ABOUT THIS EPISODE
Preparing yourself and your child well for medical appointments means a better experience for everyone. Our “Let’s Talk CP” podcast series continues Cerebral Palsy Foundation host, Cynthia Frisina talking with Physiatrist Dr. Lisa Thornton about cerebral palsy, spasticity and what to expect at many kinds of medical appointments. Questions include what to expect when procedures like botulinum toxin injections are recommended, how to talk with a clinician when “little ears” are listening, and much more.
This episode is made possible with the support of Ipsen Biopharmaceuticals.
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 (00:34):And I'm your host, Cynthia Frisina, 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, Catherine, has CP and is the reason I got involved in advocating for other families and for more CP research.
Cynthia Frisina (00:54):On today's episode, we're continuing with our what to expect series and talking with the wonderful doctor, Lisa Thornton, about how families and caregivers can best prepare their children for medical appointments, especially if there might be a procedure involved.
Cynthia Frisina (01:10):Dr. Lisa Thornton is the division chief for pediatric rehabilitation medicine at Sidra Hospital in Doha, Qatar. She is assistant professor of clinical pediatrics at Weill Cornell Medical College, Qatar. Previously, Dr. Thornton was medical director of pediatric and adolescent rehabilitation at La Rabida Children's Hospital and Schwab Rehabilitation Hospital in Chicago where she founded Camp Schwab, a summer camp that helps foster full inclusion of children with disabilities in various recreational and cultural activities throughout the Chicago, Illinois area.
Cynthia Frisina (01:49):You might've seen Dr. Thornton on television perhaps because she has extensive media experience and has provided health commentary on the Dr. Oz show, The Steve Harvey show, NBC's Today show, CNN, Good Morning America, World News Tonight, the CBS Morning Show and others. Additionally, Dr. Thornton has a long history of advocating for the policy needs of people with disabilities. In fact, together, we gave testimony to the U.S. Senate appropriation subcommittee on labor health and human services to secure federal funding for research into the cause, prevention and treatment of cerebral palsy.
Cynthia Frisina (02:33):Dr. Thornton, thank you so much for joining us today.
Dr. Thornton (02:38):Thanks for having me, Cindy. It's a pleasure.
Cynthia Frisina (02:41):Your background is so incredible. I could have even said more about it, but I think the main thing for families in particular is your long commitment to families of children with cerebral palsy and related disabilities and we really appreciate you taking the time to join us on this launch of our podcast series.
Dr. Thornton (03:01):You know, it's funny how when you're in medical school, you really don't know why something resonates with you. I learned about the field of physical medicine and rehabilitation, which is my specialty which is the field of medicine that cares for people with disabilities. I learned about that at medical school, and I always knew I wanted to work with children. So I found out that this is something that exists. I didn't even know about it when I entered and it just really resonated with me. And so I chose it and one of those things that I do wonder about it is I happen to have a brother with cerebral palsy and so I grew up where this was just part of my life. It was not unusual to me to have a person with a physical challenge around me. So I think that probably also informed some of my desire to do this.
Cynthia Frisina (03:57):I think that's really interesting because I think a lot of us somehow gravitate towards being involved in this, especially the nonprofit side or being able to work with families, have a family member or some sort of personal connection. But one thing I know a lot of our families are still confused about or ask a lot of questions about is what is cerebral palsy. There still is confusion around that. I wondered if you could just take a minute and explain for our community what cerebral palsy is and what the most common types are.
Dr. Thornton (04:35):Well, cerebral palsy is a disorder of movement and tone. So children have difficulty moving and they may have unusual stiffness or other issues with their muscles and joints that occurred because of something that injures the brain of either a baby while they're developing inside of mom, something that happened very close to delivery or in the first couple of years after birth. The majority of cerebral palsy happens before birth and we do not know the cause in the vast majority of cases but it occurs before birth and then the child, as they develop, is noted by the parents not to quite develop on target. So we see delays in development and this can happen anywhere from birth we can see this all the way through some children aren't diagnosed until age two or three, which we're really working on changing. We should diagnose it very early in life if possible because that's when we can get the most changes to the brain and the most opportunity to help that child develop as well as they can.
