movement assessment, um, the Hammersmith infant neurological exam, and then, um, in chil in many infants, um, neuroimaging is used as well. OK. So, um, the article that was published and the now AACPDM care pathway, um, basically, um, separates out newborns and infants into two different, two separate populations, um, each of them going through two, early detection pathways. So, half of all infants with CP have high-risk indicators identifiable in the newborn period. Um, we call this individuals with newborn detectable risk for CP. This includes, um, prematurity, right? Um, any sort of, uh, neonatal seizures or encephalopathy, um, if they have atypical intrauterine growth, etc. These are often In the population that ends up in the NICU, right? Like our NICU babies who ends up being referred to um high-risk infant follow-ups. And so, um, this pathway occurs before 5 months corrected age. Um, for the other half of all infants with CP, um, the pregnancy and labor course may appear to be uneventful, and often they, they don't have any newborn risk. Factors, but they have um subsequent infant detectable risk that get picked up by their parents, caregivers, um, their community professionals, um, later. Uh, so perhaps uh they are not sitting by 99 months or have early hand asymmetry. Um, these are infants who have infant detectable risk, um, older than 5 months corrected age. And um we follow a different pathway for them. So, before 5 months corrected age, the most useful tool for early diagnosis of CPA are the GMA, the general movement assessment, um, the HI, Hammersmith Infant neurological exam, and brain MRI combined. And when we combine all these assessment tools, they have a combined sensitivity and specificity to diagnose CP as accurately as 90, almost 98% and 99% specificity. Um, After 5 months corrected age, the most predictive elements for CP diagnosis are the HI, DC, and brain MRI. So, GMA are no longer valid after 5 months corrected age. And um abnormal HI is, is about 90% predictive for CP at this age, especially and even higher when combined with abnormal brain MRI imaging. Uh, this is, uh, a picture of what the HEI exam looks like. Um, we can get, like, you know, I was trained in doing the HI, and a lot of our neonatologists and neurologists who care, developmental neurologists, um, who care for children with developmental delays, um, you can pursue further HI training and get HEI certified. Um, It, it's really a, a, a neurological exam standardized for infants. The scorable neurologic exam, um, Consisting of about 26 items that assess cranial nerves, tone, posture, movements, reflexes, and reactions. Um, and it's validated for infants between 2 months corrected age up to 2 years, so 24 months corrected age. And really, um, when you're well-trained and doing a hind, it can be performed in as little as 5 minutes, um, with really good inter radar reliability. And the HIN can provide both diagnostic and prognostic information in high-risk infants. Um, this is a, uh, the cutoff that I, I use often, um, for infants after we do a HI exam. So, uh, it's published back in, um, 2016 by, um, Doctor Romeo and his group, um, when doing Hein and more than 1500 infants discharged from the NICU at different points during the first two years of their life. So, um, through this large, um, HI data, Uh, they've reported cutoff scores for each age window from about 3 to 12 months, uh, 12 months that have really high prognostic value for later CP diagnosis. So, take, for example, a, um, a 4 month old, if their HI um score was less than 57, that's 96% sensitive, um, for a CP diagnosis later in life. Um, the other assessment tool that we use in infants younger than 5 months corrected age is the Practal's General Movement Assessment or GMA. Um, this is, uh, something that tends to require more advanced training. Um, it's a pretty expensive course, um, that occurs over 3.5 days to 4 days, um, administered by the General Movement Trust. Um, And this is a, a body of um specialists with an interest in early CPU detection. So, what general movement is, is they're really a part of uh spontaneous motor repertoire endogenously generated by um infants as early as the fetal life from the womb until about 5 months corrected age. Um. Doctor Prechel was the first um uh person to really standardize the GMA, and he observed back in the 1990s that the quality of this, um, spontaneously generated um infant movements were altered in preterm and term infants who had underlying brain injury. And described two distinct genera movement patterns, um, uh, in the writhing period from birth up until about eight weeks, um, post-term. And the fidgety movements that typically occur um as writhing period um goes away from about 9 weeks corrected age to about 5 months old, so 2020 weeks-ish corrected age. And Um, during the writing period, um, the most significant abnormal general movements to recognize is cramped synchronous. So if they have cramped synchronous patterns of movements, which are characterized by, uh, more synchronous contractions of all limbs, followed by a relaxation phase, that's highly predictive of the development of spastic cerebral palsy. And then, um, later on in life, in the fidgety period, um, the absence of normal fidgety movements, um, at about 3 months corrected age is most, um, predictive of cerebral palsy, and it's more than 90% specific, um, for the development, development of CP later in life. So that's the general movement assessment. Um, and then a little bit about