Hi, sorry for the delay, but welcome to, we're talking about growing pains of spina bifida today, mainly, so we're going to be dealing with adults with spina bifida and how to help transition from pediatrics to adult. I have a great group of speakers today, unfortunately, one of them could not be here in person, so we had to pre-record her talk, but she'll be going first, and we'll get started as soon as we can. Thank you. Hello and greetings. I'm Jensen A. Clark, I'm from the University of Cincinnati, and I'm the medical director of our transition clinic. Today I'm going to give a brief introduction about growing pains with spina bifida, talking about transition from pediatric to adult providers. As a quick agenda, we're going to start by talking about what it means to transition from pediatric to adult care, and I'm going to specifically talk about two topics in aging with spina bifida, one being the skin and the second one being effects on mobility. As a quick overview in terms of defining spina bifida, it can be broken into two large categories, the largest category being neural tube defects, and then broken again into caudal regression or sacroigenesis, and then in the terms of specific spina bifida, there's spina bifida occulta versus an open spina bifida lesion. With spina bifida occulta, there's often no neurological signs or symptoms, and there can be findings such as a lipomyelomeningocele or tethered core. With open lesions, we're talking about either just the meninges or the cerebrospinal fluid being seen in to the outpouching area or the CSF in addition to the nerves, and those two conditions are meningocele versus a myelomeningocele. In terms of why this topic is important, we know that there are more than 170,000 Americans have spina bifida, and most of those are adults. It's the most common permanently disabling birth defects impacting seven out of 10,000 live births, and it's no longer something that's thought of just as a pediatric disability as a lot of patients reach the seventh or eighth decade of life. In terms of where patients can get care, you can see by this map, there's a lot of clustering in certain areas, but there are large swaths of the U.S. that are uncovered by National Spina Bifida Patient Registry sites, so the sites that you see are listed there. We do have one here in Cincinnati, but if you look over in the California region, there's only one in L.A. So why is it important? One is that there are a lot of comorbid medical conditions that are best addressed in a team-based care, and we'll talk momentarily about why that's important, but there's a lot of moving parts and components that are present when we're talking about caring for adults with spina bifida. Mobility and gait, which we'll talk a little bit about, neurogenic bowel and bladder, my colleagues will discuss sexual dysfunction as well as self-management, and all of these things are best addressed in a team-based care, a team-based care model. In fact, Mukherjee and her colleagues looked at places that they previously had a pediatric multidisciplinary clinic. When those clinics disbanded, it was noted that there was an increased occurrence of preventable conditions for those patients. They often lacked follow-up and missed treatments, and patients with spina bifida have significantly more hospitalizations per year than the general population, and this was most among patients who are 18 and 39, and again, that's that early transition age, with 34% of hospitalizations were due to potentially preventable secondary complications, so it's really important that adults with spina bifida maintain continuity of care, as well as the multidisciplinary approach, which we're going to talk about. One study also reported that these are the top four diagnoses that were associated with a higher likelihood of readmission for patients, septicemia, chronic ulcerative skin, skin subcutaneous infection, as well as infective arthritis, so this, again, highlights the importance of skin and chronic skin management for adults with spina bifida. This slide, although the font here may be a bit small, highlights some of the health factors that affect adults with spina bifida, and in my presentation, I'm going to talk briefly about skin breakdown, as well as mobility and movement. First, let's define transition. So healthcare transition is defined as a process of purposeful, planned movements of adolescents and young adults with chronic physical and medical conditions from the child-centered approach to adult-oriented healthcare system. It's important to note that, in theory, this should be a purposeful, planned movement, but as many of you probably know and experience, oftentimes, this is not as planned as we would like it to be, and so hopefully, throughout this presentation, you'll gain some insights about how you specifically, as a PM&R physician or as a provider, can help to help with this planning process. There's going to be two large components of transition that we're going to briefly discuss, one of them being the emotional component, the second being the skills and the practical component that's required for a successful transition. When we talk about transition, we have to be mindful that, because patients are born with this condition, they often have a lot of emotional ties to their providers and to the healthcare system that has brought them this far. When we help those with spina bifida transition to the adult care, we often see the range of emotions that they can experience as they go through this process themselves, one being hope for the future, another maybe being concerned about living more independently as adults and what that looks like. It could also include worries about how their medical care might change, and hopefully, it includes determination about how successfully they're going to take this big step in the next part of their lives. In regards to some of the more practical and skill-based things, we have to be mindful that as adolescents approach adulthood, they should be assuming more greater autonomy. They need to gain skills that require management of their own health and their own healthcare independently. This can include taking their medications reliably, making and keeping appointments, and communicating effectively with the healthcare provider, being mindful that in the pediatric setting, a lot of these skills are left up to the parents, but as they transition to the adult healthcare setting, they need to take more ownership of these opportunities. This set of skills and skill management are called transition readiness, and there is something called the transition readiness assessment questionnaire, which can evaluate where patients are on the spectrum for accumulating these skills. This basic track or the transition readiness assessment questionnaire can be used for any chronic medical condition, and there is also a specific spina bifida one that targets key areas. The font here, again, is a little bit small. It's more so for you to be aware of this questionnaire and be able to use it as an opportunity to get more information from your patients when they present to clinic, but it asks big categories about managing medications, keeping your appointments, tracking your health issues, talking with providers, as well as managing your daily activities. More specifically to spina bifida, it highlights things about knowing information about your shunt, bowel management, bladder management, which will be discussed later on in our presentation, but also skin and equipment, which I will discuss today. That leads you to figure out, as a physiatrist, how can I help? What is my role in helping these patients transition, and what can I do to help make that process more successful? Well, one, you can assist by promoting and maximize the young adult's ability to perform self-care, so asking about, are there barriers to them being able to do their self-care? Is it about positioning? Is it about experience? And thinking of ways that therapy can be utilized to help increase independence with those activities. Also asking about, what are they doing outside of doctor visits? Are they at school or work? Do they need skills, transportation, or equipment to help them engage more in the activity and find more meaningful community integration activities? What about things that interest them? What do they like to do? Are there adaptive sports that they want to get more involved in? Are there community or social circles that they previously were involved in or would like to become more a part of that we can help to decrease those barriers? And of course, promoting self-advocacy at every opportunity is really important. A few more statistics about aging with spina bifida. Like I mentioned before, spina bifida occurs in about 2 to 3.8 per 10,000 live births, and 75% of people with spina bifida live into adulthood. So again, we have a population that is aging in