TRANSCIPT
Jason Benetti (00:06): 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.
Cynthia Frisina (00:33): And I'm your host, Cynthia Frisina the vice president of the Cerebral Palsy Foundation, creator of National Cerebral Palsy Awareness Day. And most importantly, mom of two wonderful daughters. My youngest daughter, Cathryn has CP and is the reason I got involved in advocating for other families and for more CP research.
Cynthia Frisina (00:55): On today's episode, I'm thrilled to be talking with Dr. Hank Chambers, a pediatric orthopedic surgeon at Rady Children's Hospital in San Diego, who also serves as a Professor of Clinical Orthopedic Surgery at the University of California, San Diego. One of the most important things about Dr. Chambers that I wanted to share with you today, especially because we're talking to families about navigating their CP journey, is his family.
Cynthia Frisina (01:25): Dr. Chambers' wonderful wife, Jill, is active in many local and national patient advocacy groups and a healing touch provider at Rady Children's Hospital. Dr. Chambers also has an adult son with CP, who currently lives independently with support, and another son who is a pediatric orthopedic surgeon at Nationwide Children's Hospital in Columbus, Ohio.
Cynthia Frisina (01:50): Dr. Chambers, welcome.
Dr. Hank Chambers (01:53): Well thanks, Cynthia. That was way too long of an introduction, but thanks.
Cynthia Frisina (01:58): It could have even been longer with all of the things that you've accomplished and done, but we are so excited for you to be one of our very first guests on our new podcast initiative. Because as you know, families are always in search of more information and really being able to hear from clinicians, clinicians who can share information.
Cynthia Frisina (02:18): But the thing that makes you one of the unique clinicians who can really add that family, human aspect, is that you are also a father, a father of a son with CP as well as a husband, and you've really been involved in the CP community. So thank you for joining with us today.
Dr. Hank Chambers (02:39): Yeah. Well, thank you so much for this honor, and I do have experience of seeing this from both sides of the equation, and I hope that maybe I can share some insights with you today.
Cynthia Frisina (02:49): Well, we're really excited. Now the focus of the episode today, is to be able to share with families what they can expect when they have a medical appointment with a clinician like you for their child with CP. So many times parents are really nervous and they don't know what to expect when they have a medical appointment, especially with someone who might be an orthopedic surgeon or if a specific procedure may be discussed such as surgery or botulinum toxin injections or something like that.
Cynthia Frisina (03:21): And so, really wanted to get your thoughts and opinions and recommendations for families of how they can make that whole process a little bit more pleasant and just be most effective and beneficial for their child. But we thought we might start with the question that I think a lot of families still don't fully understand of, what is cerebral palsy?
Dr. Hank Chambers (03:47): So cerebral means brain, so that is what is the cause of the injury. There something happened to the brain that sometime during either before the child was born or up to the age of two, almost by definition, if anything happened to your brain during that time, and it's usually an injury or a developmental problem. It could be something like not getting enough oxygen to the brain, although that's actually pretty rare. It can be due to prematurity. If your child's born before a full term, they could have an injury to the brain where the cells aren't in the right place, so that can cause cerebral palsy.
Dr. Hank Chambers (04:30): And unfortunately, things like a head injury can cause it when the child's one or two years old. And other things like a stroke, a child could have a stroke either while they're in the womb or slightly after birth. And that can cause the child that has cerebral palsy that's on one side.
Dr. Hank Chambers (04:49): So there's different gradations of cerebral palsy from children who are very mild and you can hardly tell they have cerebral palsy, to children who are completely involved and are in a wheelchair and have to be fed. So once again, there's a huge range, so that every child is different. So it's hard to put people in big groups. So when it's your child, you're only concerned about your child and not the big groupings.
Cynthia Frisina (05:21): Absolutely. Maybe you could also describe some of the more common types of cerebral palsy that families may not really fully understand that either.
Dr. Hank Chambers (05:31): Yeah. So based on where the lesion happened in the brain or where the injury happens in the brain, you might have one side of your body involved, and that's called hemiplegia. So the upper extremities and the lower extremities are involved on, say on the right side. You can have what's called diplegia, which is where the lower limbs are more involved than the upper limbs. And there's a movement both in Europe and the United States, to call that either unilateral, which means one side or bilateral, which is both sides.