Cynthia Frisina (05:49):That's a great, that's such a great point and along those lines, if a parent or a caregiver notices that their baby or their young child is maybe not developing and hitting those milestones, how do they know when they should come and see a doctor like you? How do they know when they should make an appointment? Is a physiatrist or a pediatric rehab doctor the first kind of doctor they should make an appointment with? Or what do you recommend to families?
Dr. Thornton (06:25):So generally, most people, everyone, should have a pediatrician in their life when you have a baby. So that person should be following your baby in the first year of life. you'll see them about five or six times for immunizations. And every time you go in to see the doctor, they will ask you some questions about how your baby's developing. And so they should target very early whether your baby is not quite meeting what we call the developmental milestones. And so that's one time when the doctor may say I think you need to see a specialist because I think maybe your baby's not quite developing on target.
Dr. Thornton (07:04):Now, there are things that could happen with babies where they catch up, that it's something that you don't need to be concerned about. But I think that if parents are concerned, you bring that to the pediatrician and if the pediatrician is concerned, they should bring it to the parents' attention and it would be good to be seen by a specialist. Now oftentimes the first doctor that you are referred to is not a pediatric rehabilitation specialist. Oftentimes it's a neurologist. Some people are sent to orthopedic surgeons or developmental pediatricians.
Dr. Thornton (07:36):But hopefully if your child has cerebral palsy, you do find your way to a pediatric rehabilitation specialist because this is one of the areas that we think a lot about, really study and really pay attention to and so your child does need a specialist.
Cynthia Frisina (07:59):So if a child by the time they usually would come to see you, they probably then... Would it be accurate to say they probably have a diagnosis of CP by that point? And if so, is that the point where a parent would need to be able to put together a care team for their child? And is that something that you would help them do?
Dr. Thornton (08:25):So sometimes it depends on very much on where you are. Pediatric rehabilitation specialists are fairly rare. There aren't that many of us in the United States. And so if you live in a smaller town or a more remote area, you might not have someone like me in your community. So many times another doctor will work up your child and we'll say I'm really suspicious and then they send them, send your child to someone like me.
Dr. Thornton (08:52):But there are times when I see children who have not yet been diagnosed and so I need to do the careful work of making the diagnosis. Now, once your child does have a diagnosis of cerebral palsy, as you said Cindy, the care team is critical and one of the things that pediatric rehabilitation specialists do that is a little different than what most doctors do is we help you gather that team.
Dr. Thornton (09:20):So from the time I see the child, I'm trying to think about their future. I'm trying to predict where are we going and when do various specialists need to come in and out of the child's life. The first specialist most children will really engage with are going to be therapists, physical, occupational and speech therapist, and maybe a child development therapist in the early intervention program, which is something that is very common and it's federally mandated. So that's a program that is national and that babies who are under three are eligible for if they meet certain criteria.
Dr. Thornton (10:01):So you'll need to start usually with your rehab doctor and then your therapist and that's your core care team for your child who will really educate parents a lot on how to optimize the child's development. And then as the child grows, other specialists may be needed. Some children need an orthopedic surgeon. Some children need a neurosurgeon. Some children need a neurologist who have seizures and there are many others, but the pediatric rehab doc is kind of your core person, sort of like the conductor of your orchestra, right? Who kind of tries to keep everybody moving in sync together to do what's best for the child.
Cynthia Frisina (10:42):That's such great information for families. I think they really need to hear that and understand the value and importance of putting together a care team. Now one thing that many families of a child with CP face is dealing with spasticity, which I know that there is... We get so many questions about that and there is a lot of confusion around what spasticity really is and how to address it. Would you mind just taking a minute and telling us more about what spasticity is and how it affects the body and movement and bones with a child with CP?
Dr. Thornton (11:23):So there are various types of cerebral palsy. Cerebral palsy is a very broad term and can affect the child very minimally, say one limb, let's say just a leg can be involved. That's called monoplegia. Mono meaning one, plegia meaning weakness. So one weak limb. If both the legs of the child are involved that's called diclegia, which means two, two limbs are involved, and if all four limbs are involved we call it quadriplegia. Some people say tetraplegia, again describing the number of limbs, and still other children will have one side of the body involved. So maybe the right arm and right leg are involved. That's called hemiplegia, one side.