terms of coming from a pediatric to an adult medical condition. And half of those people, again, living with spina bifida in the United States are adults. More specifically, let's talk a little bit about skin. So chronic skin ulcers are the primary diagnosis in about 6% of adults with spina bifida. Acute hospitalization is a large part of their disease presentation. And so they often can get skin infections as well as skin diseases, and those are higher reported in adults compared to youth. The foot and ankle is the most common location of wounds, as well as followed by the buttocks and the knee and thigh. Patients who have a lumbar or sacral level lesion more commonly have foot and ankle wounds, whereas patients with thoracic levels are more likely and prone to have wounds on the buttocks. It's important, again, for us to know what level of lesions patients have, and then in what area of their skin they have higher rates or at higher risk of breakdown, for example, the foot and ankle, as well as the buttocks, knees, and thighs. We want to make sure we're doing preventive things, so making sure they have good proper fitting equipment, checking for braces, make sure they don't have any redness or irritation. But more importantly, again, talking about that autonomy, helping patients learn to check their skin and take a little bit more ownership of that portion of their medical care. So the Spina Bifida Association has come out with these brochures, and these are great starting points and talking points, again, for adolescents and adults with Spina Bifida to help them learn to check their skin and also give them a tool to be able to communicate with their providers about what their skin is looking like. So it's called the Did You Look?, and it, again, reemphasizes that the skin health starts with you. So putting the onus onto the patient to be able to start developing some of these skills. Now again, this font is very small, it's not meant for you to read everything on the slide, but it's for you to think about ways that we're advocating for our patients to become their best self-advocate. So it talks about keeping your skin dry after showering and bathing, turning yourself or asking others to turn you, so again, taking that ownership of their care, thinking about wearing sunscreen. It also talks about maintaining a healthy weight, which I know some of my colleagues later on will talk about. They talk about four areas to be sure to be looking out for and things to make sure to manage, and that's pressure, moisture, heat, and friction. And so thinking about if patients are less mobile, which we'll talk about in a few minutes, are they spending more time in their wheelchair, in their seat, and then does that promote moisture as well? Do they have pressure spots? And then with their transfers, are they requiring more friction or having more friction with that? So those are all opportunities to check your skin. When we think about changes in mobility, these quotes were taken from a group in the UK who asked patients, adult patients with spina bifida, about how they felt about changes in their mobility, and I think some of them are really impactful to get a firsthand account of how they are feeling the changes in their body. So one of them says, I was stable for most of my life. I had no concept that things would change or worsen. Also thinking about, I felt too young to be walking with AIDS. My spina bifida got a hold of me, bringing nerve damage, falls, incontinence of bladder and bowel. I can't accept seeing myself walking with AIDS. So this AIDS, this patient is talking about changing mobility and going from not using assistive devices to starting to use those assistive devices. When we look at when this often can happen for patients, if you ask patients firsthand, again, the font is very small, but looking at this 25 to about 41 to 45 year old range is where most patients didn't notice that they were having changes in their mobility. And it's important to note that this deterioration in mobility often happens between ages 25 and 40. And as with other conditions of childhood onset disability, it's important to know that these mobility changes happen younger than the general population. So when you have a 25 or 30 year old patient that presents in your clinic with spina bifida, being on the lookout and being hyper vigilant about mobility and ways that it could be changing is most important. We really want to make sure that we're monitoring early, sending for therapies or interventions that might help promote continued, not only fiscal activity, as well as mobility and making sure that we're promoting independence and quality of life. It's important also for us to think about what type of ambulator our patient is at baseline or when they're presenting to us what type of ambulation they currently have. So community ambulators walks indoors and outdoors for most activities and they may need crutches or braces or even both. And they use a wheelchair really for long trips out in the community versus a household ambulator walks only indoors with an apparatus able to get in and out of the bed and chair with little to no assistance. And they may use the wheelchair for some indoor activities at home and school. And then of course, for all of their activities in the community, a therapeutic ambulator walks only for a therapy session in school or in a hospital. Otherwise they use a wheelchair to get from place to place safely. And then a non-ambulator uses a wheelchair exclusively for transportation, but can only transfer, but usually can transfer from the chair to a bed. Again, I think it's important for us to think about what the ambulatory status is of a patient to make sure that we're maintaining that as well as promoting integration of community activities as well as ADLs within that ambulation category. With that being said, there were some studies that compared ambulation status with orthopedic surgeries. And so it looked at if they did surgery distal to the knee versus proximal to the knee, how that changed a patient's ambulation status long-term. So we noted that there was increased ambulation ability for those who had surgeries distal to the knee, including the tibia, ankle, and foot, but there was decreased ambulation ability was associated with surgeries proximal to the knee. And then of course we had increased transferability was associated with ankle and foot surgery. It's important to note that we're not saying one causes the other, but again, we're thinking about functional levels of patients and how we can maintain that. And these surgeries were often performed to preserve that function or decrease or stop a decline in function. And so it may be more of a proxy measure of the severity of the individual's condition or the motor level. And so it's important to be mindful that when you're meeting patients for the first time and you're taking that surgical history, understanding if they had a lot of surgeries that were proximal to the knee, thinking about tethered coral release, spine or scoliosis, as well as hip surgeries, then they may have a decreased ambulation in the future. So what are the benefits of mobility? I'm sure everyone in this room could go on and on about why mobility is so great, but these are some of the known benefits. We have to think about contracture management, making sure we're decreasing contractures or the opportunity for that. Exercise and cardio respiratory effects are really important in benefits of mobility, as well as strength and endurance. Thinking about getting out into the community, having that community engagement, being able to do that when patients are more mobile, they're able to do that. Bone density is improved. My colleagues will again talk about bowel and bladder. We're also thinking about the ability to perform self-care activities. Those who have more mobility are able to do that more independently. And then of course, thinking again, going back to skin where we're able to reduce the pressure and also redistribute our weight, improve underlying pain, and reduce stress. When we're thinking about equipment, there's some particular things that we can be mindful of as physiatrists. At the PM&R visits, we can ask about what the age and the function of the equipment is. So for example, is it more or less than five years old? Do they actually use it? Is it in need of repairs? But then also planting that seed for self-management, asking patients to start to take track and be accountable for who their vendors are. This information is often previously given by parents, but now that we're advocating for patients to take a little bit more ownership of their self-management, we often can ask them, well, who's your vendor? And if they don't know, help them come up with strategies to keep it all in one place, either in a cell phone or in a written record. Also think about how they may have changes in their