Dr. Hank Chambers (06:04): And then there are also people that have cerebral palsy where their total body is involved. And that's called either total body involvement cerebral palsy, or a quadriplegic. And so that just kind of tells you where in the brain the injury is and how that affects the rest of the body.
Dr. Hank Chambers (06:24): But then we also subdivide it based on the movement disorder that your child might have, or you might have. And that is, I think, called spasticity. And spasticity is the reaction of a muscle to a rapid stretch. And so those of you who have seen in the doctor examine your child, or maybe examine you, when they use the reflux hammer that actually stretches the tendon and then your muscle fires really quickly. You may have seen that on your child and that's what spasticity is.
Dr. Hank Chambers (06:53): There are other movement disorders such as dystonia and that's for the kids and adults who are more severely involved. They usually are the kids that have quadriplegia. And that's kind of when your child postures, they moved their arms in a certain position, or they grimace when they talk or they turn their head one way. And that's different from just from spasticity, because it's a different part of the brain that's affected. Many children have a little bit of both.
Dr. Hank Chambers (07:22): The other types of movement disorders are a thing called ataxia. And ataxia is kind of when you walk, that every step is different from the step before. I hate to use this, but the analogy is like someone who's had too much to drink, so they kind of walk differently.
Cynthia Frisina (07:41): Yes.
Dr. Hank Chambers (07:43): So it's got almost the same cause actually, with the brain when you drink alcohol. So a lot of children have all of these together. So when your doctor says your child has, for example, spastic diplegia, that tells us what type of disorder they have, as far as where it happened, where it's occurring, but also, what the movement disorder is. And in this case, it's spasticity.
Cynthia Frisina (08:10): That is so helpful. I mean, just for families to be listening to you describe this in such an easy way to understand, is going to be so helpful for them. And one question I know that parents and caregivers struggle with sometimes, is how do they know when they should see an orthopedic surgeon and make an appointment with someone like you?
Dr. Hank Chambers (08:33): Yeah, there's a lot of different models around the world on how children with cerebral palsy are seen. In some places, there's a developmental pediatrician, which is a really good model, where there's a pediatrician who takes care of all the issues related to cerebral palsy. Most patients still have a primary care pediatrician to take care of colds and fevers and things like that. But then they have a developmental pediatrician who helps manage all of their issues related to cerebral palsy. So that's one model.
Dr. Hank Chambers (09:09): Another model is where you have a primary care pediatrician or internist, for example, and then they refer you to a physical medicine and rehabilitation doctor. I think you might have also heard those people called physiatrist or physiatrist once again, how do you pronounce that?
Cynthia Frisina (09:26): Right. That's a confusing one too.
Dr. Hank Chambers (09:31): Right. And so those doctors are specialized in the management of the movement disorders that I talked about, spasticity and dystonia. They're also experts in physical therapy and occupational therapy, at least getting you to those specialists. And many times, in those models where that's happened, those are the ones that we refer you to an orthopedic surgery, because they see something that's out of the ordinary and that might be managed better by orthopedic surgeons.
Dr. Hank Chambers (09:59): In some places, the orthopedic surgeon is the primary doctor that you see. And that's where you were, for example, when I first moved to San Diego, there were no physiatrist in San Diego, so all the patients came to see me and my partners and we would take care of everything. We take care of their spasticity management, their braces, prescribing physical therapy, and of course, prescribing and performing the orthopedic surgery.
Cynthia Frisina (10:29): What other kinds of procedures does an orthopedic surgeon most commonly perform to help children with CP? I know there's lots of different orthopedic surgery procedures. Are there other kinds of procedures or treatments that you focus on as well?
Dr. Hank Chambers (10:47): Yeah, so many of us that take care of children with cerebral palsy are also well versed in the management of spasticity and dystonia. And so many of us do our own injections of botulinum toxins. We'll prescribe some of the oral medications you might have heard of, such as Baclofen or Valium even, for their spasticity management.
Cynthia Frisina (11:15): That actually brings up a great question. We get so many questions from families about what to expect at an appointment. So if a family or caregiver was making an appointment with you, what would be a normal expectation to have in their first appointment with you, and how could they prepare to make that appointment as beneficial? From your perspective as a orthopedic surgeon, what advice would you give from that perspective and what could they expect?
