In our conversation Dr. Feyma and I discuss how he decided to focus on Neurology, what led to his interest treating complex pediatric issues, And we discuss the great community of families that has developed around Gillette Children’s hospital.

Speaker 1:  Bringing you conversations with leaders within the operating room and healthcare community, this is Scrubbing In.

Todd Slosser:  Hello and welcome to Scrubbing In, a podcast powered by Specialty Care. I’m Todd Slosser, and today, my guest is Dr. Tim Feyma, the medical director for neurology at Gillette Children’s Hospital in St. Paul. In our conversation, Dr. Feyma and I discussed how he decided to focus on neurology, what led to his interest in treating complex pediatric issues, and we also discuss the great community of families that has developed around Gillette Children’s Hospital. Enjoy the conversation.

Thanks for joining us here on Scrubbing In. I’m Todd Slosser, and joining me today is Dr. Feyma, the medical director for neurology at Gillette Children’s Hospital here in St. Paul, I guess is where you’d say. Correct? So let me get right into it with this question. So what was it that drew you to neurology as a field?

Dr. Tim Feyma:  For me, child psychiatry seemed a very interesting way to help people live better, more well-adjusted lives.

Todd Slosser:  Right.

Dr. Tim Feyma:  As I began to get more experienced with it, it became clear that it’s a discipline that held my interest, but neurology and some of the organic disease of the brain, more epilepsy, learning delay, some of the genetic issues that neurology looks at is well was more interesting to me.

Todd Slosser:  Yeah. You treat, here at Gillette Children’s, sort of complex medical issues. It’s not just scraped knees and bumps and bruises. So I’d like to talk a little bit about what it takes to get that classification of complex medical issues. What classifies it as complex?

Dr. Tim Feyma:  Yeah. I think as a pediatric physician, there are some who want to see ear infections. I’m someone who likes to ruminate a bit so I like seeing the neurologically complicated patients. What that means is these are kids where kids may have epilepsy and seizures, but a lot of our kids also have sleep issues and developmental issues and other autonomic-related body issues that are related to the brain as well. I like the really complicated kids that make me think a lot.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  I’m happy to work in a place that actually gives me time to see them.

Todd Slosser:  Yeah. Well I’d imagine because it’s sort of complex and perhaps even compound issues because one thing can lead to another thing, right?

Dr. Tim Feyma:  Yeah.

Todd Slosser:  Or one issue can lead to another issue, that it takes a while to maybe figure out what is the starting issue, what caused all of this to happen.

Dr. Tim Feyma: Right.

Todd Slosser:  Because I’d imagine you see — and correct me if I’m wrong obviously — one thing and not realize that it’s caused by a few other things. So if you treat that one thing, that may sort of unveil more of what the root cause is. Is that sort of the workflow?

Dr. Tim Feyma:  I think that’s a great way of putting it. I think that many of the children that we see, it’s more about sort of unwrapping what the root cause is. People don’t always know how to ask the question about what the root cause is. They just know there’s something unique so they come to see us.

Todd Slosser:  Sure.

Dr. Tim Feyma:  It’s really detailed and onerous kind of digging into what the issue is and where the root cause is. Yes, you could definitely … It’s kind of the Russian nesting doll of kind of chasing things back to where’s the actual kernel that we can kind of attack and fix here.

Todd Slosser:  Yeah. You mentioned that you guys sort of focus on more unique things. I noticed a syndrome that I’d never seen before on the website at Gillette was Rett syndrome. Can you talk a little bit about what that is specifically?

Dr. Tim Feyma:  Yeah. So Rett syndrome is a genetic condition. It’s on the X chromosome. Females have XX, males have XY.

Todd Slosser:  Right. Females are more likely to have Rett syndrome.

Dr. Tim Feyma:  Correct.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  I’ve been lucky enough to do some research here on that syndrome. It’s quite variable like anything. Most people are familiar with things like Downs syndrome where-

Todd Slosser:  Sure.

Dr. Tim Feyma:   everybody knows somebody with Downs syndrome where some are very high-functioning and go to college, some are very low-functioning and will never drive a car, go to college.

Todd Slosser:  Sure.

Dr. Tim Feyma:  Rett syndrome is probably a little bit more, the girls are more impacted, but they tend to have complicated medical issues including epilepsy, sleep issues, movement disorder issues. I just saw one yesterday, one our rural clinics down south. She was one of the more impacted girls. Already at age three, she’s in a wheelchair and needs a tube to feed. We do see teenage girls who are walking and talking-

Todd Slosser:  Yeah.