home environment. So some patients have been living at home for most of their life, and now as adults, they're ready to move to more independent living, or if that means living in a facility or other type of supported living environment, thinking about what does the equipment look like differently for them when they're there. Sometimes patients' families are used to doing their transfers, but if they're going to be moving to a facility or an apartment of their own, they may need new equipment like a horrier lift or transfer boards if staff is going to be helping to transfer them. Also think about pain. Some of those previous comments about patients changing mobility did talk a lot about how pain limited or helped them move into a assistive device used a little bit earlier. So you want to ask about, do they have pain with their mobility? Do they have pain with the current assistive devices that they're using, sitting in their chair, using their forearm crutches? And so you want to start thinking about, are these opportunities where we should start using more power mobility going into the community, or if we should utilize different types of access points to help our patients maintain their physical activity? The last resource I want to just point you to is the Spine and Bifid Association has a great PDF that's broken into several care categories for the guidelines for the care of people with spina bifida, and it's an awesome way for you to just quickly hit certain topics like skin or mobility or pain, but also have them in an organized manner. Here are my references, and at the end, we'll be available for more questions. Okay. Good afternoon, everyone. My name is Danielle Powell. I'm an associate professor at the University of Alabama at Birmingham, and I'm also the medical director for our adult multidisciplinary spina bifida clinic. And today I'm going to talk about a few topics that, you know, it may be difficult for some of us to discuss with patients, but are definitely topics that need to be discussed with our adults with spina bifida, because they have no disclosures. So we'll talk about mental health, sexual health, and then, lastly, I will touch on employment barriers. So mental health. So mental health is a topic that we need to do a better job at discussing with adults with spina bifida. And as you see, there are several. I have listed challenges that adults with spina bifida face, and I'm going to go over all of these in a little more detail. So when it comes to anxiety and depression, adults with spina bifida actually have a higher prevalence of depression and anxiety. And we also see that in children as well with spina bifida. And some of the factors, if you think about, you know, throughout their pediatric time, may have had several hospital visits. There may be a fear of the unknown. So for adults, as you saw earlier with Dr. Clark's presentation, spina bifida is a spectrum. So you have individuals who are ambulatory, individuals that are in wheelchairs, and then some that, you know, were doing fine, and then when they reach adolescence, may have developed tethered cords. So now there may be a change in their function. And it's always that fear of what's going to happen next. I have patients that come in year after year, you know, wondering, will my cord tether even more? Will I have to have another surgery? Or they're dealing with issues as far as pain related to their condition, and they're trying to figure out how to deal with all of this. The thing with anxiety and depression that is very important for adults with spina bifida is that with depression, it can be so disabling that it allows you not to do the things you need to do for yourself. So for us in this room, if we choose not to get up and take care of ourselves, we may be okay, right? But think about if you have spina bifida and you're not transferring like you need to. You can develop a pressure sore. If you get a pressure sore, that may take a year out of your life trying to get that pressure sore to heal. So this is definitely a topic that we need to make sure we're discussing and that we are monitoring and getting our patients the help that they need. Next social isolation and loneliness. So this is something that when you reach into adulthood, your life changes. You may no longer be in school where you have friends that you're able to see every day. If you're now at home with mom and dad, or say mom and dad are working, but I'm in the home by myself every day, and you may not be working or have things that you look forward to, it can lead to that feeling of loneliness. And then also, one of the things I want to touch on is that just the difficulty with forming relationships. So there was a study that looked at relationship building in adults with spina bifida and actually showed that some of the relationships that they form, they feel like those relationships may be a little bit deeper than what the individual that has friendship with them. So it can lead to them not being able to trust individuals or also being taken advantage of. I actually, and this is a very sad case, but I actually had a patient who was paying individuals to spend time with her. And so me and her had to have a long talk about that, but that's because she felt like she had no one else and she was just trying to buy friendships. So body image and self-esteem. So there are some physical differences that you can see with some individuals with spina bifida. And as we know, there's a lack of representation. I love the plenary that we had earlier and how he was able to bring amputees to an Apple TV show. But when you think about representation for adults with spina bifida, it's not there. So for them, sometimes it's a lack of self-esteem and being able to feel like they are, like it's normal or to normalize it. So really being able to provide interventions to help them have self-acceptance and to be okay if I have scoliosis or I have a curve, or to be okay if I walk and my gait may be different than others. So really giving them resources to be able to have that confidence that they need. So next adjustment to independence and life transition. So Dr. Clark did an excellent talk. So there is a transition to adult care, from pediatric care to adult care, but think about just the transition of becoming an adult. Think about when you were 18, 19, you know, 21 and going into adulthood and you're facing so many things. Not thinking about healthcare, but just what am I going to do when I grow up? Do I want to get married? You know, what do I want to do as far as employment? So they're facing all those things, but put on top of that an illness where you're not sure what opportunities you have for yourself. So one of the things that we have to do is really try to make sure that we educate our patients, give them resources so that as they're adjusting into adulthood, we can normalize the way that they feel and give them counseling and resources just to help them as they transition. And then cognitive and executive functioning. So I'm a big proponent of neuropsychological testing for adults with spina bifida because there may be some executive function issues that may not be realized. So I had, I think of a patient in particular where he was working at public, went to school at the University of Alabama, but ended up flunking out because he wasn't going to class and mom was like, he's just lazy. You know, and I'm just like, no, I think it's a little bit more than that. So I try, I had to educate her on the fact that let's do a neuropsychological test just to see what's going on. A lot of it had to do with just his executive functioning and being able to keep track of things. And it wasn't that he was lazy. It was the fact that there were some things that he had to deal with as far as trying to compensate for his cognitive issues that then allowed him to grow on and be successful with school and also employment. So really trying to, once you have the testing, being able to then have those cognitive therapies and strategies to help them be able to do the things that they need to do. And then self-advocacy and navigating the system. So there's a lot of barriers we know for ourselves when it comes to healthcare, but being able to help our spina bifida patients be able to navigate the healthcare system and be able to build those tools to self-advocate for themselves. So when I say self-advocate, the previous slide I just showed you is that there are some patients who may have some executive function issues. So then it's that education for families to also know that, yes, we want patients to self-advocate, but some people may need some assistance in that and that's okay, but we have to make sure there's a network of individuals that are helping them be able to advocate for themselves if they don't have the ability on their own to do that. And then also having those community resources. So support groups, peer