Dr. Thornton (12:16):So there are many different types or distribution of cerebral palsy around the body. But the most common type of problem that a child has with the cerebral palsy is called spasticity as you mentioned. And specificity is a stiffness of the joints that occurs with motion. And so one of the most common movements that people do is try to walk and so with every step, there is a quick stretch on the muscles and that quick stretch often leads to children with cerebral palsy walking with a characteristic toe to toe walking. They walk on their toes and they may have a kind of a clumsy way of walking and that clumsiness is caused by spasticity.
Dr. Thornton (13:06):So spasticity is the most common thing we see in children with CP and one of the problems that it does is that it's pulling on bones because children are growing. So the muscles have the specificity. Muscles are attached to bone. And so it pulls the bones into these not typical positions and positions that can be very... Make it even more difficult for the child to move. And so the bones and muscles are working together in all of us, but the spasticity can cause problems with the way the bones and muscles work together and, because children are growing, with the way the bones and muscles develop. And so kids can get very specific problems with their muscles and bones that may need to be addressed throughout their lives.
Cynthia Frisina (14:01):So what do you do about that? If your child is experiencing spasticity and they have an appointment with you, what is it that normally might happen at an appointment like that?
Dr. Thornton (14:17):So let me say that many parents have found clever ways to manage spasticity. Some children even have pain with their spasticity and that can be problematic. One clever mother who I met noticed that the spasticity was worse in the early morning hours when her child woke up and she started taking a warm blanket and putting it over the child ten minutes before the child got up which warmed up the muscles and made them a little more flexible and reduced her child's spasticity. So that's a very simple... That was a clever home remedy that this mother told me about and it was working for her child.
Cynthia Frisina (14:55):Smart mom.
Dr. Thornton (14:56):I tell you parents they solve a lot of the problems for us. They bring it to us and then we share it. Right?
Cynthia Frisina (15:07):That's awesome.
Dr. Thornton (15:11):So that's the simpler end of spasticity and stretching is a great way to get rid of spasticity. Probably, one of the most common kinds of spasticity that people are familiar with is what we would call Charlie horse. The pain you have when that muscle just tightens down is kind of like spasticity. So stretching can help a lot and kids with CP, every child with CP, should be on a stretching program at home that they do at least twice a day until of course they're a teenager who never seems to do it.
Cynthia Frisina (15:44):I know that. That's for sure.
Dr. Thornton (15:55):But they should. Now when they come to see us, if we have tried the simple things and the very holistic things that can work, we may try medication, oral medication, and so pills or liquid and those kinds of things for some children can be very effective. But for many children, they are not effective enough. And so we move to things like bracing. So bracing the muscles in sort of like a plastic brace around the foot can be helpful in helping children walk better and reducing some of the spasticity.
Dr. Thornton (16:38):If that doesn't work, then we move on to sort of more high tech options. One of the most common things that most people have heard of at this point is a medication called botulinum toxin which actually is used widely for children with cerebral palsy. And this is a medication that relaxes muscles, as I said, so in muscles that are stiff, we can inject it using a needle and it will relax those muscles.
Cynthia Frisina (17:06):So let me ask a question then. So if you recommend a procedure such as botulinum toxin injections for a child, what questions would you recommend a parent ask of you once that recommendation is made such as pros and cons, frequency, expected outcome, et cetera?
Dr. Thornton (17:32):So I see you're a mom and so you've probably thought about this.
Cynthia Frisina (17:36):These are the questions that I probably would have asked.
Dr. Thornton (17:42):Yes. So any time, any time, any physician, not just me as a rehab doctor, but any physician makes a recommendation, your questions are the exact appropriate ones. What are the benefits of this, the pros? What can I expect to be the outcome of this? What are the cons? What are the negative things? Are there side effects? What are the common side effects? How long does the medication take to take effect. In the case of botulinum toxin, it can be a few weeks. How long does it last? Does it last forever? Is this something we'll need to do again? And all of those questions need to be addressed before parents decide whether this is something that they want to do.
Cynthia Frisina (18:33):So here's a mom question for you, another one, or parent. So let's say that I've made the decision that I'm going to move forward with botulinum toxin injections for my child. What should I expect at that appointment and how do I best prepare my child for that kind of appointment?
