Navigating Pediatric MS – Challenges, Treatment, and Hope for the Future

Navigating Pediatric MS – Challenges, Treatment, and Hope for the Future

Episode 182 – Podcast Transcript

[(0:25)] Stephanie Den: Welcome to the Can Do MS podcast. I’m your host Stephanie Den. I live with MS, and I’m also a clinician and MS Researcher. In this very special episode, we’re going to first chat with Emily Blosberg about her experience being diagnosed with MS at a young age and her incredible work in the pediatric MS world. Then we’re gonna talk more about the ins and outs of pediatric MS with Dr. Tanuja Chitnis, a Harvard Neurology professor with over 25 years of experience in MS. Dr. Chitnis is the founder of the Pediatric MS Center at Mass General in Brigham, and has made significant contributions to the field through her leadership in the CLIMB study and MS Fellowship Program. Hi, Emily, I’m so excited you could be here with us today.

[(1:05)] Emily Blosberg: Oh, it’s so great to be with you. Thanks for inviting me to join you today.

[(1:09)] Stephanie: Absolutely. Let’s start with just hearing your story. When were you diagnosed with MS?

[(1:14)] Emily: I was diagnosed with MS when I was 15 years old, but my dad was actually diagnosed when I was two years old. So I’ve grown up in the MS community.

[(1:23)] Stephanie: Wow. That’s fascinating. So you sort of had a parent who could almost guide you through the journey.

[(1:29)] Emily: Yeah, definitely. And so when I… I’ll, I’ll tell you a little bit about how I was diagnosed. Um, I was in eighth grade, I was 14 years old and, um, I was getting ready for school one day, and I noticed some numbness and tingling in my hand. I told my parents, and they were like, yeah, we’ll just keep an eye on it, see what happens. And, um, by the end of the next day, I had numbness and tingling from head to toe. And obviously it was very distracting being in school and trying to do my schoolwork and having all these weird sensations. Um, I went to a doctor and they said, we don’t know what it is. Um, I had braces on at the time, and one of the doctors ordered an MRI, but since I had the braces, the MRI was pretty much useless. It was just a giant reflection out of my mouth.

Um, and at that point, the doctor said, it’s probably nothing. You’re too young for it to be anything. Well, that answer didn’t quite sit very well. Um, over the course of the next 14 months, I was going to all sorts of doctors and appointments and, and I lost the ability to walk for a while. My vision, I had vertical nystagmus. Um, I missed my entire eighth-grade year of school. Thankfully, I was in all advanced classes, so I was already taking 9th grade classes as an 8th grader. So I didn’t fall behind academically. I, um, just ended up being more at the same level as my, my classmates by the end of the school year. I, I was diagnosed in November of my freshman year of high school. And for the first few months of school, I was excited that I was able to re-establish who I was.

I wasn’t the one who was sick all year in eighth grade. I wasn’t the one who missed the entire eighth grade year and I was only able to attend the lunch hour so that I could be getting that social time with my friends. Now I was in a new place where nobody knew that. And I could kind of control what information I wanted people to know, however, that kind of took a turn. Because since I wasn’t being honest to my classmates, there were rumors that were starting about, about me. And why I was going to the nurse’s office to take a rest between classes or why I was turning in my assignments late. And why the teachers were getting… Giving me extra special treatment to be able to keep up with my schoolwork and keep up with my classmates. And I started being called teacher’s pet and just horrible things were being shared about me that weren’t true. Um, I was diagnosed in November of 2011 at the age of 15 and by, I think it was February. Um, I actually… I needed some extra credit in my biology class.

[(4:36)] Stephanie: As [inaudible] for a start.

[(4:41)] Emily: And I asked my teacher, I said, how can I get some extra credit for this class? He said, well, you can give a presentation about anything biology-related. I thought about it and I said, well. I could do one on MS, I guess.

[(4:54)] Stephanie: Yeah.