mentors to be able to help, be able to help with that isolation and then also navigating the healthcare system. So some of the key takeaways for when it comes to mental health is one, routine screening. So within our clinic, we do the PHQ-9 on every single patient so that we're able to see kind of where they are when it comes to depression, but then also being able to give patients resources. I'm also a big proponent of rehab psychology. So I'm lucky where I have two rehab psychologists within my practice where they have additional training where they understand a little bit more about individuals with disabilities and being able to help them with their psychological needs. Also the peer and community engagement and then also empowering our patients with independence. So next we're going to move over and talk about sexuality and family planning. So some common misconceptions that people may have when it comes to sexuality in adults with spina bifida. So one is that they are not interested in sex. Fifty percent of adults with spina bifida are having sex and more than that are thinking about it or they want to have it. So this is something that we have to make sure that we talk to our patients about. Secondly, they are unable to have sexual relationships. That is untrue. They can. They are not sexually normal. That is not true. So there may be a few differences, but they are able, they have equipment and it works. So we have to know that about our patients. Incontinence and bowel-bladder issues make sexual activity unpleasant or impossible. There are things that you can do as far as making sure that patients have their bowel and bladder program prior, but then too there was a study that looked at if there was like an accident during sex, was that, did that make someone not want to have sex and that is so untrue that their partners understand that and they're fine with that. They aren't interested in having families or becoming parents. That is also a misconception. They don't need sexual education. So that is one of the big areas that we need to talk about and I'm a big proponent of when you have these conversations and it needs to start in pediatric care, making the parents or caregiver leave the room so that they can be honest. There were some studies and actually a researcher at UAB looked at this where one of her surveys they said if they would have just told my parents to leave, I would have felt open enough to share with them what was going on. I also was able to hear an adult with spina bifida talk about how he found out about sex and he said, I was in middle school and my friends were talking about it, but my providers never mentioned sex at all to me. So you're learning it from middle school kids instead of providers that can really educate. So when we don't educate our patients, what does that lead to? Unplanned pregnancies, it leads to sexually transmitted diseases. So we have to make sure that we're educating our adults with spina, well pediatric and adults with spina bifida. They can't be in romantic relationships with able-bodied patients. That is so untrue. I have so many of my patients who are married to people that do not have spina bifida. So then some of the common challenges that we see when it comes to sexual health. So there are some physical limitations. So there may be some reduced sensation, neurogenic bowel or bladder issues, pelvic floor issues in adults. Also uterine prolapse are some of the issues that we may see. Also body image. So as I stated before, trying to normalize this is important because some patients, because they feel different about their body or they have low self-esteem, they say, well maybe I shouldn't even think about these things that I have an interest in because nobody's bringing it up. So they're making me feel like maybe I shouldn't be thinking about sex or trying to have sex. And then lack of resources. So lack of sexual education by providers, but then also, you know, really talking with parents about how to open up these conversations with their children. Well, it's just like I said, it's just starting to pediatric, but to talk to them about sex. And then communication challenges. So, you know, healthcare providers, a lot of times, you know, with our visits, there's so many topics that you have to discuss, but then having enough time to really talk about something like this. So it may be that either you set an appointment aside to do it, or if you have someone else within your clinic that can really just delve into this topic, I think is important. So then addressing sexual needs in clinical practice. So of course, open communication. So then as providers, we have to make sure we're educating ourselves. And then if we don't feel like we have the knowledge, really getting them referred to GYN, urology, to really be able to provide that knowledge. Also sex therapists. That's another individual that I think we should get involved in. And then occupational therapists that can really help with positioning and different things that patients may need in order to be able to have sex where it's comfortable. And then again, body image counseling. So then this is a website that was formed by two providers at the University of Michigan that if you have not seen, I would recommend that you take a picture of it and look at this website. It has videos and resources for adolescents to really talk to them about sex. And actually, Courtney Stryer, she came to UAB last week. We just had a conference and did a phenomenal talk where she talked about everything from orgasms to just every topic you can think of with sex that, you know, we don't discuss with patients. So really, if you get an opportunity, take a look at this site, and then please pass it on to your patients. So then common facts. So a lot of questions that patients may ask you when it comes to family planning. So the first one is, can I have children? I remember I had an adult with spina bifida who came into my office and she had gotten married. I was like, congratulations. So then I started to have to talk about, you know, folic acid and family planning. And she just looked at me, she was like, I can't have kids. And I said, yes, you can have kids. And she cried in my office because she was like, I thought I could never have kids. So yes, adults with spina bifida can have kids. Now, that does take going and seeing a gynecologist and seeing if there may be some fertility issues, but most can have kids. Well, my child, the other question is, is my child at risk of having spina bifida? So there are some increased risks, but one of the things that we always counsel, and for medical students in the room, always remember that four milligrams of folic acid, that is a common question that you may see, and even for our residents on like board exams, but four milligrams is recommended for an adult who has spina bifida to take. And you should take it at least a month before preconception. So for all of my adults that are having sex, I always recommend just go ahead and start folic acid. Because as we know, that neural tube closes so early that by the time it closes, you're already, you may not even know that you're pregnant. So I need a C-section or can I have a vaginal birth? So I leave that question or the answer to my OB-GYN physicians as well as neurosurgery. So it takes a team of people just depending on that individual's needs as far as their anatomy, mobility, other medical considerations as far as what type of birth they'll have. And then lastly, can I breastfeed if I have limited mobility and cessation? And that answer is yes. So getting your lactation consultant as well as occupational therapy involved to really help them as far as positioning and all of that. So then health risk during pregnancy. So some patients will have kidney issues, shunt surgeries that may have some increased risk during pregnancy. So we have regular monitoring. It also, I am a big proponent of high-risk obstetrics as well as maternal fetal medicine. They should be involved. So one of the key areas for PM&R that we focus in on is the changes that may occur with mobility and physical strain. So really trying to make sure that you're evaluating that patient throughout their pregnancy if they're having more issues as far as ambulation, if they need to go to physical therapy because they're having increased back pain. So really being able to help that individual throughout their pregnancy with any mobility or pain issues that may occur. And then there is an increased risk of preterm labor as well. So then adaptive parenting. So this is something else that we can also educate our patients on is that there are adaptive cribs and changing tables that they can use. And then as far as parenting, education, and support, really trying to get them into support groups for other adults that have children and then also utilizing, again, occupational therapy to help with anything