neuroimaging, um, which we commonly order for infants with motor delays. Um, uh, the recommended, um, Modality of choice is an MRI of brain, um, without contrast under anesthesia for infants. Um, we actually find that, um, MRIs are most useful under the age of one. so, it's really nice to be able to get it before age one. Um, it gets a little bit tricky to interpret this MRI, um, findings after H1 due to the presence of artifacts, um, in the active myelination, um, stage, uh, between H1 and 2. so, typically, MRI brains are not as helpful. Um, Even if they're completely normal between ages 1 and 2, and um myself and the neurologist I work with typically recommend getting it either before age 1 or after um age 2. Some of the um findings that raises our concern for cerebral palsy or help support an early diagnosis of CP is uh cystic paraventricular leukomalacia or PVL um which is the most common MRI brain finding in the very premature infants um with interventricular hemorrhage. Um, basal ganglia involvement is, um, highly predictive for the, um, development of dystonic cerebral palsy later in life. Um, multifocal encephalomalacia, um, correlate highly with spastic quadriplegic, CP and strokes, um, correlate perinatal or prenatal strokes, um, correlate highly with hemiplegic cerebral palsy. And then, you have your congenital brain malformations like the lysencephaly and the um uh abnormal brain um neuronal migration um that often then warrant um further genetic testing. Um, the important thing to note though, is that 10 to 15% of individuals with CP have normal brain MRI findings. Um, so, While neuroimaging is helpful, um, uh, a normal brain MRI does not immediately exclude, um, CP. And similar to other assessment tools mentioned earlier, um, neuroimaging should not be used in isolation, um, to make or exclude a diagnosis of CP. Um, another assessment we use are genetic testing, um, in patients who have, uh, concerns for stroke, hypercoagulable workup, metabolic lapse, um, for infants who have, um, syndromic presentation, and neuromuscular workup when indicated. OK. Um, I included this um to talk a little bit of a newer designation, um what we call high risk for CP um designation. Um, along with this push for early detection comes, uh, some, some uncertainty, um, that is within range of susceptibility, right? Um, some, some kids, you know, based on their combined assessment, uh, using the GMA HI, abnormal brain MRI, we very much confidently can say, you know, you do. Meet criteria for um cerebral palsy as early as 5 months corrected age or younger. Um, but in some patients, it's not as straightforward. And um there is now this new designation called high risk for CP that is now recommended when a diagnosis is suspected, but there is um either a missing diagnostic component or a negative result. And Um, globally, clinicians who have shifted their, their practice, their practice toward early detection of CP had, have adopted this to provide um a framework for shared decision making and establishing a common language um between families and high-risk follow-up clinicians. Um, and importantly, um, parents do find that, um, receiving that high-risk CP diagnosis, while it's not, um, conclusive, is still helpful for them, um, to know that their child is, um, being ser uh monitored very closely and receiving the appropriate, um, diagnostic neuromuscular assessment. Um, this is a, um, study done by Dr. Bren that, um, is the first of its kind to really, um, look at parental perspective, um, when it comes to parents who have received early diagnosis and treatment for CP um in their infants and contrasting that with uh their provider priorities. And what they find is that, um, an overwhelming 100% of parents Um, stated very clearly that they prefer an early CP diagnosis or even a high risk, um, of CPE diagnosis. Um, parents want and, um, they're open discussion, very specific discussion tailored to their child. So they, um, they specifically say that they don't like generalizations, um, of CP and they want more tailored discussion to their child. Um, they want More discussion focused on their child's strength and not deficit, um, more clinicians' explanation of the task and assessment tool they're using to support their, their diagnosis. Um, and also more help with, um, their self-care and, um, support after receiving an early diagnosis and navigating, um, complex care systems with Regional Center in California and the California Children's Services and beyond. OK. Um, I'm gonna switch gears to talk more about early intervention specifically and what can be done following um early CP diagnosis. Um, a little bit of, um, some basic biology of the developing brain and why this is a, a critical window we can't afford to miss. Um, we, we are born with a lot more neuronal connections than we need, right? Um, so, uh, we know that, um, in newborns, um, Newborns are born with about 85 to 100 billion neurons, um, with about 2500 synapses each. And then by age 2 to 3, that has grown to 15,000 synapses, um, per neuron. Which is 50% more than the synapses in adults. Um, by, by age 10, they would have um went through this process called synaptic pruning, where excess synapses were eliminated by age 10. So, um, this is, um, this forms one of the bases. For, um, the concept of neuroplasticity, we talk so often about, which is the brain's ability to reorganize, um, by forming new neural connections and response to experience. Um, there are 3 types of plasticity shaped development, um, the