Dr. Tim Feyma:   and do quite a bit.

Todd Slosser:   Since it is like Downs and it’s sort of one of those things that stays with you for the entirety of your life, what are the treatments? What can you do to help someone in those situations? Is it more about quality of life?

Dr. Tim Feyma:  In some ways, I think that’s a good way to put it. In many ways, all I do is sort of palliative in a way because a lot of things I can’t fix, right?

Todd Slosser:   Right.

Dr. Tim Feyma: So palliative is not a weak point. There’s actually a lot of value in palliation-

Todd Slosser:  Sure.

Dr. Tim Feyma:  and keeping kids in school and keeping kids out of the ER.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  But now is a very revolutionary time as far as a lot of the rare diseases like Rett syndrome because there is more research being paid attention to there. I can go very deep on this, but another example would be actually spinal muscular atrophy right now is a condition that a lot of child neurologists see as well. Kids get progressively weak and in the severe cases, pass away in infancy or teenage years. Now, there’s actually a drug to treat it. We did some of the research here with that. It was an amazing trial because by the end, some of these kids were very weak and couldn’t even sit up. By the end of the trial with treatments, they were starting to kick us and starting to fight us and it was amazing.

Todd Slosser: Yeah.

Dr. Tim Feyma:  I think Rett is next up on the docket for a lot of innovation. There’s gene therapy coming down the pipe. There’s other specific compounds that treat the root issue and not palliate.

Todd Slosser:  To do gene therapy, is that using technologies like CRISPR to actually go in there and change the code?

Dr. Tim Feyma:  So it’s complicated right now.

Todd Slosser:  Sure.

Dr. Tim Feyma:  I think CRISPR is a very hot topic.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  I think it’s still in its nascency as far as utility. I think some of the gene therapy right now is putting the genetic material that makes the deficient protein-

Todd Slosser:  Right.

Dr. Tim Feyma: in, but it may not be like CRISPR style like [inaudible 00:05:34] is inserted.

Todd Slosser: Sure.

Dr. Tim Feyma:  Someone puts little pieces of DNA that just kind of float in the cells and then make the right protein. The DNA makes the protein. The protein carries out the function. The body is a very complicated mix of a lot of microscopic interactions and reactions that we just-

Todd Slosser:  Yeah. Yeah, I think most people don’t realize how difficult it is to just make a normal person. The events that have to happen perfectly to make someone who’s healthy.

Dr. Tim Feyma: Yeah. Development isn’t this gene is needed this time, this gene is needed this time. It’s more like kind of chords being played on a piano. You need this kind of set of 16 playing at this time or 16 playing at this time in a sequence.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  It’s complicated.

Todd Slosser:  Yeah. So you mentioned that Gillette actually does some research as well. What was it you said you guys were, you had researched and did that trial on? What was that specifically for?

Dr. Tim Feyma:  The trial I mentioned was spinal muscular atrophy. We do some research. I can speak to the neurologic perspective of research.

Todd Slosser:  Sure.

Dr. Tim Feyma:  We do more than I’m probably aware of.

Todd Slosser: Sure.

Dr. Tim Feyma:  But we will do research into Rett syndrome, spinal muscular atrophy. We have a lot of research going on with movement disorders.

Todd Slosser:   I did notice that you have the gait and sort of movement center here. I’d imagine just from the name as to either help people or diagnose people who have walking issues.

Dr. Tim Feyma:  We have a truly sensational gait lab which for a lot of our children we see with cerebral palsy and move uniquely, it analyzes them and what it does is it proactively allows our surgeons to plan interventions. So they don’t just operate blindly. They operate to know kind of where the tight muscles are, kind of what surgical interventions might guide optimal surgery-

Todd Slosser:  So is it-

Dr. Tim Feyma:   and outcomes.

Todd Slosser:   Forgive me because I haven’t seen the center yet, but is it you just watch them walk and based upon how they walk and how they take their steps, their gait if you will, you can analyze all of that and then it tells the surgeon exactly what they need to know to go in and what they need to fix?

Dr. Tim Feyma:  It’s even more complicated than that because we have motion-capture software. There’s-

Todd Slosser:   Oh, wow.