that they may need, especially while their child is young. And then this is just a picture I wanted to show you all of a wheelchair-accessible crib. As you can see, it's lower, and the door is where the mom can actually get to her child. So knowing that those things are available to parents. So next, we're going to talk about employment. So adults with spina bifida do have a lower rate of employment than the general population. The one thing that sticks out, though, is that most patients will have part-time jobs instead of full-time jobs, which is key. So when you think about a part-time job versus a full-time job, think about benefits. So a lot of patients will be on state insurance, and depending on where you live, they may not be able to have the same resources that they had before. I know within my state, our Medicaid does not give a lot of resources, so we have to be very creative. So I kind of feel like sometimes with patients, they're trying to figure out ways to kind of get ahead, but it's so hard to get ahead because if you're on Social Security Disability, you can only make so much money per month. And I actually had one patient where she made more than what she was supposed to, so now her checks have been cut every month because she made too much. So it's like she keeps telling me, I can't even get ahead. I'm trying to figure out how to pay my bills, but I can't get ahead. And right now, she can't work a full-time job. So some of the issues that may be associated with that are health needs, fatigue, mobility limitations, and then I touched on the lower income, fewer benefits. So then some of the common barriers to employment, so physical barriers, so inaccessible work places, lack of adaptive technology, limited options for remote work, and then also one that's not listed is just employers being able to understand just the differences that they may have with an individual with a disability and being able to take that into account. And then health-related barriers, having to, you know, leave work for appointments, if they have issues with pain or one of the big ones that we see too, and we're going to have a whole talk on neurogenic bowel, but that's one of the things that's been linked to decreased employment are individuals that have issues with their bowel program. So people will choose not to work if they feel like they're unable to manage their bowels appropriately. And then cognitive challenges, so executive function, so being able to make it to work on time, organization, so really being able to make sure that people are equipped with compensatory mechanisms to help them be able to manage those cognitive challenges that they may have. So then some of the strategies. So as you all know, you all in this room chose medicine for a reason. This is what you want to do with your life. Adults with spina bifida want to have a job that they enjoy. So it's one thing to say, oh, we can find you a job, and it's something that you don't want to do, but I think it's really important for someone to find a position that they feel like they have a purpose. So I'm real big on job matching and trying to have a job that's customized to what they want to do. So that can be done through vocational rehab within your states as far as being able to help them with surveys on what they want to do and then matching their abilities to jobs that may be out there, and then skill development. So I always tell my patients that within our state, they will pay for you to go to school, or they will pay for you to get a trade. So really finding out what you want to do and then using those resources in order to be able to have a job that you like. So then workplace accommodations, where we can play a role, is really with providing that information to the employer. So writing letters to help our patients be able to have the accommodations they need at their job, and then on the job, coaching and mentorship. So being able to have someone in our state, vocational rehab will match you with someone that can help you as far as having a job coach that can be there at your employer. So some of the takeaways, I know I kind of ran through this, but it was three big topics. So for mental health, one of the things I want to stress is that assessment and then making sure that our patients are given the tools that they need. So making sure they have a counselor or a therapist. Sexuality and mental and intimacy, open communication, so bringing up these topics, trying to normalize it with our patients. Family planning, making sure your patients are aware they can have kids, and then equipping them with the knowledge they have to be able to start a family. And then employment, really making sure they have the resources and encouraging them to seek employment so that they can find a purpose in this world. So these are my references. And then this is it. Thank you. Hi, it's me again. So let's talk about neurogenic bowel and bladder, two huge topics. Here are my disclosures, nothing relevant. So when you look at a survey of parents of children with spina bifida as well as adults with spina bifida, the number one issue they have is finding doctors. But if you look at number two, you can see bowel incontinence. And then for adults, urinary incontinence as well is a huge issue for these patients. I'll present a case of a patient for you guys just to get some audience participation. This is a 42-year-old female with spina bifida status post-repair, hydrocephalus with VP shunt. Also has rectal prolapse. She presents with a desire to be more independent with her bowel management. She's on Colace twice daily with a fleet enema every other day. But due to her rectal prolapse, she's unable to self-administer, so she's been living at home and her mom helps her assist. However, she's very independent otherwise. She has a job. She wants to be able to go out and live on her own. But she continues to have these intermittent accidents, which cause a great distress and social isolation. I'm going to skip this. I think you guys all know the issues with neurogenic bowel. It's a lower motor neuron issue with spina bifida and leads to constipation, diarrhea. Also, it will affect the urinary ability, fistulas, fissures, depression. I think early on, the pediatric providers, I think this is when you begin to start the conversation, transitioning to adulthood and trying to get the patient to be more independent with her bowel and bladder management. Possibly, if they need to, maybe refer them to a surgeon for mace or colostomy, which we'll talk about later. As an adult, when I see them, if they haven't gone through this yet, we also want to continue to encourage independence, help them limit their accidents, and either use, I didn't put it up here, but maybe use transanal irrigation or a possible referral to a surgeon. The issue with aging in the bowels, as well as everything else, what worked as a child may not work as an adult. They might have undergone other surgeries, changes in activity, mobility. Then also, as you grow older, you develop other health issues, and you get put on meds, which can affect your bowels and bladder as well. I think the key thing is also to note hydration. A lot of these patients don't drink water because they're worried about their urinary, having accidents. Diet as well is huge. As an adult, they may be eating more takeout, they may not be eating as much fiber, and you have to help them. Sometimes you may want to have a diary, have them have a diary, and possibly consult with a dietician. Medication management, I know we all start with the Colace, usually the Senna and the Miralax. A key thing I got from this lecture is if you're using suppository, it's nice. You don't want to use a solid. You want to use a liquid suppository because a solid will just sort of fall out because they have low anal tone. And not to use phosphate enemas because not only do they irritate the lining, but especially with kidney disease, they can exacerbate that. These are things I think they use more commonly in children because I've never encountered this. And I think the reason is these cone and blue enemas, they have to be sort of lying on their stomach with their behind up in the air to administer these. So I really don't see these in adults. I think you need to have a parent, but they are there. So what are your other options for somebody with neurogenic bowel with spina bifida to get them more independent with their bowel and bladder management? I think transanal irrigation systems, colostomy, or monoenterograde continuous enema, which is a mace, colostomy or leostomy are good options. We'll first go through this. I know this is a wordy slide. However, I bought a model. This is a rectum, and this is one of your transanal irrigation systems. What you do is you can see the picture. You just sort of put this up. You irrigate it with a solution, and then you remove it, and you're trying to