pre and prenatal, um, and plasticity is often experience independent. And then in the early critical periods, before 12 months, corrected age, plasticity is very much experience expectant. And then throughout our life, our brain remains um pretty neuroplastic, um, and is highly experiencedependent, right? This is um Uh, slide I, I, um, took from another lecture we gave, um, more about neuroplasticity, but in terms of how, um, synaptic pruning usually works during development and how that process went wrong in a child with cerebral palsy, how it's, um, hypothesized to have gone wrong, right? Um, so, in cerebral palsy, that, um, synaptic pruning can actually be disrupted and maladaptive to, uh, normal development. Um, take a, um, uh, an infant with a unilateral stroke with hemiparretic CP, they may end up with learned disuse and, um, excessive pruning of its lateral projections of their cortical spinal tract, resulting in, um, maladaptive competing at that site. Um, so, even though we, we say, going back to that definition of CP being a, a non-progressive condition, the maladaptive pruning that follows, um, is, uh, it can be a progressive kind of active, um, ongoing process, especially in the 1st 3 years of life, and early intervention really exploits plasticity before that window closes. Um, so, uh, I, I listed out three examples of evidence-based CP-specific early intervention strategies. Um, one of them is this game approach or goals activity motor enrichment that's been shown to really improve motor outcome, talking about really using that repetition, um, very specific task-specific, activity-based, goal-oriented, um, motor practices in their natural environment, and that really forms the basis of why we have federally funded early intervention and from 0 to 3 years. Um, and what they've seen is that these infants consistently score higher motor scores with preserve voluntary movement. Um, The next point here is, uh, constraint-induced movement therapy. Um, and, in infants, uh, there's an actual trial called Baby CIIMT that, um, is this therapy approach where you actually constrain their, um, normal unaffected site in order to really stimulate the use of their more weak poratic sight. And that's been adapted to infants younger than 12 months and consistently shown to help improve he scores by 12 months, um, with the use of a constraint, um, restrictive cast on the good side. Um. Bi-manual therapy is a more recent, um, evidence-based, um, CPE specific treatment that involves intensive bimanual training of both hands and lower extremities, so without constraint and structured play, and again, been shown to be very helpful in infants with CP. Um, so, that's a little bit of a whirlwind. Um, I'm sorry for going through that so quickly, but, um, having gone through all of that, I wanna talk a little bit about what this means for us, um, what you can help with as, um, the, the 1st, 1st groundkeeper and gatekeeper for your kids. Um, so what you can do tomorrow is one, Don't wait and see, um, and to really use your developmental surveillance very intentionally. Um, we really want to emphasize the importance of referring early, um, and enabling you to know that you can refer early if there is any concern. Um, so, again, using our developmental surveys, this is one of the um criteria that I use to help um pediatricians um refer. If there is any asymmetry seen um in infants at any age, um, that is a reason to refer any early hand preference, younger than 12 months is a reason to refer. Um, and in infants older than 4 months old, if they have a persistent headlock, any hand fisting, um, You can refer um older than 6 months old with any stiffness in their legs. If they're not bearing weight um through their, their feet, that, that's a good reason to refer. And then, an infants older than 9 months old who are still not sitting independently, is um a reason to refer. Uh, one of the challenges that we often hear, uh, from pediatricians is not knowing where to refer to. And I think the most common, um, start point for many pediatricians is referring to neurology, which is the right way to go. Um, but, uh, a challenge with that is not with our many sub-specialization, um, sometimes there could be a long wait before, um, the child gets in. And then they may get in with a neurologist who don't really um do early CP diagnosis. They may get seen by a, you know, a headache specialist or an epileptologist. Um, so, one of the things that we've tried to um improve here at Benioff Children's is starting this early CP detection collaborative, um, with the rolling out of a new multidisciplinary clinic called the Early Motor Evaluation Clinic, or EMAC. Um, so, EMAC, um, started At the Banioff Children's Hospital, Oakland location, um, last year, I think May of last year, we launched our first clinic, um, and myself, um, take part in that clinic as the, uh, peace physiatrist in the clinic, and I work closely with two different, um, pediatric neurologists who both have an interest in early detection and, um, the baby population. Um, we have a PT who staffed that clinic who is, um, trained and performing the hine. Um, she is, um, about to get, um, her training and general movement assessment. So, for any infants younger than 5 months old, I'm the one who does uh their general movement assessment, video analysis. Um, we have a uh nurse who serves as the clinic coordinator and then a social worker who help um with the, um, patient wrap-up at the end and making sure that