The most important priority is communication
The goal is try to maximize what your child is capable of with our multidisciplinary approach of looking at cognitive skills, self-functioning skills, and ambulatory skills. We tend to be pretty aggressive in terms of trying to maximize function. Most parents first want to know when their kid is going to walk. On the actual order of priorities, probably the most important priority is communication first. And if the child isn’t capable of verbal communication, then we try to use other modalities; be it sign, computer enhanced communication, using switches to make choices. Second, actually, is self-care and activities of daily living. Then third on that list is mobility and ambulation. So we try to orient the parents to the goals of priorities and that walking is actually sort of a little bit lower on the list. As part of the evaluation, we first make sure that the child actually has cerebral palsy because some disease entities that are referred into our clinic aren’t CP. The difference is that CP is a non-progressive disorder. It’s an injury to the brain often involved in the low motor cortex.
Brian Snyder, MD, PhD, Orthopedic Surgeon
Goals
It is so exciting to see a child make progress after orthopedic surgery. I have been here for many years, but I never cease to become teary when I see a patient up walking after several postoperative visits, knowing what has gone on the past weeks and months (physical therapy, casting, bracing). We see progress of many sorts, from small to big gains. Not all of our patients are ambulatory. A patient’s posture and comfort in a wheelchair will be markedly improved after a spinal fusion for severe scoliosis. Parents have commented to me that their son or daughter improves in other ways after such a surgery (for example, improved appetite and breathing). Children might need hip surgery for dislocation. Not everyone requires surgery. But care is taken to do all that can be done to maximize an individual’s potential in a variety of ways.
Carol Nolan, RN, BSN, Nurse
Difficult concepts
I think in all cases parents want to know if their child’s ever going to get better. It’s a difficult concept for parents to understand that their children will always have cerebral palsy. It’s a lifelong problem. And while there is no progression per se of the disease–in other words, you have your brain injury and that’s what you have, the things that we can focus on are training other parts of the brain to take over function so that there can be some improvement in functionality. Parents are always looking for a cure. Parents are always looking that this next procedure or next operation somehow will make their kid normal. When I have discussions with these parents, I’m always trying to explain that I’m working at the muscle or bone or tendon level pretty remote from where the actual problem is. I can use physics to my advantage to help improve some functionality, but at the end of the day your child is still going to have cerebral palsy. I can’t really fix that problem and parents are always hopeful. They always have expectation that there’s going to be a miracle. It’s understandable anybody who has a chronic disease somehow hopes they get better.
Brian Snyder, MD, PhD, Orthopedic Surgeon
Making decisions
I think that very often, families want to go in a step wise manner with procedures and treatments. And that makes sense, to start with small, least invasive things first starting with things as basic as stretching on a daily basis. Over time if certain activities become more difficult, then that is a point at which we make medical recommendations. Often times, when families and kids are ready for those interventions it is because it is harder for the child to do something, like to fit into a shoe or to walk flat, or to sit upright in a stable position. So when things become more difficult, I think everyone opens up to the options on the table and considers doing something that’s more invasive or aggressive.
Laurie Glader, MD, Pediatrician, Cerebral Palsy Program
A risk benefit ratio
In all cases, we come up with a risk benefit ratio to look at the child’s life expectancy. At the end of the day, is this going to improve the child’s survivability? Next then would be dealing with pain because you’re often next looking at the quality of life issues. Within quality of life, probably pain is most important in the parents’ eyes; that their child is not in pain. The second thing would be to improve functionality. In an ideal sense, we’d love to improve functionality for the child in terms of what their capabilities are. Now, the improved functionality should be patient focused, but I have no problem with also making it caretaker focused. So some of the things that we do may not necessarily allow the child to function so much better, but facilitates the life of the caretaker. So one of the other attributes of spine fusion for example, is that there is less drooling. While it is probably somewhat annoying for the child, it’s probably hard for the caretaking to keep having to clean the child or to change the little bibs to control that. That’s something that orthopedic surgeons wouldn’t necessarily think about measuring as a function, but yet in my discussion with parents something as simple as improving control of secretions really helps.
Brian Snyder, MD, PhD, Orthopedic Surgeon
Getting down to the child’s level
I reiterate to staff the importance of talking to all patients, regardless of that person’s cognitive abilities. One may not know a child’s capabilities on a brief encounter. But talking to the child, saying hello, commenting on a stuffed animal or pretty dress, is crucial. I ask staff to think about how they would feel if they were someone with a brilliant mind but unable to communicate, and people walked by them and talked not to them but to someone taking care of them. Parents will appreciate the respect given to their children. A story I often tell is about a girl who never talked to me for a long time. I would go out to the waiting room and say hello, ask how she was, comment on how she looked that day. She sat in her wheelchair and smiled. I saw the light in her eyes but did not know how much she comprehended. One day, I again asked her how she was. And her reply: “I’m fine. How about yourself?” And now she chats with all of us, comfortable during her clinic visits. She was holding court a few weeks ago in the cast room, as casts were being applied to her hands after Botox. I asked her how she liked the Locomat program she was participating in. Her reply: “Not now. I’m busy. Maybe later.” We all smiled.