help the patient evacuate their lower bowels. So the issue with this system is it's very nice. You can help somebody become more content if they do this every other day, every couple of days. But we have this limitation by access to it because of insurance coverage. I think Medicare usually doesn't cover it. However, I've heard some Medicades are covering it. So please, if your patient's on Medicaid, please look into this as well. Colostomy is another option for these patients. I know the idea of having a colostomy can be disturbing for some of these patients. They're psyched. But at the same time, if you have a colostomy, you don't have to worry about having accidents. You don't have to spend, like, hours a day worrying about bowel management. And you do have a significant improvement in quality of life, increased independence, and reduced hospitalizations. The other option to consider would be a MACE procedure. And here, this is where you can see the tube. You can take your appendix and they actually make a... But, yeah, they can take your appendix and use this as a conduit to apply. But anyways, you can see on the picture, you can take the appendix and use it as a conduit, just attach it percutaneously to give enemas. And you can see, as you give it up here, that way you're attacking the issue from above, not from below, which can be more effective. If you're using the ileum instead of the appendix, this is called a Monty MACE procedure. If they've already had an appendectomy or they have mitophenol, they can try these other devices. This is called a chay, trapdoor, or mickey. Unfortunately, these have to be changed every year. All these have, you know, we administer fleet or tap water enemas. Some people will use some sort of mixture of Marilax. It's a lot of experimentation the patient has to do to figure out the right combination. The main complication of this is leakage. However, at the same time, you can imagine how using this will help them. They can do this every other day, every three days. You know, you can reduce the incidence of accidents like this. So our patient, she actually ended up choosing to undergo a MACE procedure. However, what she noticed is, you know, since then she's overall not feeling well. She doesn't have any fevers, dysuria. The MACE was successful. She's able to self-administer enemas. And at the age of 42, she moved out of her parents' house, bought herself a Philadelphia row home, and is living there now. She does see a urologist. We have a urologist who specializes in neurogenic bladder, and we like to send our patients to them. She had a kidney ultrasound that showed no abnormalities. She had urodynamics done five years ago, which showed detressor areflexia or a lower motor bladder, which is what we expected. And her cystoscopy capacity was 320. She was on oxybutynin 20 milligrams. She cast four to six times. Even at night, she sometimes wakes up with the urgency to cast, but sometimes these are dry. And she also has intermittent accidents without awareness. She ended up taking some antibiotics, and her symptoms did improve. I'm going to skip a lot of this, too, because I think all of you are aware of this. I also want to get to actually have some time. So when we go to adults, I think the main thing we want to do is support independence, continue to monitor their bowel, and bowel, bladder, and urinary tract kidneys so that you want to still get them a renal ultrasound every year. You want to check their annual serum creatinine through their primary care physician, as well as assess for risk of bladder stones, ruptures, tumors, which can happen with chronic catheterization. If they had a bladder surgery done, a bladder augmentation, you also want to check annual serum BMP and B12 monitoring and cystoscopy and imaging as needed. If they've had hematuria, recurrent UTIs, increased incontinence, pelvic pain, and if they've had a renal transplant or a BK polyomavirus. This lady had a urodynamic study done recently, and the urologist, of course, impressioned that her neurogenic, a reflexive bladder was stressing incontinence due to intrinsic sphincter deficiency. He made some recommendations. One is coaptite for stressing incontinence, which we'll go into a little later. He also mentioned considering botulinum toxin injections, but he did explain to her this would be leading to worsening incontinence. I am sort of confused by that recommendation as well for that, because these are low-motor neurons, not really spastic. Interestingly, I think with these patients, when do we say they have a UTI or not? When do we start on the antibiotics? Their symptoms can be very vague, but here are some guidelines I think everybody is very familiar with. Of course, long-term catheterization can lead to blockage, leaks, trauma stricture, and recurrent UTIs. So what are your options for these patients if they haven't undergone these yet? You can consider urostomy or ileal conduit, which will continue to strain into a bag. However, there is a complication of possible deterioration of the upper urinary tract. Suprapura catheters we're all familiar with. However, here you have a catheter in place all day, and you worry about infections with that as well. The mitrafenov procedure, appendicovasicocosme. Here again, the appendix, similar to the mace. You use the appendix as a conduit between the bladder and the skin. You can also possibly use a C-comb, small bowel, stomach, or ureter, but these have a higher complication rate. Also, if you use the ileum, it's called the Monti procedure. The advantage to this is if they're able to self-cath, it allows them to cath easier. Usually you want to do this with a bladder augmentation. Here's an example of a bladder augmentation. What it does is it expands the bladder and allows it to be low pressure. However, if there is leakage, despite high bladder volume, low pressures, what are other things? With our patients who are aging, we want to think about intrinsic finger deficiency. Is it worsening with age? They can also develop stress incontinence. This lady had pelvic floor prolapse, so could that be contributing as well? What are your options? Ideally, we want to treat the constipation, make sure they're not constipated, lose weight, address the prolapse with a pessary pelvic floor exercises. You can use bulking agents, which I'll show you a figure of in a second. Some of the urologists may recommend a sling to the bladder and neck. There's also something I've never seen personally, but they have these artificial inflatable sphincters that you can implant around the bladder and neck, and the patient can inflate and deflate them as needed. I don't know, has anybody here seen one of these in practice? and then also yeah there are people who get a bladder neck closure for this issue I don't know I think this is the last resort because then definitely you have to catheterize regularly as well so here is what the bulking agents this is a I think the urologist recommends something called coaptite this is what coaptite is they the urologist will go in and he'll inject this bulking agent around the urethra to help create a little bit more resistance and prevent accidents from happening so take home points with neurogenic bowel I think the main thing is to prevent bowel distention and incontinence first we want to address their diet make sure they're hydrated you know they may have to keep a diary to identify triggers as well as your usual medications and considered a transanal irrigation system especially you know don't let the insurance coverage you know stop you from considering this because Medicaid may possibly cover it and also consider a mace or colostomy procedure with the bladder you know again we want to prevent you know kidney failure also help help them with their incontinence you know again you know clean endometrial catheterization is your mainstay of treatment but also consider Mitrofanov or Monty procedure to help them ease if they're doing endometrial catheterization or if they can't you may want to consider a conduit or superpupillary cath again bladder augmentation you know this is things you want to discuss with urologist also address intrinsic finger deficiency stress incontinence weight diet and also consider bulking agents with the urologist or surgery main thing the key to a successful bowel and bladder program is consistency I think a lot of times these people these patients will try something once or twice it may not work but you just have to keep keep at it and keep going at it so thank you again for your attention and dr. Sunil is next awesome good afternoon I realize we're you know in mid Friday afternoon and I'm probably the last step before you enjoying that nice weather nice San Diego weather I'll try to entertain you for a little bit my name is Mike Salino chair of physical medicine and rehabilitation at Cooper I want to thank my colleague dr. moon for inviting me