Dr. Thornton (18:55):So botulinum toxin is injected into the muscle with a needle, as I mentioned. So it is a painful procedure and, therefore, parents themselves need to be ready for their child to be poked a few times. So there are topical numbing medications that can be used because many people say the most painful part of any injection is the penetration of the skin. So anything that numbs the skin will decrease the pain of an injection. But I'm still putting a needle all the way into the muscle so it doesn't do anything to numb that muscle. Some practices will offer sedation. So they may use a kind of a quick gas right in the office. They may do a little gas for the child that just makes them very drowsy for just a few seconds while they do those injections. And other practices may take the child to a procedure suite or operating room. It varies widely and that is something that you really want to have a discussion about.
Dr. Thornton (20:01):That brings us to what to say to your child. And this varies widely by family as well, right? I mean I have three children and they are three very different people and I would present this differently to all three. I mean for some kids you want to tell them at home the day before, hey, tomorrow this is what's going to happen. And for other kids, you kind of want to surprise them three minutes before the procedure and let them know we're going to do this, it's going to hurt a little bit and you're going to try to hold still, whatever. Other kids need a bribe. If you do this, I'll take you to this place after we get done. I mean parents know their children but one of the things that I think that in recent years I've started to really be aware of is that little ears are listening in the exam room when we're discussing whether we want to even do botulinum toxin.
Dr. Thornton (21:02):So you might have an eight year old who's sitting there and they're old enough to completely understand the conversation. So I have actually now in my practice, I generally will ask parents, I'll say, I want to talk to you about what I think our next step should be. Do you want the child to wait in the waiting room with my nurse or with one of our staff members and color while you and I talk about this? Because then the parents have control over how that procedure gets delivered to the child, how the information gets delivered instead of listening to me delivering the information to their parents.
Cynthia Frisina (21:44):Oh, that's such a great perspective. Is there a certain age of child where you decide, or maybe it's not age, maybe it's a developmental stage, where you decide that you should start having that conversation directly with the child rather than the parent or is it just dependent on that family dynamic?
Dr. Thornton (22:10):Well some of it is dependent on the family dynamic and you get a sense for that when you're with the family, but I would say usually if the child is over 10, 11, 12, 13, they are beginning to participate in the care of their condition and therefore sometimes you want them to be there to hear what the recommendation is. Now, again, this can be parental dependent as well. And so I would usually turn to the parent and say I want to talk about this. Do you think that your child wants to stay for this discussion? And sometimes the child says I want to stay and sometimes the child is completely unconcerned and lets the parent make the decision. So it's very family dependent.
Dr. Thornton (23:04):But the other thing is I want to encourage parents to empower their children as you were just saying. Most children with cerebral palsy will grow up and be able to live an independent life. And so we do want to begin to help them become health literate about their condition that they're going to live with and take care of and so they need to begin at a certain age in their early adolescence to listen in the doctor's office and actually have a conversation with the doctor about how things are going. I think that's very important and the adults with cerebral who I see who seem to have been most able to really become fully adult and managing things for themselves had parents who encourage that kind of independence.
Cynthia Frisina (23:57):Oh, that's such great advice because I think many times families can be intimidated in a healthcare situation and may not ask or advocate for the questions or for their child to become an advocate but when they do it really makes such a huge difference just for families to hear that from you I think will be incredibly helpful to them. So thank you for that. And speaking of spasticity management, when the child, for example if they're stretching and maybe they're wearing orthotics or braces and having botulinum toxin injections, how do you recommend parents and families think about that spasticity management from childhood through young adulthood and the teen years. As you noted, teen years become a different challenge in terms of independence and things like that. How should families think about that? Because the spasticity doesn't go away.
Dr. Thornton (25:02):Yeah. Yeah. So first of all, I think it's very important to have a physician who you can actually ask that question. Like this isn't going to go away, my child's four right now, what are we anticipating for the future? Because we, as rehabilitation physicians, know that for some children, we know around eight or nine they may need orthopedic surgery to correct some of the deformity that the spasticity has caused. We know that daily twice a day stretching is so important for children with cerebral palsy for spasticity management. We know that trying to keep the muscles long and strong, so we want them to stretch and we want them involved in athletic activity if they're able. Yes.