[(4:55)] Emily: It’s something that I know quite a bit about because my dad was diagnosed when I was two. I have now been living with MS, but people haven’t known that. So I gave this presentation about what multiple sclerosis is and how it functions. And, and everything that I knew about MS and all the research that I was doing. And I ended the presentation by saying I am not looking for your sympathy, I’m just looking for your support because I have MS. And my classmates just had questions. They just wanted to know more. They wanted to know more about how they could help me, what they should do, how they should treat me, if they should treat me any differently. And I said, no, just be my friend. It’s really all I want. And at that point, I felt so empowered to continue to stand up for myself and continue to educate people about what it was like to be a teenager with MS. Because I, I didn’t have to hide anymore. And I felt so free. And still at peace.

[(6:01)] Stephanie: Yeah. It’s a lot to try to control the narrative all the time, right?

[(6:06)] Emily: It is.

[(6:07)] Stephanie: Project that, I’m fine, everything’s fine, it’s all good.

[(6:11)] Emily: And I learned that I didn’t need to hide it.

[(6:14)] Stephanie: Yeah.

[(6:15)] Emily: It’s nothing that, that is nothing to be ashamed of, it’s nothing that I did or my parents did or anybody. It’s, it’s something that happens.

[(6:26)] Stephanie: Yeah, 100%. And I totally get that feeling, you know, I wasn’t 15, I was 25, which might as well be a completely different experience cause I can’t imagine being diagnosed in high school or middle school. Those years are hard enough as it is, but I definitely also can empathize with the wanting to keep it close to the chest because I was not necessarily doing the best emotionally and I didn’t have that capability of handling like the pity party and emotionally supporting other people through it. It’s exhausting. So, “putting on the brave face and staying strong”, was my initial response to, but I think it’s interesting how when you say, as you say, you felt freed, that was the moment when you really were allowed to take MS into something that happened to you, to something that you could do.

[(7:27)] Emily: Yes.

[(7:28)] Stephanie: And which leads me into your amazing work with Oscar, the MS monkey.

[(7:33)] Emily: Yes.

[(7:34)] Stephanie: Can you tell us a little bit about Oscar?

[(7:35)] Emily: So Oscar, the MS monkey was a passion project that started actually while I was in high school. Um, I… uh… After I was diagnosed with MS, I went everywhere to try to find someone else, my age living with MS. And I couldn’t find anybody until, uh, about a year and a half later, I found someone in the next state over someone at the MS society connected me with, with another girl, and we were able to connect in person and it was… That really was a moment of, Oh my gosh, I can be normal. We went to the mall together. We went and had pancakes at IHOP. We were just being normal teenagers and we didn’t have to explain anything to anybody. And I, I left that that interaction, just thinking to myself, there are other people who have felt lonely living with MS.

There are other kids out there who have felt lonely living with MS. I don’t want them to feel lonely. And so I, um, created a nonprofit organization, as I said, called Oscar the MS monkey. And initially I was just sending care packages to kids around the world who had been diagnosed with MS. Each of them has one of Oscar’s buddies, which is a smaller version of Oscar, who is a sock monkey. And, um, then as people. I met, or as people saw that other people around the world had these sock monkeys, they said, well, we want to meet each other. And I said, I want you to meet each other too. I, I met this wonderful, this wonderful gal and I felt a sense of belonging. I want other people to feel that too. So we had our first family camp, um, and it’s… We’ve had a family camp every year since 2018 with the exception of the pandemic interruptions.

Um, and then we started our teen camp, which, which is for those who are 14 to 18 years old, and we have a program for young adults who are 19 to 25. And the teen camp, um, largely focuses on what is MS. Answering those questions for teenagers who maybe they’re afraid to ask their doctor these questions or sometimes we find that mom and dad tend to take over the appointments a little bit more. Um, so we, we empower the teenagers to have the loudest voice in their healthcare team and to really be able to ask their doctor those questions or to help them find those resources that they need. Um, so the team camp, as I said, is mostly just the baseline of what is MS, along with fun camp activities. We go rock climbing, we go swimming, we go kayaking, we paint pottery, do yoga. Um, things that are just adventurous things. But we make sure that all of the activities are either outside in the water or inside in the air conditioning. Because people with MS don’t like heat.