to present on this patient population that I have worked with for a number of years my task for the next little bit is to talk about the approach to pain management in the transitioning patient a common referral point for us as physiatrists is to assist with that these are my disclosures nothing really super pertinent to what we're talking about I don't think I'm talking about anything off-label if I do I will I will try to print that out or point that out rather and because I have a leadership position at Cooper I have to state that nothing that I say is necessarily representing the opinion of Cooper University Health Care so in this is the classification system for all pain but very pertinent in the spina bifida population no see a septic pain meaning pain directly related to tissue damage and that can be either musculoskeletal or visceral pain neuropathic pain which is pain generated directly due to malprocessing in the somatosensory system or nose of plastic pain or central sensitization pain obviously there are overlap syndromes that patients can have both neuropathic and no see a plastic pain but these are the general classifications with regard to pain epidemiology this is the epidemiology in the spina bifida population a higher prevalence compared to non the non disabled patients the most common pain syndromes in the spina bifida population are no see a septic pain visceral and musculoskeletal pain at about a 20% prevalence meaning at any one time if you ask a patient do you have musculoskeletal pain or visceral pain they will they will say yes one out of five times that isn't the lifetime prevalence the lifetime prevalence probably approaches a hundred percent neuropathic pain is about ten percent appears to be somewhat more common in incomplete injuries meaning individuals with spina bifida who have some preserved motor function below their area of injury and the absence of hydrocephalus also appears to increase your neuropathic pain odds and no see a plastic about ten percent obviously representing that you could have overlaps between these syndromes so how do we evaluate spina bifida pain we will not be like Voltaire Voltaire is a 17th century French philosopher had a very poor opinion of physicians he thought that basically we were court jesters while nature took care of everything so like I tell my residents like I tell my fellows don't make it more complicated we don't just absolutely jump to the most advanced studies that we can we start with a basic history and physical examination and judicious use of laboratory and diagnostic studies however the history is a little bit different than our typical pain patient so we certainly and this is often helpful to have parents in the room when you're doing this history what was the initial level of injury how quickly was the neural tube defect repair were there any complications to that was there hydrocephalus or Chiari malformation known in the pediatric age group try to get a description of any spinal decompression or D tetherings D tethering has about a 10 to 15 percent recurrence rate so if someone's had a D tethering procedure recognize that as they move into the adult population you may see it again acknowledge find out about whether they've had a shunt or not and have they had any shunt revisions also important to note is the shunt programmable or non programmable it seems that there is a big division in the neurosurgical world as to whether programmable shunts are beneficial or not you'll get strong opinions on both sides of the aisle no pun intention during election week on whether programmable versus non programmable shunts are appropriate in the spinal bifida population all important pain history if there has been say a history of multiple shunt revisions probably not a bad idea to get baseline imaging before headaches crop up this way if headaches do come up you be able to tell whether there is something new or not that can be a bit of a challenge from an insurance perspective why are you getting imaging if the patient doesn't have active symptoms you have to explain to the insurance provider that there's gonna be a high incidence of recurrence this gives us a baseline and could prevent unnecessary surgery in terms of the more directed pain history again nothing can dramatically different than what we do in other pain patients how long have you had pain what makes it better what makes it worse tend not to use acute pain indices in this population so we're not a huge fan of numerical rating scales or vast bees they're not terrific in the chronic pain patient I use the brief pain index as a brief pain in the inventory excuse me as a little bit better validity in the chronic pain population the PDQ scales is a pretty novel scale it actually can help differentiate for you between no see septic pain and neuroplastic or at least gives you some suggestion of that obviously always look at alleviating or aggravating fact factors key thing that I tell all my residents all my fellows almost on every patient for every condition what has the patient tried what has worked and what has failed and in modern EMR clone noting potential very easy to carry that over from note to note it will make your prior authorization team really happy if you have a nice little paragraph of said patient has tried and failed these six things I see a bunch of nods in the audience because we've all we all bear the scars of prior authorization right some things that are a little bit different about this population compared to the traditional pain population is a functional assessment look at the wheelchair look at the bracing look at the orthotics what is absolutely astounding to me in the transitioning patient is these patients have no idea where their durable medical equipment came from where did you get the wheelchair from Oh DuPont gave it to me well DuPont probably had a vendor who was your vendor I don't know DuPont gave it to me so it's it's a little bit of an eye-opening experience hopefully there's a little sticker on the bottom of the wheelchair or the bottom of the brace but that can be a real challenge I also agree that a psychological assessment might be an appropriate thing mostly how much can a patient participate in their own pain decision-making you know when you're talking about interventions for chronic pain and behavioral assessments and that sort of stuff a psychological assessment can be really really helpful can be challenging to get covered but it is something that I also think is is worthwhile physical examination basically you use your standard spinal cord injury exam is a good way to look at motor and sensory function absolutely full skin inspection there was a colleague that dr. moon and I share with the Jefferson Mike Stillman who's a primary care physician who's done a lot of work in this population 60% of disabled individuals who see a primary care physician never have a full skin inspection never look at the wounds never look at the incisions that sort of thing it I teach my ma's that if we're seeing a spina bifida patient or spinal cord injury patient for the first time make sure that they get the instruction that they wear comfortable clothing so that they we could see all the body parts certainly want to pay special attention to any sensory abnormalities allodynia hyperpathia hyperalgesia etc with individuals who have high enough spina bifida like a thoracic level spina bifida or a bad Chiari malformation you can see spasticity classically we think of it as a lower motor neuron injury but you can actually see a bit of a mixed pattern what we should be experts at is looking how people walk what's their posture what's their wheelchair positioning that sort of thing because that's going to change over time make an assessment of what the wheelchair looks like are the wheels in appropriate condition the braking systems the cushions etc then do all the things that we do in a normal pain evaluation inspect palpate active and passive range of motion and any provocative maneuvers diagnostic testing I'm a pretty good advocate of trying to update any imaging on an individual who's transitioning especially as I mentioned any patient who's had a detethering procedure I think it's appropriate to get a stat an image status when the patient is asymptomatic so if they become symptomatic you can then document a change and make an appropriate referral given the potential unreliability of abdominal exam or pelvic exam you might want to even get a baseline CT of the abdomen you know as dr. moon mentioned lots of these folks have had surgeries you know maybe the appendix is gone maybe they have used a piece of bowel to to augment the bladder get that imaging when the patient's asymptomatic so if the patient does present with visceral pain a year from now five years from now you have a mechanism of comparison again I know that's going to create a little bit of a hassle from a prior authorization