Jason Benetti:
Welcome to Let's Talk CP, the new podcast series about all things cerebral palsy presented by the Cerebral Palsy Foundation. Each episode features different clinicians, parents, people with CP and other experts talking about ways to help you better navigate your journey with CP. I'm Jason Benetti, play by play announcer of the Chicago white Sox and ESPN. And I have CP.
Jen Lyman:
Welcome to let's talk CP. I'm your host, Jen Lyman and content manager for cerebralpalsyresource.org. A product of the Cerebral Palsy Foundation. I'm also the parent of a 17 year old son with mixed spastic dystonic quadriplegic cerebral palsy. And today I am so fortunate to be hosting Dr. Debbie Song, a neurosurgeon with Gillette Children's Specialty healthcare and Dr. Marcie Ward, a physiatrist with Gillette Children's Specialty Healthcare. Welcome Dr. Song and Dr. Ward.
Dr. Debbie Song:
Thank you. Thank you very much for having us today.
Jen Lyman:
Well, I'm thrilled to have you both here and let's start with you, Dr. Song. Can you tell me a little bit about who you are and yeah, just give a little introduction to yourself.
Dr. Debbie Song:
All right. My name is Debbie Song. I'm a pediatric neurosurgeon at Gillette. So as a neurosurgeon, I am involved in the diagnosis, treatment and management of certain conditions of the brain, spinal cord and peripheral nerves.
Jen Lyman:
That's pretty fascinating. I'm just curious how you decided to become a pediatric neurosurgeon.
Dr. Debbie Song:
So I think neurosurgery and in particular, pediatric neurosurgery is unique in so far as we can really deal with the brain, the spinal cord and the peripheral nerves. In many cases, adult neurosurgeons have a subspecialty focus. So some may treat brain tumors, some may treat spinal cord tumors, some may treat just degenerative spine conditions. But in pediatric neurosurgery, we really have a full spectrum of conditions involving brain, spinal cord, spine and the peripheral nerves. And we also get to treat patients throughout different stages and ages of development.
Dr. Debbie Song:
In terms of how I particularly or personally got involved in neurosurgery or why I decided to become a neurosurgeon, I think, personally it had a lot of do to do with kind of mentorship of people that I observed and admired throughout training as a medical student that really influenced me. In terms of neurosurgery in particular, it's a really fascinating specialty that involves a lot of technology and there are constantly new developments, new surgeries, new techniques, new technologies that we use that are really advancing the field. Things that we never did even 10 years ago. So it's a constantly moving field.
Jen Lyman:
It keeps you interested and you can see yourself making a difference in the lives of children.
Dr. Debbie Song:
Absolutely.
Jen Lyman:
And what brought you to Gillette?
Dr. Debbie Song:
Oh, so Gillette is a very unique kind of subspecialty specialty hospital. So I really liked the mission of Gillette as well as the care model.
Jen Lyman:
Yeah. Awesome. And Dr. Ward, can you tell me a little bit about yourself?
Dr. Marcie Ward:
Yeah. Grateful to talk with you guys today, Jen, for sure. My name's Dr. Marcia Ward. I'm a pediatric rehabilitation medicine specialist or a pediatric psychiatrist. And I'm at jet Gillette's Children's in St. Paul, Minnesota. And yeah, I think kind of adding on to what Dr. Song said, the beautiful thing about working at Gillette is really being able to work in a multidisciplinary group of providers where our mission is all lined up the same. So Dr. Song's a pediatric neurosurgeon and I'm a pediatric physiatrist, but we both have the same mission for our patients, which is maximizing their function despite any limitations that they have and helping them to do as much as possible in life.
Jen Lyman:
Yeah. And having that team approach and a specialty healthcare setting must be a real special place to work. Well, I was just curious as a physiatrist, I bet you get a lot of questions about what a physiatrist does and kind of describe a little bit more about what you do.
Dr. Marcie Ward:
Yeah. We're a really unique group that not a lot of folks know what a physiatrist is. They confuse us with psychiatrist and podiatrists all the time.
Jen Lyman:
Right.
Dr. Marcie Ward:
But physiatry is actually a medical specialty that was developed in the 1950s and really the work of a physical medicine rehabilitation doctor is to help a patient who has a disability be able to get about and do about and move on and do everything that they want to do in life, despite any limitation that they have. So physiatry training is really about maximizing what a patient can do despite any disability or difficulty that they're having so that they can fully participate in life. And as a pediatric physiatrist, I'm first trained as a general physiatrist and then specialize in working with children.
