Melanie Cole (Host): Welcome. Today, we’re talking about cerebral palsy care at Shriners Hospitals for Children in Portland. And my guest is Dr. Jeremy Bauer. He’s a Pediatric Orthopedic Surgeon at Shriners Hospitals for Children in Portland. Dr. Bauer, such a pleasure to have you back on with us today. Explain a little bit about cerebral palsy and how it affects the brain.
Jeremy Bauer, M.D. (Guest): Cerebral palsy, it’s a diagnosis that affects a lot of children. And it’s an injury that occurs in an undeveloped brain. So, a child that is yet to be born, or just early in their afterbirth and it’s an injury that occurs to the brain. It’s not a progressive problem, so it doesn’t – the brain injury doesn’t worsen, but it happens once and then we see a lot of problems that come from it, from both how they walk and how they think and move and a whole other set of issues that come along with it. So, while I’m an orthopedic surgeon, and we deal with orthopedic nature of things; there’s a whole lot of other aspects of it that require a lot of care.
Host: Well let’s talk about some of those Dr. Bauer. How does it, depending on the severity, affect the body of the child with CP?
Dr. Bauer: You know it ranges from really mild to where maybe the only difference that I would see as the child is walking down the hallway in my clinic and maybe it just bothers them just a little bit how they walk and have completely normal speech, intelligence, communication abilities and really very mild to quite severe where children are – can only get around by wheelchair, some of them can’t motorize it themselves and then in the really far severe end, difficulties with their digestion, with seizure disorders, with feeding issues and then along with that, comes a whole host of things. Lack of communication, issues with their feeding and so it runs a broad spectrum of issues that come up.
Host: Do we know what causes it?
Dr. Bauer: A lot of different things can happen. So, they are all lumped in together into the same diagnosis. And it’s generally an injury that occurs to the fetal or infant brain. So, while some of this happens right at birth, a lot of this happens from children that are born premature and the brain just can’t take an insult that occurs from that, whether it’s lack of oxygen or a small stroke that was blood flow to a section of the brain. So, there’s a lot of different causes and that’s why we see quite a bit of different manifestations of what it looks like.
Host: While we are talking about what it looks like, what are some signs to look for when a parent thinks their child might have cerebral palsy? When do they find this out? Is it something that you can see in utero? Do you find out right when the child is born? Or is it a little while after when you start to notice maybe some limb deficiencies or other aspects of this particular condition?
Dr. Bauer: Yeah, great question. So, some of the children that are really severely involved and have fairly profound insult to the brain; we know pretty early. They were born prematurely, maybe they are in the ICU for a long time and so we have a lot of concern for them. And other kids, we see that maybe they just didn’t meet their milestones. So, their pediatrician is being careful to look at all their milestones and are they rolling on time, are they sitting on time, are they walking on time and those are the particularly for the children that are less severely involved, are where we pick it up. So, they are not meeting their milestones like we would expect them to and then some children we don’t even know until they are past walking age but they are still just maybe not quite keeping up with their peers or they are not using their hands the same way as they would – another child would and so then with a more mild children, sometimes we pick it up a little bit later.
Host: Because there’s no cure, Dr. Bauer, why is it important for early detection and intervention? Tell us a little bit about how that works once a parent finds this out.
Dr. Bauer: Just like you said, early intervention is important. So, we want to find out what areas we can help these children become more mobile, to be able to do the best that they can. We want to make these children the best that they can be. And we want to avoid problems. And so some of the children need early screening for diseases that are specific to children with cerebral palsy. So, we start seeing them as early as one and a half and two having hip problems already because they are not standing and walking as well as normal. So, we want to find those children early and start doing some of the preventative measures for them.
The important thing just for the families is that there is a lot of care that goes into a child that has these needs and so an early diagnosis allows practically more resources available to them. So, the earlier they have the diagnosis, they can get more school based support, more insurance based support and so, they can help get all the things they need for their child to become the best they can be.
Host: What a great point and so then while we are on that topic, tell us some of the challenges for parents caring for a child with CP as they grow and tell us about some of the support services and devices that you provide patients and I’m going to add to this question Dr. Bauer, what are some of the more important aspects of the medical homecare that are important for a child with cerebral palsy such as vaccines and well visits and good nutrition and school intervention. Speak about some of the challenges for parents and your ability to help them with support services.
Dr. Bauer: To answer the support for the families; it’s really difficult. Gripping with the diagnosis, no one walked in expecting this, there’s a genetic component to it but we generally don’t expect a child to have cerebral palsy. So, it’s a big shock and so finding support is really important for them just to deal with the whole chock of this diagnosis and what life’s going to be like and all along the way, they are going to need help. Gaining resources, finding things out, how to help integrate their child into school and so there’s a lot of resources there and our social workers are fantastic at helping key them into support groups, how to get them the resources they need along with our managers to help them do that.
And these children need lots of devices like you said. So, children get into gait trainers, which help them start to walk, they need lots of physical therapy, they need lots of speech therapy to help them communicate, help them with their feeding, help them with their activities of daily living, their care, their toileting; all these things that our occupational therapists, speech therapists, and physical therapists help with. And it’s a lot for any family to navigate to do all that. And so one of the things that we really do well here is having all those support services that will come around and help the parent as they are feeling pretty overwhelmed and it’s a great thing to be able to look at the family and just say heh, we’ve got all of this stuff here. So, we’re going to help you with your wheelchair, we are going to help you with your toileting. We are going to help you with your augmentative communication. And it’s all in one place and it’s such a great service for the family. They don’t have to travel around to get it. it’s all right here.
Host: Tell us a little bit about your team Dr. Bauer. What type of providers are involved? You’ve mentioned a few. Expand on that just a little bit. Does it require management of several aspects of multidisciplinary care?
Dr. Bauer: We have a neurologist that helps with the management of their tight muscles and their tone and we have a nutritionist to help with their nutrition. We have a speech therapist who helps with both their swallowing difficulties and their speech issues. Our occupational therapist will work with their sitting issues, their splinting for their arms where they get contracted. Our therapists are working with their standing frames and their chairs and their gait trainers, all those support services are coming around and then for our children that are a little less involved; we have a gait analysis team and so we have a physical therapist that help run our motion analysis that helps really clarify what deviations or what differences these children are having when they are walking and how we can make them better.
And then, we use it after we’ve done intervention to see did, we achieve our goal? Did we make them better in these ways.
Host: Tell us a little bit about why the Portland Shriners Hospital is the premiere destination for children with CP and what’s something you’d like to tell parents of a child who was recently diagnosed and hoe you can help them?
Dr. Bauer: For that new parent, it’s scary and coming here is a great place. It’s friendly, families like that. People are all really used to seeing children like this. Sometimes it is just difficult to go even to a normal clinic and these families are struggling with the differences and the accessibility and coming into the hospital, they will recognize there is just a difference. There’s space for their children. There’s friendly faces who people are used to seeing and treating and helping these children. And the reason to come here is that we have all those services in one place. We have our orthotics department in the same place. Their physical therapy in the same place. Their clinic is in the same place. If they happen to need surgery, it’s in the same place. And so, all of that care is provided in one place and just makes it so much easier for the family.
Host: Thank you so much Dr. Bauer. You are a great guest as always. Thank you again for joining us. And that wraps up this episode with Shriners Hospitals for Children in Portland. Head on over to our website at wwwportlandshrinershospital.org for more information and to get connected with one of our providers. If you found this podcast as informative and interesting as I did, please share. Share with your friends and family. Share on social media and be sure to check out all the other fascinating podcasts in our library. Until next time, I’m Melanie Cole.