Dr. Tim Feyma:  points they put on the body. They actually put sensors on the skin that measure muscle activation. The floor itself is pressure-sensitive so it actually looks at their gait pattern. It’s a very science-based way to look at gait and analyze it and break it down with the hopes that it yields a child that can keep their walking.

Todd Slosser:   Yeah. That’s to help people with cerebral palsy obviously, but do you use it for scoliosis or anything that can also … Because the spine can kind of impact walking.

Dr. Tim Feyma:  The fascinating thing about our gait lab is it looks at the whole patient. We do use it for movement disorder clinic too. So that’s more focused on the upper extremities.

Todd Slosser:   Sure.

Dr. Tim Feyma:  care about that, but they care more about the gait and everything dynamically. We will do things like have kids pick up small objects like raisins and things like that. We have a whole protocol that we analyze that because the gait lab helps us overall kind of plan interventions, but more importantly know if what we did works too because we do follow up and make sure it works.

Todd Slosser:  Yeah, I was going to ask that. So when someone’s postsurgery, you take them back to the gait lab and see how they’re walking now and maybe have to go back in and do more work or maybe you decide that that’s the best we can do or is that sort of … So it’s used in that post-

Dr. Tim Feyma: Kind of used pre and post, and the challenging thing with cerebral palsy is that it can change as kids grow. When kids hit puberty and grow like a foot-

Todd Slosser: Yeah.

Dr. Tim Feyma:   the muscle tightness can impact how they walk.

Todd Slosser:  Yeah.

Dr. Tim Feyma: Many of the textbooks will say that cerebral palsy is static which is just not true.

Todd Slosser: Yeah.

Dr. Tim Feyma:  It changes so these kids need chronic care.

Todd Slosser:  Yeah. Speaking of that, I mean I’d imagine that a lot of the kids that come here come here for the entirety of their life. They come for 20 to 30 surgeries so you really get to know them as a patient. Do you also get to know sort of the families and do you ever have the chance to sort of deal with them on an emotional level or is it all clinical and you’re sort of behind the OR door?

Dr. Tim Feyma: Yeah, I mean the main thing that keeps me at Gillette is actually the families-

Todd Slosser:  Oh, is it?

Dr. Tim Feyma:  because I think the families that we care for, the kids that we see, they’re motivated. They want to work hard.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  They want to optimize. They want to be the best them they can be. We’re happy to help with that. I say it to families everyday and I feel it everyday truthfully in my soul which is just we are not the most important people in these families’ lives. It’s the family.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  So we are guest stars that kind of help facilitate things, but it’s the families that are motivated. They stick with the home programs, the school programs. It’s just a joy to take care of these families, and they are amazing.

Todd Slosser:   Yeah. So you get to actually interact with them on a day-to-day basis? I’d imagine you develop sort of almost like a working relationship with these families because you’re working with them and then their children on maybe not a day-to-day basis but a case-to-case basis.

Dr. Tim Feyma:    It’s a different kind of care. There are doctors that will see a pneumonia and then they’re done.

Todd Slosser:  Sure.

Dr. Tim Feyma:  This is more chronic care. We get to know families very closely. It’s hard. I think it’s a very common topic in all of adult life now, a lot of burnout.

Todd Slosser: Yeah.

Dr. Tim Feyma:   Burnout for teachers, burnout for doctors, burnout for career du jour, but I think it’s hard to be burnt out in a place where we continually see these success stories that may never make the newspaper, but each one is exceptional.

Todd Slosser:  Yeah. Well I think that’s important. It’s not about the one that’s going to make the newspaper. It’s about the 30 that don’t that are making an impact in that one patient’s life.

Dr. Tim Feyma:  Right.

Todd Slosser:  Because if you can impact someone, especially someone’s child, you’re not impacting just that child, you’re impacting their parents and their grandparents and just sort of that whole community that’s around those people.

Dr. Tim Feyma:   Yeah, you’re absolutely right. It is amazing to see how every patient that we see is essentially the tip of an iceberg. I think the part of iceberg we don’t see under the water is the grandmas and grandpas and the aunts and uncles-

Todd Slosser:   Yeah.

Dr. Tim Feyma:  and the therapists at home and the schoolteachers. I mean it just … Every child we see is that tip of the iceberg, and we are helping advocate for kids with a massive network.