Jen Lyman:
That's wonderful. And I can imagine that with the kids, that's really, I would think that it's incredibly rewarding because they want to get back to this business of being kids and the business of development and life and play and fun. And to have a career that allows you to maximize that has got to be tremendously rewarding. So Dr. Ward, does a person with CP usually need to get a referral to see a physiatrist? How does all that work?
Dr. Marcie Ward:
Yeah. Yeah. That's interesting, Jen. I mean, it's a little bit variable, right? It depends on what you mean by referral, right? So an insurance company might require you to have a referral to see someone. Maybe you have to have your primary doctor refer you to Dr. Marcia Ward. But I'll tell you that don't need a referral to come see me. I don't require it. So if you were to call Gillette and say, I want to see a pediatric psychiatrist, can I get an appointment? They would give you an appointment.
Dr. Marcie Ward:
Sometimes it's about just locating the resource. So who is in your backyard? I mean, I kind of mentioned that we're a little known specialty. It's only been around since the 1950s and to understand that there's this niche group of individuals that take care of children and adults with childhood onset disability, that's a pretty unique group. So if you don't know that we exist, you're not going to know to look for that referral. If you know that we exist, then teaching your primary doctor about us and saying, "Hey, we'd like to see someone that could help us with this aspect of our life, which really is focusing on maximizing everything that you can do despite any disability or limitation." So I don't think you need a referral unless your insurance company requires you to have one.
Jen Lyman:
Got it, got it. And as far as neurosurgery goes, Dr. Song, is that the same situation with neurosurgery or do you have to have a referral for neurosurgery from a primary care physician or from somebody else?
Dr. Debbie Song:
It's pretty much the same. So usually the patients that I see are referred because they have some imaging concern or they have developmental or structural concern related to their nervous system.
Jen Lyman:
Okay. And are there like specific of CP that typically get referred to a neurosurgeon?
Dr. Debbie Song:
Well, the patients that we see with cerebral palsy typically as a neurosurgeon, I offer cervical treatment. So the two main conditions that I typically see in patients with cerebral palsy are hypertonia whether that's spasticity or dystonia or hydrocephalus. So a portion of patients with CP have hydrocephalus and have surgical issues related to hydrocephalus. And so those are the two main conditions that patients with CP have that I surgically treat.
Jen Lyman:
I see. Okay. Dr. Ward, I know in my personal experience with physiatry, one of the big things that I've been so impressed with is the equipment part of it and the physiatrists' understanding of equipment and really being able to make recommendations and understanding how the different wheelchairs work and the different bracing and the different gait trainers and different mobility devices. That's been something very impressive that we've seen in our personal situation. What are some other reasons that somebody would see? I know participation is a big deal for physiatrists. Why else would somebody see a physiatrist?
Dr. Marcie Ward:
Boy, Jen, really the work that we do is so comprehensive and so much focused on looking at the entire patient and how to maximize what they're able to do. So, in coming to a physiatrist, I mean, some of the main things that we're doing is yeah, we're triaging to make sure that the patient is doing everything from a mobility standpoint that they can. So we want our patients to be able to get about for short distances in any manner that they can. Medium distances for any manner in which they can. And long distances because that's how we get out in life. Right?
Jen Lyman:
Right. Right.
Dr. Marcie Ward:
And so we're looking to see for a short distance, will a pair of crutches do? If they even need that. Maybe they only need a brace for short distances. For very long distances, maybe they need a power wheelchair. And then there's every scope of piece of equipment on the in betweens. But looking to get out in community is number one.
Dr. Marcie Ward:
Number two is taking care of yourself as best you can or participating in your cares as best as you can. And sometimes that's equipment, again. So then sometimes we're back at a shower bench or a bath chair, but maybe it's not even that. Maybe it's a grab. Maybe it's none of that. And it's learning with the help of a speech therapist and an occupational therapist of how to direct your cares. Please, now will you do the shampoo for my hair? So there are things that we can provide independence for the patient in their activities of daily living and what they do. When we think about even a therapy intervention, such as an occupational therapy or a speech therapy visit. Speaking of speech therapy, then we're also looking at how they communicate, how is the patient able to communicate and interact in their environment? Sometimes, and frankly, many times there are no concerns with communications whatsoever. But if there are challenges, then how do we help maximize that? Is it speech therapy? Is it augmentative communication devices? Other supportive means of helping the patient to interact in the community.