Dr. Hank Chambers (11:50): Yeah. A lot of that depends on, once again, the severity of the cerebral palsy and also their age. When I see a 10 year old, it's a different exam and a different experience than a two year old. But just in general, if this is the first time you're seeing me, you've seen maybe the physical medicine and rehab doctor, you have a developmental pediatrician, we like to have all of the records.
Dr. Hank Chambers (12:16): So if you're coming from a distance and you're not in a computerized system, like many places are now. But if you aren't, for us to have the records of what happened at birth, what medications you're on, what kind of physical and occupational therapy you're getting; are you getting any speech therapy? We want to know the whole picture, before we see you, we'd like to have that information before we even the walk in the room.
Dr. Hank Chambers (12:42): And then of course, we're going to ask you the questions about, first of all, why you're there to see us. And many times, it's because they're walking on their toes, for example, and they're turning inward or they're falling more. So we want to get an idea of why you're there.
Dr. Hank Chambers (12:55): Then we'll do a complete physical examination, and part of that would be mostly range of motion of all of the joints of your upper and lower extremity. We'll assess for the strength of the muscle. We'll assess whether your child has the ability to control the muscles. Sometimes you might have a muscle that is actually pretty normal, but your brain can't communicate with that muscle to get it to work the way it's supposed to work.
Dr. Hank Chambers (13:23): We'll watch you walk if you can walk, whether it's without braces with braces, with or without a walker or crutches. Then, if you're someone who's not walking, we're going to examine your wheelchair to make sure you have the right wheelchair and the right seating system. And many times, we'll get x-rays of your hips and sometimes of the feet and the knees, but we're getting x-rays of your lower extremity. And as your child gets older, 9, 10, 11, 12, we'll start getting x-rays of the spine so we can follow that. And once again, all of these things are going to be different, depending on the severity of your child's cerebral palsy.
Cynthia Frisina (14:12): When a parent has that initial appointment, and let's say that at some point you make a recommendation either for surgery, or maybe it's botulinum toxin, or some other treatment or procedures, what kind of questions would you recommend that a parent or a caregiver ask you in considering or weighing all the options, or just being able to become more informed about what might need to happen for their child? What recommendations or advice might you give?
Dr. Hank Chambers (14:50):Well, I think anytime go to any doctor, all of us are anxious for, "What are you going to tell me?" But I think for parents, it's always harder because they've already probably seen seven or eight other different doctors. So it becomes difficult. I think, most of the parents that I see are very sophisticated. They've read, they now can go to CP Resources at the CP Foundation and get much more information. And that really helps our conversation. It's always hard when people come in and don't even know what cerebral palsy is, but we're happy to educate them, but as I say, we're getting much more sophisticated consumers these days.
Dr. Hank Chambers (15:33): The questions you ask, say, if I recommend surgery, and I try not to recommend surgery the first time I see someone. I'd like to know the family better. I like to know the child better. But if for some reason, they come and one of their hips is dislocated, I'm going to sit down and tell them, "This is what I think needs to be done." I'll tell them, you should ask the doctor, "Why you think this surgery needs to be done?" Or, "Why this intervention," whether it's botulinum toxin or oral medication. "Why does my child need this?" What are the expected outcomes? "If you're going to do this, what do I expect, say three months from the surgery or the intervention?"
Cynthia Frisina (16:13): What advice would you give to parents in thinking about that? In terms of that whole orthopedic spasticity management from childhood through adulthood? And what age do you think it's really helpful to start bringing the child into the conversation, in terms of their treatment plan and how they think about that?
Dr. Hank Chambers (16:40): Yeah. I'm a believer in getting your child involved as soon as they cognitively can, if they can understand what's going on. I rarely talk to the parents. I talked to the child right away and as much as they can understand, and hopefully the parents can hear what I'm saying. I'll answer the parents questions directly, of course, if they have any, but I think it's important for we physicians to not ignore the kid in the room. And that often happens in someone with cerebral palsy. So I always talk to the child first and see what they want to know, see what their concerns are.
Dr. Hank Chambers (17:21): Your question is really an important one. It's talking about the lifespan of the child. And so when I see a three year old, I'm thinking of, "What's this child going to be when they're 40?" And I do that all the time, because if I think of just short term, there would just be a lot of little small interventions maybe, or maybe not do anything because I said, "Well, this kid's three years old. Nothing's going to happen to them right now." But I'm thinking, "What's going to happen if I don't do this surgery and their hip could completely dislocate and they're in pain when they're 30. And I think that's an important way to think about orthopedic surgery and actually all the other things.