[(10:41)] Stephanie: No

[(10:42)] Emily: No, no we do not. No. And then our young adult program, uh, last year was our first year of officially doing this program. And it is really focused on educating between the transition of pediatric to adult care. Um, some of the topics that we have for our education seminars this year, we have um, we have an insurance expert coming in to discuss benefits as people are applying for their, their first adult job. What are the benefits they should be looking for? Um, what is a copay? Oh, you know, all the, all the terms that. are so confusing as you’re transitioning into adult life and trying to help them through that transition. We have a financial expert coming to help discuss how to set up accounts for their financial future as a young adult, also facing medical expenses.

We have a neurologist coming to explain how all of the DMTs work, the disease-modifying therapies. Um, mostly the mechanisms of how, you know, how does this one interact in the body? How does this one stop the progression of MS and giving that base education to the young adults. And then we also are hoping to have, we haven’t confirmed this yet, also hoping to have, um, someone from the, uh, he’s a representative in Congress, um, helping to teach everybody how to share their story and the impact that their story can have. Which I’m very excited about that too. I think that, um, as you and I said, you know, sharing your story really is powerful and it’s empowering and it’s freeing.

[(12:39)] Stephanie: Yeah, it takes it from something that’s happening to you to something that you can grow from and thrive from.

[(12:48)] Emily: Yeah.

[(12:49)] Stephanie: And your work is just so incredible and it’s so exciting. And the resources you described are just amazing. We will definitely be linking to your website and the resources you offer in the description of this podcast. Um, so thank you for building such an amazing community.

[(13:04)] Emily: Oh, I love all these. I love all the people that I work with. They’re such incredible people. I, I actually have an opportunity to do a Zoom call with the teenagers every month. Um, we meet on the 15th of every month and it’s, it’s a time for the teenagers to just meet each other online. The conversations are very casual, sometimes they get a little crazy. They’ve been planning their, their the school bus trip to the moo- or no, to the sun, the last three years. They’ve got their whole packing list figured out and everything.

[(13:37)] Stephanie: Who says life has to be serious? Just cause…

[(13:38)] Emily: Right.

[(13:40)] Stephanie: Absolutely not. What is the one thing you’ve done so much, but what is the one thing you wish the pediatric MS community, whether it’s patients, parents, medical professionals really knew about living with MS as a child “file”.

[(13:58)] Emily: That there is a community, that there is a community. As I’ve said, MS is such a lonely, or can be such a lonely disease. And especially when you can’t find the people that, that you can relate to. And that’s my, my big focus right now is just letting people know that, that they are not alone. That there are people who you can relate to, and there are people who understand and, there are people who can answer your questions, um, even if it’s something about how do I manage my MS while I go to prom. That’s a, uh, something that’s on the top of the minds of many teenagers.

[(14:38)] Stephanie: Yes, I love that. Again, your story is just so inspiring and it’s clear that you’ve turned your own challenges into an opportunity to help others, which is so amazing. Um, what advice would you, I guess, or do you give to young people recently diagnosed with MS?

[(14:56)] Emily: Oh, I have to think about this one for a second. Um, don’t be afraid to learn. Don’t be afraid to learn more about your MS because at this point in time, it’s something you’re going to be living with for a long time. And the more you can educate yourself, the easier it’ll be. And the more you can educate yourself, the more you can educate other people, and the more other people can support you, too.

[(15:24)] Stephanie: Yeah. Amazing. Thank you so much for joining us, and I hope that you’ve inspired some listeners to also take their struggle. Maybe they’ve recently been diagnosed with MS, and to do something positive and to connect with your community, and I know I want to work with you.

[(15:45)] Emily: You’re welcome anytime.