Dr. Marcie Ward:
So those are some of the things. Braces, I touched on that briefly when I was talking about moving from place to place, think about the orthotic that will maximally support the patient in their activities, but not overdo it. It's part of the balance as well. We want to give you all the bells and whistles that you need, but not so much that you don't need because that gets cumbersome. And for our pediatric patients, it's partly about getting the kids into school, interacting with school, interfacing with school because the work of a pediatric patient is being a student. For our adult patients, it's about how do we get you into community? How do we get you into gainful employment? How do we get you independent in your community? So sometimes it's resources with social work and teachers and neuropsychologists that help us with understanding how the brain works.
Dr. Marcie Ward:
So it's really, as a physiatrist, a lot of coordination of what's needed to get the patient more into life and reach the goals that they're trying to reach despite the limitations that they're dealing with. And so it's harnessing those tools, whether it be equipment, orthotics, therapies, support services. And for me in particular the last level of that is really getting them into community deeply, so with recreation or with sport. And so that is part of my typical visit with a patient is making sure that we're getting them into community in that manner.
Jen Lyman:
Yeah. And that's something near and dear to my heart, for sure. And the way you just elaborated on all of this, it sounds a lot to me like a physiatrist is sort of a quarterback and you're kind of managing the whole team there and you ultimately can have the capability, maybe not in all systems, but in a lot of systems, have the capability of managing a lot of the different team members for the cerebral palsy patient and potentially across the lifespan. Am I onto something here or is that?
Dr. Marcie Ward:
Yeah, no, I think that's a great way to describe it. I'm so bad with football references but I think quarterback might be okay. But I think of when Dr. Song and I work together, it's incredibly collaborative. If I have a patient who I think may benefit from her services, then I refer them to visit with her about something in specific. But typically, what I'll hear back from her is yes, that's a great idea. And by the way, have you thought about this or have you talked to another specialist about that? And then together she and I will be contacting another specialist or coordinating with another specialist and on and on it goes. So for us, when we're working together, we're really working together. It's not that I refer a patient to Dr. Song and never see them again. And she doesn't refer them to me and expect that she won't get to visit with them again either. We're continually working together on patients.
Jen Lyman:
Yeah. So that leads me to my next question, which actually was an experience that we've had as a family where it has been a collaboration between a neurosurgeon and a physiatrist which is specifically about the baclofen pump. And in our situation, the baclofen pump was placed by the neurosurgeon and is managed by the physiatrist. So let's talk about that. Dr. Song, maybe you can tell us about what a baclofen pump is and then maybe making an assumption here, Dr. Ward, but maybe you could then talk about how it's managed, if that makes sense.
Dr. Debbie Song:
Yeah. So yeah, Baclofen is a medication that we use to help with muscle tightness, muscle spasticity. And we can also implant a device called a baclofen pump through an operation that also treats hypertonia. So the baclofen pump consists of a pump that looks like a hockey puck that sits underneath the skin in the abdomen. And it's connected to a catheter, which is basically a thin hollowed tube. That catheter is tunneled underneath the skin, and then goes into the spinal fluid sac, so called the dural sac. And the catheter tip sits in the spinal fluid, which is a fluid that bays the spinal cord and nerve roots, and continuously delivers baclofen into the spinal fluid.
Dr. Debbie Song:
So patients can get baclofen and they can take that orally, or they can get it through their G-tube. Oftentimes baclofen tablets or baclofen medication that is taking either orally or through the G-tube to get a kind of an appropriate effect and a reduction in muscle tone, patients may develop systemic side effects. And so the baclofen pump is a way that you can deliver that medication to the spinal fluid space. And so for various reasons, you don't need as high a dose that your body sees through the baclofen pump, as you would take through a pill. And so the systemic side effects are a lot less with a baclofen pump. And so that benefits people and treats their muscle spasticity and in some cases, their dystonia as well.
Jen Lyman:
And can you talk a little bit about, Dr. Ward, I'm making an assumption that you manage baclofen pumps. If not, maybe you can still talk about it for us, or if not, Dr. Song maybe you can talk about it.