Carol Nolan, RN, BSN, Nurse
Validating families
It’s a true statement: that in everybody I’ve ever known with cerebral palsy that had normal intelligence, said that when they were little, everybody thought they were mentally retarded because they couldn’t walk or talk. People just made that assumption. A lot of times too, I think that families are really the first to pick up on the idea that there kid really is pretty bright. They notice it. I really try to validate that, and validate that families are often the best judges of that.
David Coulter, MD, Pediatric Neurologist
Providing knowledge and preparation
I think parents whose kids have CP and have been taking care of them over time become very, very savvy, and knowledgeable. Some families come in with questions on how to navigate the system. For example, if they’re having trouble getting an appointment in a certain area or that kind of logistical issue, we try to help them problem solve. Families who are newer to the diagnosis often have a lot of questions about prognosis, like “What will my child be able to do in the future?” That’s a very tough question because it’s very individual how each child progresses, and sometimes that can be a difficult to explain to families. We don’t have a crystal ball, but we try to help people to understand the range of possibilities and we can prepare to get the services in place that their child needs.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Talking with patients
I don’t have any real specific “wow” science to it, but I try to do the same approaches I do with everything else, which is to sit down with patients, answer their questions, present things in the most logical, non emotional way as possible, and help them to understand what the problem is. I think for the most part, children that have the ability to do so will get what you’re pointing out, especially if they’re having pain. I think the real problem comes when the child isn’t cognizant enough of what’s going on to really make the decision or to understand what the decision is about or why there’s any decision being made at all. For those kids, I think you talk to them as if you can get them to understand that you are there to help them, that they have a problem such as pain or something that’s simple enough that they understand why they are there, that you’re going to try to help them get back to the way they want to be.
Travis Matheney, MD, MLA, Orthopedic Surgeon
Working with schools
A pivotal function of our team is that we help families keep track of all the issues that their child may have associated with their CP. In doing that, we’re often times checking in with other clinicians, updating ourselves and the family, making sure that we are all on the same page. The child’s other clinicians look to us for advice. If surgery is coming up, are there other concerns that they should be aware of? So we work together to make the situation as safe as possible for a child. And then in regards to school, we have a lot of contact with teachers, special education teachers, therapists, and special education directors because so many of the children that we follow in the CP program do require some sort of special therapy, modified curriculum or even a specialized classroom, and may need nursing or one to one aides. It gets complicated, and families do a phenomenal job advocating for their kids. Sometimes it’s helpful for the school personnel to hear directly from a medical provider what the issues are and what the recommendations are. It becomes a very large team that extends beyond the walls of Children’s Hospital and out into the community.
Laurie Glader, MD, Pediatrician, Cerebral Palsy Program
Promoting self-care
I always do try to ask caretakers how they’re doing and see if there’s any way that they can get a little bit of time for themselves because I think that we’re all more capable if we have some amount of time to take care of our own bodies and our own spirits. So I try to encourage that, knowing that it’s challenging to make happen. A child may be absolutely dependent on a caretaker for all of their needs, so it can be hard to find that free time. I always ask if there’s any need for some support, say a couple hours in the afternoon a couple times a week. A personal care attendant might be able to provide some of that support. Some families have children who get nursing who also provide that support. What a child qualifies for in terms of receiving those resources varies, but I think that the possibilities are out there so it’s always worthwhile exploring if a family is interested.
Laurie Glader, MD, Pediatrician, Cerebral Palsy Program
Adapting to evolving issues
Cerebral palsy at 1 year of age is different from 5, 15, and 25 years of age because it is an evolving issue. The child and the family have to adapt to the needs of the moment, and those needs tend to change over time. Families need to have a resource where they can go get their questions answered. As questions come up, they should know that there is a team or a specialist that they can turn to and say, “I want to know if my kid is going to be able to walk. Will he go to college?” Or, “If I build a ramp at my house, is that tax deductible?” “How can I get the school to make sure all of my kid’s classes are on the first floor?” There are a million different questions that parents and children are going to have, and they need a way to get those answered.
David Coulter, MD, Pediatric Neurologist
Getting the right match
There are different types of communication styles that medical providers and families have. It is really important to have the right match when talking to each other. When families know their style and can say whether they just want the information and plan explained to them or whether they want to have a lot of input into preparing it, communication goes more smoothly. Providers have preferences, too. Everyone needs to be aware of what works for them. That way everyone can listen and be heard, including the children.
Susan Shanske, LICSW, Licensed Social Worker