Cynthia Frisina (25:55):Yes. That's right.
Dr. Thornton (25:55):So long and strong muscles are very important.
Cynthia Frisina (26:07):Oh, that's so helpful I think for families to hear. I have two more questions for you. One of them is, are there any new treatments or protocols on the horizon in CP care that you see that may improve outcomes or function or quality of life? I know that's one thing that families are always looking for. Is there anything new that they should be considering for their child or a way that they should be doing something differently that might improve quality of life?
Dr. Thornton (26:43):So I think we've talked about some of it but to put it together, the first and one of the most exciting things that's happened in cerebral palsy in the last 10 years is early diagnosis. Children with cerebral palsy can be accurately diagnosed, many, not all but many, in the first four months of life. So if the child has a rocky start.
Cynthia Frisina (27:06):Wow.
Dr. Thornton (27:06):Yeah. It's pretty amazing.
Cynthia Frisina (27:08):That's a big change. Right. A big improvement.
Dr. Thornton (27:12):Yeah. And some doctors who don't think about cerebral palsy a lot will tell a parent, oh, we can't diagnose that until age two. Well that is wrong. We can diagnose cerebral palsy in many children very young and usually if the child has had a rocky start in many neonatal intensive care units around the country there are early diagnosis teams and this is done with an examination, a completely pain free examination of the child, and then usually an MRI scan of the brain. So with those two things you can very accurately diagnose early.
Dr. Thornton (27:53):And what's exciting about that and very important about that is that there are emerging therapies that can help the brain to reshape itself as well as possible around some of the damage of the brain that has caused CP. Now we are not curing cerebral palsy. It is very important to say that. We are not curing. But what we are able to do is say that if the child does not get the care and treatment early versus a child that did get the care and treatment early, we see better outcomes in early care and treatment children. So we want to get children diagnosed early so that parents can optimize the child's outcome.
Cynthia Frisina (28:35):Last question for you. You're an esteemed clinician, you're an advocate and you're a mom. What general words of encouragement can you give other parents and caregivers who are navigating this CP journey? It might be families who are receiving the diagnosis, it's new to them, or they may be somewhere in their journey with an older child or teen or even young adult. Do you have any words of wisdom or encouragement that you might like to share?
Dr. Thornton (29:12):So I think the first thing is to say that this is really hard. It is not easy to get this diagnosis. No parent, no pregnant mom when they dream of their child pictures their child with cerebral palsy. I encourage parents to reach out to other parents. That's really important. Another thing is to remember your child's a kid. It's so tempting to focus on the therapy and the places and the positioning and making everything so clinical because you have in your mind that if I miss something, if I don't do all these things that I am not being a good mom to this child who has a disability. That is just not true. All of us have a bandwidth. We have a certain amount of hours in the day and a certain amount of energy. And there's no perfection to this. Your child needs to have a childhood. They need to have fun. And, in fact, children who have fun doing therapy will have better improvements than children who find it to be drudgery. That's how the brain works. The brain wants to have fun and children's brains want to have fun more than anybody else's brain. So we have to make it fun and we can't make it drudgery and if your kid needs a break from therapy, take the break.
Dr. Thornton (30:43):Another thought is that I see parents who are very focused on walking and I understand that. I know it's a very important milestone, but about two out of 10 children with cerebral palsy will not walk and I have talked to adults with cerebral palsy whose parents spent years and years and years trying to get them to walk and at a certain point the child was like just let me get on with my life and do all the other wonderful things that I can do.
Dr. Thornton (31:29):And I think we want to be sure with all of our children, not just children with CP, to focus on their strengths. What is incredibly wonderful and uniquely marvelous about your child who happens to have cerebral palsy but who also has these other amazing things about them and really celebrate those and let your child know how much you value the person they are, not the person they're not. Because all of our children have really amazing things about them. So I just want to encourage parents to remember that.
Cynthia Frisina (32:05):Oh, that's such great advice. And thank you so much, Dr. Thornton, for being with us today, especially as we launch this whole new podcast series. We want to make your life better and your family and have a better outcome for your loved ones.
Cynthia Frisina (32:20):Our What to Expect podcast series is made possible in part by the support of Ipsen Biopharmaceuticals.
Jason Benetti (32:27):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.