Dr. Marcie Ward:
Sure. No, I'm happy to talk about it. The neurosurgeons do the heavy lifting of doing the intrathecal baclofen pump implantation and the surgery to place the catheter for us. And after the patient has recovered under their care for the first few days post-operatively, then they move over so that the rehabilitation medicine team takes care of them and manages their pump. That's not the same at all institutions. At some institutions, I suspect the neurosurgeons and their team of support staff are managing the pumps, I imagine. Sometimes I believe the neurologists I know of are doing it as well. But at our institution, yeah, the physiatrists are managing the pumps. It's usually a matter of figuring out a delicate balance of the dose of the medication to see if we can reach what I refer to as the sweet spot, which is where the intrathecal baclofen is reducing their spasticity and their hypertonia best, but not leaving them with any side effects of oh, I'm too weak, or oh, I'm having trouble holding my head up, or now I can't stand as easily or now I can't walk as easily.
Dr. Marcie Ward:
So that's a little bit of a balance. If we take away too much of the tone, sometimes the lower extremities can be left weak or the trunk can be weak or the head and neck can feel weak, but we're adjusting that dose usually over a period of time. Sometimes arriving at that sweet spot comes quickly. And we know that before the patient even leaves the hospital. And other times while the patient is back into their own environment, their own typical day, we're adjusting that maybe every week, every couple weeks, every month to get it just right so that the pump is doing its best work for them throughout their days.
Jen Lyman:
Yeah. And it seems like there's some major advantages to it. And then there are some disadvantages. You do have to go back to the hospital, have it refilled and programmed and that kind of stuff. But for some people, it does seem like it's a really great alternative to oral baclofen. Kind of staying with neurosurgeries, can you tell us a little bit about SDR and how would a family or an adult know when they should consider something like selective dorsal rhizotomy? I think this would be a good one for Dr. Song still.
Dr. Debbie Song:
Sure. An SDR or a selective dorsal rhizotomy is a operation that neurosurgeons do to permanently reduce muscle tone and eliminate spasticity, particularly in the lower extremities. So there are different variations about how an SDR can be done, but essentially they all involve looking at the sensory nerve roots that carry information from the lower extremities, testing those sensory nerve roots, and then cutting the abnormal nerve roots. So it's basically that spasticity is due to overactive abnormal signals that are carried by sensory or what we call dorsal roots.
Dr. Debbie Song:
So during an SDR operation, once we have the sensory roots exposed that carry information, like I said, from the lower extremities, I always have a pediatric physiatrist, either Dr. Ward or one of her colleagues in the operating room with me. And so when we isolate a sensory root at any given lumbar level, for example, we divide that root into tiny, tiny rootlets, so we can tease it apart. And then we literally test each of those tiny rootlets with a little bit of electrical current. And Dr. Ward is monitoring kind of the leg responses to that stimulation that we do on that rootlet. And she has certain criteria where she says, yes, that looks like it's an abnormal rootlet that's contributing to spasticity. And if that's the case, we cut that rootlet. If it does not test abnormal and is not thought to be contributing to spasticity, then we don't cut that rootlet.
Dr. Debbie Song:
So [inaudible 00:22:20] test maybe 150, 200 nerve rootlets, 20 to 40% of those rootlets.
Jen Lyman:
Wow. That seems like a scary endeavor.
Dr. Debbie Song:
So it's a way, again, to permanently reduce tone and get rid of spasticity. So it's typically a one and done deal. In terms of who should consider getting an SDR, there are certainly criteria that we use that we evaluate patients by, because I think that one of the most important and biggest predictors of how people will do after an SDR is really patient selection.
Dr. Debbie Song:
So the typical candidate that we consider for an SDR is somebody who has primarily spasticity in terms of their hypertonia, not so much dystonia. The patient usually is usually ambulatory with or without assistive devices. They should have enough underlying strength as Dr. Ward alluded to. If you have somebody with a fair amount of hypertonia and you suddenly make their legs really relaxed, they may be using some of that tone for strength. So if they don't have enough underlying strength and they all of a sudden become very loose after an SDR, then that's not ideal either. So we want to make sure that they have enough adequate underlying strength. We're not cutting any of the motor roots that carry kind of motor signals that actually help your muscles positionally move, but we are definitely making them looser and eliminating the spasticity.