[(15:47)] Stephanie: Well, thank you again for sharing your story, your time with us today.

[(15:50)] Emily: Well, thank you so much.

[(15:54)] Hi, Dr. Chitnis. Thank you so much for being here to tell us a little bit more about Pediatric MS.

[(15:58)] Dr. Tanuja Chitnis: Thank you, Stephanie. It’s a pleasure to be here.

[(16:01)] Stephanie: We just spoke to an incredible young woman who has lived with MS firsthand since the age of 15. So now I’d love your perspective as a clinician and as a researcher, how is pediatric MS different from the adult form of this disease?

[(16:19)] Chitnis: Absolutely, Stephanie. So, um, pediatric multiple sclerosis wasn’t well recognized about 20 years ago, and many of these kids went undiagnosed. Um, we now today, thanks to the efforts of international groups and national groups, have better diagnostic criteria for pediatric MS, and we know that it’s part of the MS continuum. So, it’s got the same biology and pathology as adult MS. But there are some important features that can be termed differences. So one important feature is that Pediatric MS is a much more inflammatory disease and we’ve shown that these kids can have two to three times as many relapses as a typical adult patient. And thinking about that, you know, the immune system of children is just more active and that’s probably one of the explanations for this.

So for that reason, it’s very important to prevent relapses since they occur so frequently in young kids and teenagers. The other important differences are some good news. So we know that despite having more attacks, kids can recover better from attacks than adults. And again, this is sort of the fountain of youth that, in general, the younger immune system and and nervous system does repair better in children compared to adults. So that’s some good news. But of course, we still want to prevent these attacks. And then, over the long run, um, disability levels do accrue more slowly in pediatric onset MS, but yet it is very important again to treat this early on so that at a given age, as a young adult, these young people don’t have disability. Um, it’s also very important to differentiate Pediatric MS from other similar diseases. And there’s a new disease called MOGAD or myelin oligodendrocyte glycoprotein antibody disease, which is a very… It’s a mouthful, um, and that can mimic pediatric MS or look a lot like it and often prevents and presents in children. So, that’s a, an important, um, differential diagnosis. And, um, you know, just given everything that we’ve learned about pediatric MS, we know that early and effective treatment is really important in managing disease.

[(18:29)] Stephanie: Thank you so much. Now, at what age do you typically diagnose somebody with pediatric MS? And what are some early signs that parents and doctors should look out for?

[(18:42)] Chitnis: Yeah, so most of our young people with MS present around the age of 12 or 13 or older. So really between the ages of 12 to 17. But we do have some patients who present very early with pediatric MS and I’ve had a few cases, rare, but a few, um, cases presenting as young as three or four years old. And again, really important to differentiate that from other similar diseases like the MOGA that we talked about or, or something called acute disseminated encephalomyelitis, but we do have some very young presentations of pediatric MS.

But most of our, our kids are, in fact, teenagers. And so that’s a, a really important age group to recognize and, you know, getting through high school is tough enough and, uh, without having a diagnosis of, um, of MS or a chronic disorder. So some of the symptoms that, um, young people can present with include vision problems like blurry vision or even loss of vision in one eye or even both eyes, um, double vision, weakness, uh, sensory changes like numbness, um, balance issues, um, and also occasionally cognitive changes. So, um, not being able to think as clearly or fatigue. So those can be some of the presenting symptoms. And these usually present in the form of attacks or relapses. These relapses or attack symptoms. usually last for at least 12 to 24 hours. So it’s not a transient numbness of your arm, but it’s really something that stays there and lasts for, um, more than a day.

[(20:18)] Stephanie: How would you go about diagnosing somebody who’s so young, right? I can’t imagine a three or four year old. What is the process like for a pediatric MS patient when they come to clinic?