Dr. Hank Chambers (18:05): Transitioning from childhood care to adult care is a huge issue. And I know it's on the Cerebral Palsy Foundation website and there are a lot of adults that are giving advice about this. I think as a doctor and also as a parent, we should start talking about transitioning to adult care when the child is a teenager, when they were 14.
Dr. Hank Chambers (18:27): Say, "Pretty soon you're going to be in charge of your health care, or you're going to be helping your parents make decisions. And there's also going to be many, many times where you're not going to be able to see a pediatric provider, so your pediatric physical medicine rehab doctors, your therapist, your speech therapist, your occupational therapist, your orthopedic surgeon, will stop seeing you when you're 18; sometimes 21.
Dr. Hank Chambers (18:55): I've been really lucky and I hope my families think they're luckiest too, as I started an adult clinic in 1995. So I see patients their whole life. And we hired a physiatrist here in San Diego who sees adults with cerebral palsy for their whole life. My oldest patient is 87 years old.
Cynthia Frisina (19:14): That's incredible. I didn't know that.
Dr. Hank Chambers (19:18): Yeah, it's really nice. So I feel really good about doing that, but not every pediatric provider can do that, mainly because of their hospital won't let them. They have a cutoff at 21 years old, some go up to 35 years old, but at some point you have to go to an adult provider.
Dr. Hank Chambers (19:35): So we still talk to families, even with that, to make sure you have a good primary care doctor and we helped them do that. It's actually really difficult. And I know you and I have, you've been on Capitol Hill many more times than I have. I've been on Capitol Hill with you. One of the things I've talked to our legislators about, is that there's no good way to transition because of the way that healthcare dollars spent. So it's really hard for families during this time transitioning from 18 to 21 to adult care. So that's something we started talking about at a really young age, and hopefully we can carry that through.
Cynthia Frisina (20:17): That's fantastic and it's so important. I mean, my daughter now is just graduating from high school and transitioning to adulthood, and it's a huge challenge. It's one I didn't really anticipate all the considerations and there's not enough clinics like you're doing with adults.
Dr. Hank Chambers (20:35): Yeah.
Cynthia Frisina (20:37): That's for sure. Well, one question we also get a lot of is, when you are recommending to a family, an uncomfortable procedure, a procedure that either could involve pain or a long recovery, whether it be surgery or injections or some other type of procedure. How do you sort of address that aspect with them, in terms of the discomfort part of telling someone that there's going to be pain or there's going to be some unpleasant parts. How do you recommend to parents that they talk to their child about that, and how do you talk to the children about that?
Dr. Hank Chambers (21:24): That's a very important part of our care. And we have several modalities that we'd use. So for example, in my clinic, we have healing touch practitioners, including my wife. And so they help calm the child and the families; she works with all of them, just to try to get them to focus and just helps with their anxiety.
Dr. Hank Chambers (21:51): But we're also really upfront that we have a very comprehensive way to treat that. So there's some oral medications that you can take that help through their anxiety. If any of the parents have ever had a procedure like a colonoscopy or something like that, it's the same medication that we use to help calm the child down. And also, just one of the drugs that we give, not only does it calm them down, it also makes them forget that they've had that procedure.
Cynthia Frisina (22:24): Oh, that's great.
Dr. Hank Chambers (22:25): Yeah. That's a good medication. We use that when we were doing botulinum toxin injections in the clinic, so we're not even in the operating room. So that's very helpful. For children that, that's not even enough for them, we have a same day procedure room where they get a little whiff or some gas, or maybe even an IV medication to once again, decrease their anxiety and decrease their pain a little bit. Obviously, if you do it in a clinic, it doesn't take very long. If you have to go to a same day surgery center, it's a commitment of three or four hours.
Cynthia Frisina (23:01): I had a question just in this pandemic, sort of new order of the world, with not obviously with surgeries, but with office appointments and things like that, do you do telehealth appointments or anything like that if a family isn't able to come into your office or those kinds of considerations?