Dr. Debbie Song:
Typically, the patients are somewhere around the four to eight year age range, but that's not to say we haven't done patients, or we haven't done rhizotomies in patients who are much older. But after an SDR, you really have to retrain your muscles to move in a different pattern, in a different way. So people really learn to do everything again from in terms of a motor development standpoint. So they learn how to roll. They learn how to sit, crawl, walk in a completely different way after an SDR, which makes the rehab portion following an SDR really critical. So Dr. Ward can kind of get into more deal detail about that, but the surgery is one component, but a really equally important component of making sure SDR is successful is the postoperative rehabilitation that patients go through.
Jen Lyman:
So yeah, you nailed it right there. That was where we were heading with this. And what is the role of pre and postintervention rehab for these neurosurgical procedures and also other procedures like botulinum toxins or orthopedic surgeries. Dr. Ward, can you maybe elaborate a little bit more on that?
Dr. Marcie Ward:
Yeah. I'm happy to Jen. What I would say is anytime you're going to undergo a surgery, no matter what it is, you want to be in your best shape and your best health and your best fitness before going into that intervention. So as far as pre-intervention rehab, no matter what procedure we're recommending at Gillette, be it a selective dorsal rhizotomy for hypertonia, be it single event multi-level orthopedic surgery for gait impairment and bone realignment. Our mantra is we want you to be strong before you go to surgery, because then you're going to be able to use that strength to recover after surgery. So from our standpoint, we definitely want our patients as strong as possible beforehand.
Dr. Marcie Ward:
After an intervention like selective dorsal rhizotomy, I mean, Dr. Song is right. We are just very, very much interested in making sure that our patients undergo a rehabilitation course that is going to support them so they have their best outcome. For a family to undergo such a significant procedure, we want to give the child or the patient with cerebral palsy the best outcome possible. And that means having a team that's dedicated to getting them back on their feet as soon as possible, and enjoying their best outcome, doing their best, following that intervention.
Dr. Marcie Ward:
So the rehabilitation after a rhizotomy is not uncommonly done in the hospital for a period of time. Not because Dr. Song has made them weak by cutting motor nerves, but because, like she said, the therapy team is really taking them back to getting used to moving those legs now when there is no hypertonia in the way. And that's a little bit of a different movement because they've always either worked with or worked around their hypertonia. Once that is taken away, they need to have someone to help guide them safely through getting strong once again. Same is true after orthopedic surgery. When the kids undergo that, or when our young adults undergo that as well. But after a period of time of being on the inpatient unit, they are transitioned to their home program with their outpatient therapists that have cared for them all along, continuing to work on getting back to the business of being in life.
Jen Lyman:
That's fascinating. And I would think that the kids are pretty excited to make their way back to the business of life and being kids again, and being able to move in a different way that's hopefully a little less restrictive and definitely a little bit easier, which has got to be pretty rewarding for you both to see. Where would families learn more about outcome measures and what to expect for these different interventions?
Dr. Marcie Ward:
That's a really great question. It's hard to get really good, solid, scientific answers if you're not in the medical community and not familiar with how to locate scholarly articles to be true, Jen. It's significantly easier to get online and get a lot of false information. So I would say really leaning on your doctors and your care team to help you with what is available regarding literature that supports interventions, that you're considering that your team is considering when you're trying to evaluate, well what could we expect if we are moving forward with this intervention. Leaning on what your knowledgeable care team shares with you and if your interested looking at a paper, asking them if they can share it. But yeah, unfortunately there is a lot of information that's available on the internet that is inaccurate and sometimes completely and utterly false. So really to get true and good information, getting in with a good care team and pressing them for that, I think is going to be the safest way for our families to seek that out.
Jen Lyman:
Yeah. And I think I just, as a parent, I find that just being completely honest and open with your care team and having these conversations and really saying this is what our goals are. And having that shared decision making and know what your expectations are and what your provider's expectations are, are on the same page. And that you don't have false hopes. And that the surgeries and the choices that you're making are appropriate for your child and together you're making these decisions, which kind of leads me to the next question about, and I wanted to ask y'all about other global tone management strategies or surgeries, just so that families would know the difference between an SDR or perhaps eventual dorsal rhizotomy so that people can know this one might be more appropriate for ambulatory children. This one might be more appropriate for children who are non-ambulatory, who need more help with caregiving or the parents might need more help with caregiving or pain and that kind of stuff. Dr. Song, could you talk a little bit about that?