perspective but I have found it to be a worthwhile undertaking some special studies everybody should get a DEXA because five years from now ten years from now as our ambulatory spina bifida patients become non ambulatory disuse osteoporosis is going to set in recognize the disuse osteoporosis has a different pattern compared to post menopausal osteoporosis you know we classically examine the hips as in the extremities in the disuse or neurologically related osteoporosis it's actually more common distally in the femur or proximally in the tibia which most DEXA scanners don't have the program for so you're using the hip numbers as sort of a surrogate marker if someone is osteoporotic proximally in the femur they almost certainly are osteoporotic distally in the femur in the tibia that could set them set folks up for a low velocity fracture over time not a terrible idea to for folks to get a colostomy or cystoscopy your dynamic testing is is certainly reasonable referral patterns again and this may be the first time when a patient had a spina bifida patient has pain that they actually see an adult provider and we should be the conduit to that finding a primary care doctor who is interested in this population is worth their weight in platinum luckily in the Philadelphia area we have several Mike Stillman at Jefferson Mary Stevens at Jefferson at Rowan which Cooper is affiliated with we have the risen program is the Rowan Institute for individuals with special needs it is actually a bunch of physician parents who have children with congenital disabilities and they have made their minute their life's work to develop that system also directly at Cooper we have our intellectual are individuals with developmental disabilities hospitalization programs a spina bifida patient comes in and needs their gallbladder removed they're going to have a different set of needs in the hospital that if you and I are going in for a gallbladder removal that's it that's a consult that we could put in through the EMR and get folks involved if you don't have a primary care doc talk to your primary care colleague see if you get someone interested in this any patient who's had a shunt or any patient has got a recent detethering I have neurosurgery see see them just as a baseline they may not need a neurosurgical intervention but I call up my neurosurgeon and say hey this patient has a shunt we at some point we're going to both of us are going to get called that this patient has a intractable headache and is it a shunt malfunction let's both know what they look like before there's a shunt malfunction urology similarly finding a urologist that is interested in neurogenic bladder can be a challenge in certain regions again Dan and I have a tremendous advantage at Jefferson with Pat Chanel on the Cooper side Ron Gore has made it his area of interest also so we have those good resources finding a physical therapist with a good wheelchair clinic is also crucial in this age not age group but transitioning patient because the wheelchair needs are going to change as my colleagues talked about as you go from the community level ambulator to the household ambulatory to the non ambulator weights going to change body dynamics are going to change the wheelchair prescription is going to change getting them connected into a wheelchair clinic at that moment of transition is really really helpful again where did your old wheelchair came from I don't know DuPont gave it to me so get those folks tied in more criticism from our friend Voltaire you know that we pour drugs into people in which we don't know a lot about diseases we know even less for patients that we know nothing there are no FDA approved pharmacologic agents specifically for spina bifida pain there are some medications that we'll talk about this in a moment that are FDA approved for spinal cord injury related neuropathic pain pregabalin being the leader in the clubhouse their spina bifida is a spinal cord injury we could certainly use that as a topic of discussion in terms of the non pharmacologic entities that have been put out there several small studies have shown the beneficial effects of exercises in shoulder pain including appropriate by the biomechanics and wheelchair modification environmental modifications adaptive equipment aerobic activity interestingly there seems to be a synergy with osteopathic manipulative therapy and pharmacologic there was a really good trial in a spina bifida population small one group got OMT one group got pharmacologic interventions the third group got both and there seems to be a synergistic effects patients need to be educated that the indications for therapy in this population are different you know when you're a child you can go to therapy all the time because you could use it under as a developmental tool this patient needs a change in physical it's going through a physical change because of development they need physical therapy that's different in adults right you need to have a specific reason and it doesn't go on forever at least one survey talked about the non-steroidal anti inflammatory medications and acetaminophen were the most common used for chronic pain presumably this is for nociceptive pain above the level of injury but it is not necessarily specific to spinal cord injury there's no formal studies evaluating efficacy quickly talking about anticonvulsants and antidepressants anticonvulsants are first-line therapy for neuropathic pain second line for nociceptive no real formal studies evaluating it in the spina bifida population but if we extrapolate from the spinal cord injury population a little bit there's there's decent data for it as mentioned pre gabalin is approved for spinal cord injury injury associated neuropathic pain attack interfaces with the alpha to subulate subunit of voltage gated calcium channel very similar to other medications there have been two randomized controlled trials and spinal cord injury showing about a 30% decrement after about three to four months I would call your attention to the dosing the average dosing in a spinal cord injury trials between 350 and 450 so many of our patients will come into us and say doc you know they put me on that pre gabalin and I didn't do a thing for me well what was your dose 50 milligrams at bedtime that was not an adequate therapeutic trial most common side effect in fact the reason most people dropped out of the pre gabalin trials was the development of her calcitrin edema this edema is not generally sensitive the diuretic therapy is sensitive to compressive therapy some of the other adverse effects effects are noted there other than pre gabalin gabapentin has probably the the second best evidence basis for this population again I want you to take a look at what the average dosing were was in the neuropathic pain trials of 1800 doc they put me on that gabapentin and it didn't do anything how much were you on 100 milligrams three times a day again that's not an adequate therapeutic trial appears to actually be better tolerated than pre gabalin and with less development of edema but it can have some edema control issues also lamotrigine and to paramed have also been reported no real evidence for the other anticonvulsants there antidepressants considered second line for neuropathic pain first or second line for nociceptive pain the TCA's and the SNRIs are the two big categories there may be some synergy with anticonvulsant therapy these are the bad things that can happen with tricyclic antidepressants obviously if it can make you constipated in the non disabled population it can make you constipated if you have neurogenic bowel deloxitine recalcipam and vesvedinilfaxine are the currently approved sarnies that are around there are others in development they appear to be independent of the antidepressant properties if you're going to be doing interventional procedures on this population make sure your interventionalists know this folks have lost muscle mass in the paraspinal regions they have fatty substitution they have higher incidence of vertebral abnormalities really easy to have adverse effects spinal hematomas accidental dural taps etc so that was a whirlwind tour through this through the pain the growing pains of spina bifida I think we are actually beyond time right yeah oh okay we ended three or 245 oh we ended three okay gotcha we're gonna we'll take some questions then gotcha no I'm good I'm good I thought we were I saw people in the hallway that's all questions for us oh what's that that next session starting at 3 hours so there's a 15 minute break I think all the presenters will be here if you have any particular questions thank you so much for showing up to this this talk and hope you enjoyed it

Spina Bifida

pediatric to adult care

transition challenges

self-management

mental health

sexual health

employment barriers

skin issues

adaptive tools

neurogenic bowel

multidisciplinary approach