Dr. Hank Chambers (23:25): Yeah. That's a really interesting question. It's something that we've been wanting to do for years and, "Oh, it's always on the back burner. We can't do this because we don't have the equipment. We don't have this." And all of a sudden, it became a mandate or we had to do it, it was very important. And all of a sudden, we turned on a switch, and I would say our physical medicine rehab doctors do 90% of their appointments by telehealth now.
Cynthia Frisina (23:51): Wow. It seems like it's a trend.
Dr. Hank Chambers (23:55): I hope it will stay because it's so nice, especially for patients, for families with cerebral palsy. Many times they have equipment they have to bring our wheelchairs, or they have to drive hundreds of miles to come for an appointment for 20 minutes. And all this stuff can be done by telemedicine and it's been very successful; I would say more so for children with cerebral palsy and other disabilities than other problems.
Dr. Hank Chambers (24:24): Many of the things I have to do in orthopedics, I have to be able to examine their, say if they have a knee injury, if they have torn their ACL or something, I have to actually put my hands on and do maneuvers to see if they have a tear. And for kids with cerebral palsy, we can watch them walk. The parents are getting better and using their iPhones, and we're able to get almost as much information. And then if we have to see the child once a year instead of every three months, it makes it so much easier for the parents. So telemedicine has revolutionized the field of rehabilitation medicine. [crosstalk 00:25:04]
Cynthia Frisina (25:04): Yeah, I hope it stays.
Dr. Hank Chambers (25:06): I think it's going to stay.
Cynthia Frisina (25:08): That would be great. Well, I have one last question for you and that is, any general words of encouragement or positivity that you might re-advice to give to parents or caregivers who are navigating this journey? Whether they're at the early stage of just receiving the diagnosis or those few early years, or they're later on in their journey where they might have a teen with CP transitioning to adulthood. What last advice or just general thoughts might you be able to share with them?
Dr. Hank Chambers (25:44): It really depends on the stage that your child is. So when they're three years old, a lot of times you're just concerned that, "Is my child going to walk? Are they going to have friends? Are they going to fit in, in school? What's going to happen in their life?" And just realize that's normal for your child who doesn't have a disability; you're kind of thinking the same things.
Dr. Hank Chambers (26:09): And just realize that there are going to be highs and lows in your life. There's going to be some things when your child thanks you, and obviously you love your child and they love you back. Those moments happen your whole life. And realize that there's a team of people there to help you. Your family; number one, your spouse, your parents, your other children, that there's going to be a support group for you, that eventually you're going to come out of that procedure, and realizing that the people that you're working with, the physicians, the therapists, the nurses, are there to help you help your child achieve their maximum potential. And if they're not, then you need to get a different doctor, a different group, because that should be our goal for all of our children.
Dr. Hank Chambers (27:08): And the things that we've gone through; my son's had 27 surgeries. We talked about those levels, he's a level four patient. He can drive his electric wheelchair, but we have to feed him, so he's kind of in that level, but we've had the tough times with getting the spine surgery and getting the Baclofen pump and all of those things. But then we see all, the fact that if he hadn't had all those procedures, he wouldn't be where he is today. He's in a wheelchair dance class. My son, by the way, is 37 years old.
Dr. Hank Chambers (27:51): So he's in a wheelchair dance class, he's in a drumming class, he goes to a comedy club, he has a lot of friends. And you're always afraid when your child is a teenager, that once they get out of school, they're not going to have any friends and I think we found that that's not true. It's still difficult, but he's living his life to his full potential and that's all we can ask for any of our children. And just know that the team of doctors, nurses, and therapists that you're working with, that we all should have the same goal.
Cynthia Frisina (28:27): That's incredible Dr. Chambers, I can't thank you enough for being our guest today, because I think your perspective, both as a clinician, a surgeon and a father is really unique and our families are definitely going to be so appreciative of hearing what you have to say.
Cynthia Frisina (28:45): We will be posting our podcast on CP Resource and you'll be able to access it, all of our families in our community will be able to access this on many different platforms, as well as social media. And we look forward to all of your comments on our Facebook page, our Instagram page, and let us know what you think.
Cynthia Frisina (29:08): Thank you, Dr. Chambers, and we look forward to next time. Our What to Expect Podcast series is made possible in part by the support of Ipsen Biopharmaceuticals.
Jason Benetti (29:22): 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.
**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 professional for any medical questions.