Dr. Debbie Song:
Sure. So for the SDR, we typically again think about patients who are ambulatory, but they have multi-level spasticity that's affecting multiple muscle groups in their lower extremities that is getting in the way with their walking. The other thing should be considered in any kind of global tone management surgery is that if patients have, for example, orthopedic issues that will require intervention, oftentimes we would like to get tone under good control before proceeding with a major orthopedic intervention. And so global tone management, whether it's a form of rhizotomy, a SDR, or what we'll talk about in a second, the VDR or a baclofen pump is helpful in making orthopedic surgery more durable. So, again, SDR usually for ambulatory patients with mainly spasticity, limited or no dystonia.
Dr. Debbie Song:
There is another operation, a variant of the SDR, which is called the ventral dorsal rhizotomy, which is newer procedure that we've done at Gillette for, I would say the last eight years or so in patients who have severe hypertonia, both spasticity and dystonia in their lower extremities. And it's really meant to treat hypertonia so we can improve pain and positioning and family's ability to care for a patient. So in terms of CP patients, it's usually the patients who are non ambulatory, who have a GMFC level four or five, for example.
Dr. Debbie Song:
And what the ventral dorsal rhizotomy also sometimes referred to as a palliative rhizotomy entails is again, getting access to the nerve roots that are carrying information to and from the lower extremities. So we look at not only the sensory or dorsal roots, that kind of mediate spasticity, but we also look at the ventral or motor roots that are thought to mediate dystonia. So we actually cut about 50% of the sensory roots and about 90% of the ventral or motor roots. And we do this in a non-selective manner, meaning I don't tease apart those roots and then test each of them. But we basically tease apart those nerve roots and then cut in a non selective manner the sensory roots and the motor roots to treat both spasticity and dystonia.
Dr. Debbie Song:
So obviously if we're cutting the motor roots in a eventual dorsal rhizotomy, patients are going to be permanently weak. So this is not a intervention that we would consider if somebody has functional ambulation or if they have volitional movement. So if somebody comes in for example, and says, "Yes, my child is not walking and has severe hypertonia, but yet they can kick out their leg. And that's very important for their quality of life. They get a lot of joy from doing that. They can maybe kick when they're swimming in the swimming pool." We would not consider a ventral dorsal rhizotomy, because I can't guarantee that after that surgery, that they would still be able to have volitional movement in their lower extremities.
Dr. Debbie Song:
But again, a ventral dorsal rhizotomy...
Jen Lyman:
[inaudible 00:34:46] measure.
Dr. Debbie Song:
Yeah. So in a ventral dorsal rhizotomy, again, it's for people who have really severe tone that's causing a lot of pain, or they have significant orthopedic issues that will eventually need to be addressed, or really, because of their tone, caregivers can't provide cares comfortably for them. So they have difficulty getting them in a wheelchair, they'd have difficulty getting them dressed, getting them diapered because of the hypertonia. And so, again, that's really meant to treat lower extremity spasticity and dystonia.
Dr. Debbie Song:
And then again, the third thing we talked about was a baclofen pump. We have control over where we put the tip of the baclofen pump catheter. So we can usually put it in the mid thoracic region, which would provide some relief to the arms, as well as the legs, unlike a ventral dorsal rhizotomy, or a selective dorsal rhizotomy. At certain doses of the baclofen pump, you can get a effect on dystonia in addition to spasticity. And again, the baclofen pump is something that you can modulate. You can turn it up, you can turn it down. You can even turn it off or take it out if you really don't like the effects of it. So if you have somebody with mixed tone, spasticity, and dystonia, yet they have some function in their lower extremities that they can either do some crawling, do some walking, the baclofen pump may be a good option for them.
Jen Lyman:
Yeah. Yeah.
Dr. Debbie Song:
Finally, for patients who have mainly dystonia, in certain cases, they may be a candidate for something called a deep brain stimulator, which is something that is also done at Gillette. Dystonia is a different type of high tone. And in certain cases of dystonia, the DBS or deep brain stimulator may be a good option, which is basically a neurosurgical procedure where leads are implanted into deep areas in the brain and then the leads are connected to a generator which can, again, control and send signals to help with dystonia and certain types of movements.
Jen Lyman:
Are there any kind of contraindication?
Dr. Debbie Song:
Yeah. So, yeah, so yes, but you would need to get your device checked out. So that's a common question. For example, with the baclofen pump, you can go through the metal detector without problems, you can get an MRI scan, but the Baclofen pump needs to be checked after the MRI as well.