[(20:28)] Chitnis: Yeah. So it is, it is a bit of a process. Um, so there’s not one blood test that can say, yes, this is MS or not MS at the moment. We are working on that, but that would be, you know, something very nice to have. We don’t have that at the moment. So how we diagnose MS and pediatric MS is really a combination of different factors. It depends on a good history, understanding the symptoms and attacks someone has had, um, the neurological exam, also MRIs are very important. So an MRI of the brain especially, sometimes the spine, um, and also something called orbits or looking at the optic nerves is important. And then a lumbar puncture, which is also called a spinal tap, is important in, in many cases in helping us make that diagnosis and also make that diagnosis as early as possible since we want to start treatment as soon as MS is diagnosed.

[(21:25)] Stephanie: Yes. And speaking of treatment, what are the options for pediatric MS and how do you decide on a therapy for such a young patient?

[(21:34)] Chitnis: Yeah, well about, you know, 10 years ago we did not have any approved treatments or really much data about treatments in pediatric MS. And thanks again to international efforts and, and support from many groups, um, we now have clinical trials and also longitudinal studies of treatments in pediatric MS. There is one FDA approved treatment called Jelenia, or also known as Fingolimon. It’s a daily pill, and it is an, it’s a highly effective therapy that, um, our group, and really a large group of folks have shown is very effective in preventing relapses. Especially compared to some of the older injectable therapies like interferons. Um, but in general, you know, there are more high efficacy therapies like B cell antibodies, also known as B cell depleting therapies, that are being trialed and, um, and used in the clinic. And so in general, I recommend a highly effective therapy for my pediatric MS patients because they are so inflammatory and have so many relapses. And this can also include a drug called natalizumab, um, and that’s been studied also extensively in open label studies.

[(22:45)] Stephanie: Yeah, definitely with them having so many relapses and such active disease, it is nice as you mentioned that in the last 10 years we have come up with so many great treatments that reduce relapse activity so effectively, which gives me a lot of hope.

[(22:59)] Chitnis: Absolutely. And, you know, and I think also this,, um, it is good that we have choice and, and I always say it’s very important to involve everyone, especially the young person, um, in this decision making process. Of course, parents want to weigh in, but you know, ultimately it is, it is the teenager or young person who is taking this treatment. So they, um, should really be on board and, and agree with, uh, what’s being chosen. And, and I think that choice depends on, on many factors. Sometimes they’re medical reasons why one might choose one therapy over another, we do testing for various, um, prior infectious diseases or vaccinations, and that might also inform a choice. And then sometimes it comes down to factors like, do I prefer to take a pill on a daily basis or come for infusions, um, on a, on a less, uh, frequent basis or confortable in fusions, uh, on a less frequent basis. So, um, it is good though, we have different options that are coming down the pike and, and, um, you know, not one size fits all.

[(24:03)] Stephanie: Yeah, I mean, you mentioned high school is hard enough, right? So when you pile a chronic illness and possible medication side effects on top of everything, it’s… Again, it must just be so overwhelming. So what advice do you have for young people and their families who are navigating school and sports and social lives all alongside MS?

[(24:27)] Chitnis: Yeah, I think fortunately we found that after that initial, I would say six month period of getting diagnosed and starting on a treatment and kind of settling in, um, that a lot of our patients, our kids are doing very well and I tell all of them that MS is not a diagnosis that slows you down or prevents you from doing all the things that you want to do in life, that you can still continue to go to school, go to college if that’s your choice, um, you know, do all of the things that you want to do in terms of sports and activities and in the distant future have a family if that’s something that you want to do.
So, you know, it shouldn’t prevent you from pursuing your goals, and I found that many of my, uh, young people and my patients have continued on to do wonderful things.

Um, so I think after that initial period, um, fortunately with highly effective treatments, everything is is very possible. The… You know, but it is important to recognize that things can come up along the way. And other important areas that pediatric MS care team should focus on is ensuring that that young person has support in school. And that includes Um, you know, a 504 plan or if needed something called an individualized education plan, an IEP and, uh, this might be done with the help of cognitive testing or a neuropsychologist, just to identify what the strengths and challenges are of any, any individual. Um, you know, and I think it is a stressful, um, diagnosis at times and it affects people differently in terms of how they, they’re feeling, um, depression is something that we have seen and is something very important to monitor over um, a, a young person’s treatment and, uh, and disease course. So, um, you know, paying attention to all of these factors with support from, uh, psychologists, family counselors, uh, in a clinic is very important.