Todd Slosser:  So do you think … I’m just going to tie this back to something you said earlier, but you said your mom worked in special education and she kind of cared for those kids that needed extra care. Do you think that’s what it was that sort of drove you into this field and keeps you motivated in it?

Dr. Tim Feyma:  Absolutely.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  The kids that we see need an advocate and a personalized advocate. Not every patient I see gets the same treatment and we have to listen to the family every time. We have to listen to the child every time. Their priorities might not be our priorities.

Todd Slosser:   Right.

Dr. Tim Feyma:   It took doctors a long time to realize that maybe we should ask families what they think because for us, a win is being able to walk and stuff like that.

Todd Slosser:  Right.

Dr. Tim Feyma: But if a kid’s main issue is “It’s my handwriting and I want to be able to write better at school,” we’re in a time now where I think we really have learned to listen better which is kind of crazy that it took us that long to learn that.

Todd Slosser: Yeah, but that’s very, very important now. You can be an advocate for that.

Dr. Tim Feyma:  Yeah.

Todd Slosser: So I’d imagine if you’re coming in with your child who’s having these pervasive issues, you may run into other families that you see sort of often in this very specialized environment. So does that develop a community of families around the Gillette Children’s Hospital?

Dr. Tim Feyma: Absolutely. The most amazing thing about the community we care for here is, not to get too detailed, the cerebral palsy as a whole is about probably 3% of the population. The majority of cerebral palsy patients are very mildly impaired, but the very medically complicated, there may be one or two in a community and the cities where there’s more people, there’s more. But the parents often feel very isolated. The parents, with social media, has been great. It helps connect people. When they physically come here, they often will mention that they feel like it’s kind of home. So families that have the exact same sort of path that they’re dealing with as well, you can’t fully know what the path is like unless you’re on the path.

Todd Slosser:  Yeah.

Dr. Tim Feyma:   So I can counsel families, but I can’t quite counsel them like other families can. Many families tell me they make connections here in the waiting room, on the wards unfortunately after surgery, Ronald McDonald House.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  We get along well with them. Or they connect in the Ronald McDonald House.

Todd Slosser: Yeah.

Dr. Tim Feyma:  It’s just a certain type of caring and coping I can’t give, and there’s community here that helps parents quite a bit too.

Todd Slosser:  Yeah, I think that you can offer a lot of help and a lot of comfort, but there’s a lot of comfort that can be given from someone else who’s actually in the same position as a mother or father who’s got a child with that issue, right?

Dr. Tim Feyma:  Yeah.

Todd Slosser: So having that sense of community of people who they may see as peers giving them support, I think, goes a long way.

Dr. Tim Feyma:  The challenge too is … As many know, I also have a daughter with special needs so I spend a lot of my time in the community caring for my own daughter. We just finished her school evaluations and everything like that. She also comes here for care. So many of the families I care for know that. I don’t like to trot out my poor daughter because my path is different than everybody’s path.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  My child’s not in a wheelchair. My child’s not G-tube-fed, but she’s doing quite well. I think a lot of parents have spread that about me. They know that, and I think it gives a different level of trust because I-

Todd Slosser:  Yeah.

Dr. Tim Feyma:  kind of am walking the walk as well.

Todd Slosser:  Yeah. I only say this because you’ve been doing this, actually practicing for 10 years here at Gillette, and I imagine you have people who come to you and see you as sort of an industry expert in this area. So what advice do you give people who want to treat sort of complex medical issues?

Dr. Tim Feyma:  My advice to somebody who wants to get into this field would be quite simply volunteer, get some experience, get some exposure. It’s very easy to become enamored with what the job might be, but you need to see what the job is. I think I made the right decision to be a doctor. I love being a doctor. There are parts of being a doctor I don’t love. I think that’s part of any job.

Todd Slosser:  Yeah.

Dr. Tim Feyma:  I think exposure, experience, and if you’re passionate and you think it’s for you, then keep your eyes on the things that keep you passionate and understand you’ll have to accept some of the other stuff.

Todd Slosser:  Yeah. Well excellent. Thank you so much. Dr. Feyma, thank you so much for joining us here today on Scrubbing In. I appreciate your time.

Dr. Tim Feyma:  Thank you much.

Todd Slosser:  Thanks for listening to Scrubbing In. Please take a second to give us a rating on your podcast app and subscribe so you won’t miss out on what we have coming up. See you next time.