Jen Lyman:
Right.
Dr. Debbie Song:
We anticipate that the pump will often stop during an MRI scan, but then it should restart. But anytime somebody gets MRI and has a baclofen pump, that pump needs to be interrogated after the MRI scan interrogation. Interrogating the baclofen pump, changing the dosage, that can all be done through kind of a wireless programmer that just sits on top of the pump. So it's painless. The pump also needs to get refilled at regular intervals, and that can be done in the office just by putting some numbing spray over the skin that overlies the pump and that can be done quite easily.
Jen Lyman:
And I think that's probably the, for some families, maybe the only thing that I've seen as a big downside, or there is some planning that goes into pump refills and ensuring that you do have a team that's nearby, or if there's travel time to go to get your refill or to have it reprogrammed to have the resources or the capability of traveling to your doctor on a regular basis for that kind of thing if you do have a baclofen pump.
Dr. Debbie Song:
For sure. The pump requires maintenance.
Jen Lyman:
What advice would you give to families who are early in their CP journey? We'll start with you, Dr. Ward.
Dr. Marcie Ward:
Oh, that one's pretty easy, Jen. So the time you put in will reap the rewards. Getting in with a team, asking hard questions, continuing to seek. I think that's the advice that I would give. It is a marathon raising a child. Okay? And yeah, so I'm speaking to the choir, Jen, when I say it is an ultra-marathon when raising a child with special needs. So I think that getting comfortable in the work and the rewards that come with it early on and being ready for a remarkable and adventurous journey, I think that is the message that I'd like to give them.
Jen Lyman:
That's beautiful message. And I know a lot of families definitely appreciate it. I know, as a parent, I absolutely appreciate it. And I feel strongly about including your child in everything you do, and just ensuring that they're part of it and part of life. And that's been our mantra as a family and ensuring that our son is with us and he gets to participate in every way, shape and form there is for him to participate. And so now to hear physicians say, "Hey, get out there and be part of it, put in the work, do all this," it's great. Dr. Song, do you have any advice for families early in their journey or families considering major surgeries?
Dr. Debbie Song:
In terms of just considering major surgery, you just really need to be comfortable with not only the surgeon, but just try to educate yourself as much as possible. Other advice, I think I echo exactly what Dr. Ward said, she said out very well.
Jen Lyman:
Yeah. Yeah. And is there anything else you all wish more families knew?
Dr. Marcie Ward:
I would say that earlier in our discussion, you had made mention of discussing the goals of the patient and the family with their care provider. And I would caution any patient or family if the provider is not asking you what your goals are, it could be that the two of you aren't working toward the same goal. And so be sure that your care provider understands what the goals are that you have in mind for your own care or of your child with cerebral palsy.
Jen Lyman:
I really appreciate that advice.
Dr. Debbie Song:
And the other thing I would say is that it's okay for those goals to change as you get older. So the goals that you may have, and the aspirations that you may have at three months may be different than three years that may be different than when somebody's eight years old or 12 years old or 20 years old. So we try to optimize function and align kind of any kind of interventions with the patient and their family's goals, but those goals will change with time. And we recognize that.
Dr. Marcie Ward:
Yeah. That's part of the journey. That's part of the adventure, for sure. Thanks for pointing that out, Dr. Song.
Jen Lyman:
Absolutely. You both have been fabulous. I've truly enjoyed having this conversation with you both. I have learned so much and it's really been a pleasure to have you both on Let's Talk CP and I'd like to also acknowledge that this episode was made possible with the support of Gillette Children's Specialty Healthcare. And really, thank you both.
Jason Benetti:
Thanks for joining us for this episode of Let's Talk CP. I'm Jason Benetti, CPF ambassador and sports television announcer. If you like our show and want to know more, please visit our new CP resource page at cpresource.org, where you can listen to all of our episodes and subscribe so you'll never miss a show. While you're at it, if you found value in Let's Talk CP, we'd appreciate a rating. And please tell a friend or another family member about the show to help others and increase Cerebral Palsy awareness and education. Be sure to tune in to Let's Talk CP for our next episode.
Disclaimer
This podcast represents the opinions of our guests and the content should not be taken as medical advice. Each person and situation is unique. So please consult your healthcare professionals for any medical questions.