[(26:29)] Stephanie: Yes. I loved what you said about making sure you can tailor school and action plans and using cognitive assessment to better understand compensating for symptoms. I think those are all really great practical tips. And for parents too, right? FMLA, making sure that they have that flexibility at work and have the time off to, to help their children out. All of those things are absolutely essential to just navigating with life with MS for everyone, much less a parent and child.

[(27:01)] Chitnis: Absolutely. Yes, and I, I think parents and, and family members need support as well. So, um, it is, it is challenging to, uh, be faced with this diagnosis in your, in your child. Um, and… But I, I think, you know, at the other end of this six-month period that there is a silver lining that most people come out of it and say, well, it has been challenging, but now we’re going to move forward and really do all the things that I want to do in life.

[(27:27)] Stephanie: Yes. And I always love to point, uh, parents to the Pediatric MS Alliance and all of the work that they do to support parents whose children do have MS. And if you need a community or, and you don’t know where to turn, I think they’re a great resource that we can link to in the, in the description of this podcast too.

[(27:45)] Chitnis: Wonderful.

[(27:46)] Stephanie: So, tell us what’s on the horizon for pediatric MS research. Anything exciting that gives you hope? Any clinical trials that are going to change the future, do you think?

[(27:57)] Chitnis: Yeah, I think, um, you know, there are some very important new clinical trials that are ongoing and should be completed soon, um, which will give us even more choices, hopefully, for high efficacy therapies. These are trialing. The B cell therapies for pediatric MS and figuring out the right dose for young people, um, and also the overall effectiveness of these drugs and again, introducing more choices really important. So I’m really looking forward to the results of, of all of those studies and um, and then, you know, even um, long-term natural history studies as we term them, sort of collecting clinicians, collecting data to tell us what are the long term effects of these different treatments in young people. So those are really important um, pieces of information that we’re we’re gathering.

I think also there’s a lot more research now into biomarkers that can help guide treatment decisions or even monitoring uh, treatment and and uh, how effective it is, um, there is a lot of work on remyelination, on neuroprotection, so if there is damage then how to repair it. Um, and I think also we’re getting a lot of uh, really exciting data about just how, um, lifestyle can impact the course of MS and important data around optimizing diet, you know, we know that, uh, not eating junk food is important, but that’s also been shown in, in now several studies, um, and trying to adhere to is something called a Mediterranean diet as much as possible. Um, lots of veggies, fruit, you know, not, uh, limited red meat and, and more emphasis on fish and chicken. So, trying to work that into your diet is really important.

Also, um, less processed foods. We know that processed foods, uh, can inflame the immune system. And so, really important to try to stay away from those. Um, exercise, regular exercise is important. So, other lifestyle factors, um, we now better understand that they can help qnd also getting a good night’s sleep. So I think, uh, one of the things I tell my kids is no devices at a certain time, and so that you can acclimate and get to bed, um, at a reasonable hour. So those are all other, um, important things that we, we share every day in clinics. And I think also just the amount of international collaboration that’s ongoing to both understand and improve treatments for pediatric MS is really astounding. So I want to thank the international community for all of their work and all of our patients and families who participate in, in studies and, um, and trials.

[(30:34)] Stephanie: Absolutely. Really good call out. Thank you so much for your time and your knowledge. We really appreciate you being here to talk about this really important topic with us.

[(30:44)] Chitnis: Thank you, Stephanie. My pleasure.

[(30:46)] Stephanie: Thank you for listening to this episode of the Can Do MS Podcast. If you like this episode, please leave us a rating and review on Apple Podcasts or Spotify. We appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do MS Podcast. Until next time, be well and have a great day. [music]

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