parents are connected with the right resources. Um, so, we hold this clinic once a month, uh, right now. Um, patients will start out, um, seeing a PT, um, to do their standardized neuromotor assessment, including the HI, the AIS, um, that they see, and then if they're under 5 months old, I tend to see them for the general movement assessment. And after that, we actually huddle um to talk about our findings and to go over their history, which we would have obtained through chart review and um pre-clinic um parental surveys, um. And then the neurologist and myself usually go in together in an arena-style joint visit to um further um refine our exams, uh, make sure that we ask any questions, um, clarify their history. And typically, right there and then, we, um, we deliver a diagnosis. Um, if, uh, if appropriate, either we diagnose the infant with um cerebral palsy, high risk for cerebral palsy, we may say that, you know, this is atypical motor development but not CP and um refer subsequently for other workup or other specialists or um provide reassurance and it's always nice when we get to do that, that the, the child is actually typically developing and doing really well and no longer needs to be seen back at our clinic. Um, uh, our goal is to really focus on delivering a clear diagnosis, um, with comprehensive multidisciplinary evaluation. And also really focus on giving um time for caregivers to process what this means, to explain what cerebral palsy is, um, and, and again, tailor that to that child. Um, we like to really go over um the child's strengths and the potential that we see and all about neuroplasticity and um early intervention strategies. Um. So, the way to refer to this clinic currently is you would send a referral um to Benioff Children's Hospital, Oakland um physical medicine and rehabilitation department, but in your reason for referral, specify early motor evaluation clinic or early motor evaluation for infants in the comment section. Um, this is the referral guideline that I had went over earlier. Um, we, uh, see any kids, um, from 2 to 24 months corrected age, mostly because the hind that the PT performs is validated for that age group. But really, we welcome any infants who have atypical motor development or muscle tone that you would like us, um, to further evaluate in a multidisciplinary fashion. So back to the three babies, um, Baby A, with a 5 month old ex-term boy, ended up um getting a hind score of 50, which is lower than the suboptimal score for that age group, and was noted on exam to have right more than left ankle plantar flexion and hip abductor dystonic posturing. Um, he ended up getting a brain MRI that returned normal and was diagnosed with high risk for CP at 5 months, um, reevaluated at 9 months, um, with a repeat high that improved to 56, and was then diagnosed with mild cerebral palsy. He ended up walking at age 2 with the use of, um, bilateral ankle braces. Um, baby B, um, ended up with a high score of 45 and, um, did have lower extremity spasticity and hyperreflexia on exam. So, despite her rolling over, she may, she may have rolled over using some of that abnormal tone and was army crawling more because she had difficulty isolating her, um, legs for reciprocal movements. Her MRI brain, um, did show some mild per. Ventricular leukomalacia and she was diagnosed with CP at 10 months old. Started on baclofen for tone management and ankle braces, fitted with a gait trainer, and she ended up pulling to stand at 10 months and walking with a gait trainer at 12 months and independently by a year and a half. Um, Baby C, um, got the general movement assessment done and was noted to have absent fidgety movements, which again, is very highly specific for cerebral palsy. Um, his hind score was 28 out of 78, and he got a brain MRI that was normal, um, was sent, uh, to genetics for further evaluation and diagnosed with hypotonic CP at 4 months and referred to, um, California Children's Services. Um, no, we're running short on time, but I also wanna just, uh, briefly put a plug for a new research study that we'll also be launching called the Circle CP study in August. Um, it's, uh, really geared towards caregivers called caregiver coaching, learning, and empowerment, uh, consisting of a six-week group therapy with 4 caregiver infant pairs, um, of infants who are diagnosed with CP, um, under, uh, age 2. It's gonna be led by um PTOT and PMNR and it's really meant um to be a boot camp for caregivers going over what CPS and early intervention strategies so that they're empowered to navigate um their child's ongoing long-term early intervention um through a regional center. If there's any interest in sending any kids for this study, you can reach out to myself via email. Really, this concept of um creating and establishing a medical home for CP care, um, that is the go to place for um families with children for CP, um, At Benioff Children's, we hope to launch this um with multiple specialists, um, as a program, supporting families as early as the time of early diagnosis to their early intervention, and then providing a home-based um team, including their neurologists, orthopedics, um, uh, specialists, their GI specialists, and on, and there are therapy specialists. My preferences. Thank you for your attention. Um, I've included my contact here, as well as the contact of, uh, Emacs clinic coordinator, Ruby Kovas. Created by Related Presenters Jasmine Ng ,MD Pediatric physical medicine and rehabilitation specialist View full profile
