POTS Diary with POTS Parent Leigh from Washington DC

Episode 145: POTS Diaries with Leigh [00:00:00] Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions, and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive but thrive. This is the Standing Up to POTS podcast. This is the standing up to pOTS podcast. [00:00:30] Jill (Host): Hello, fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries. Today we are speaking with Leigh, who is a POTS parent. Thank you so much for speaking with us today, Leigh. [00:00:45] Leigh (Guest): Thank you so much for having me. It's an honor to be here with you. [00:00:50] Jill (Host): So for starters, can we just get to know you and your family a little bit? Can you kind of set the scene for your story? [00:00:57] Leigh (Guest): Sure, absolutely. I'm a mom to two wonderful, beautiful sunshine daughters. One is now 19. She's the one that has POTS and she is in college. And my other daughter is a junior in high school and I'm married and we have two dogs who are the other lights of my life, and we live in the DC metro area. [00:01:23] Jill (Host): Okay. And tell us a little bit about you. What are you passionate about? [00:01:27] Leigh (Guest): Sure! I am passionate about many different things, but professional wise, I'm a former first and second grade teacher, and then I stayed home with my girls, and I've always had different businesses. I've always had a passion for health and wellness, natural health and wellness, holistic health and wellness. I was able to help myself heal from some health condition. And so, I went back to school to dive deeper into that and became an integrative nutrition health coach. And that is what I do today. I love helping teenagers and their families. That's who I work with, especially with the high, high rate of stress, anxiety, overwhelm, you know, kids with chronic health conditions and very passionate about that. And then hobby wise, and just a little bit more about me, I love to be outside doing anything in nature, like especially taking hikes with my family. I love to exercise. I love to create recipes. I find my zen in the kitchen, just gimme a whole bunch of food and I'll create some recipe with it. I prefer cooking over baking, but I will do some baking and I love just to be creative. One of my outlets is definitely just doing crafts and decorating and I love to read also. [00:02:46] Jill (Host): Wonderful. So can I ask, has your daughter always had signs of POTS or did you have a life pre-POTS, and if you didn't have a life pre-POTS, can you just give us like a little postcard of what that looked like before POTS set in? [00:03:03] Leigh (Guest): Sure. That's a great question. So, no, she did not always have signs, although once diagnosed and I realized that there were signs. But now she was diagnosed in eighth grade, but I would say at age nine is when she started to have some health conditions. And prior to that, just a very social active child. Loved to be with her friends, very creative, loved school, loved learning. I would say like an out of the box thinker. Very curious. Ever since she was really little asking lots of questions. Still very curious today. So, you know, we were just very active family. Some of the sports she did were dance. She did softball and then she did a horseback riding and cheerleading. The horseback riding and cheerleading were kind of the two at the time that we started seeing some medical condition sneak in. So there was a prior, but then again, once she got diagnosed, even age four, I was able to go back to and saw a sign. [00:04:07] Jill (Host): So, what was the first sign that something was wrong enough that you had to say, okay, time to really take a look at this? [00:04:14] Leigh (Guest): Yeah, so our story has kind of two paths. So like I said, one started at age nine, she was on swim team, and all of a sudden she wasn't able to finish swimming a whole lap. And this was a kid who swam for a few years already prior to that and would like get chest pain and breathing issues. So I addressed it by taking her to both a pediatric pulmonologist and pediatric cardiologist. And the only thing that they can come up with through the pulmonologist was exercise-induced asthma. And so that kind of explained it a little bit. And then that fall, she came down with sudden foot pain, just totally out of the blue. We had been ice skating that day, so I did think maybe she had a injury that didn't manifest until the evening, but took her right to the ER. They couldn't find anything. Took her to a orthopedic the next day, couldn't find anything, but she couldn't walk. I mean, she was in so much pain. And so they did put her in a cast. And that just started years worth of a journey of trying to get answers of this chronic foot pain that literally came outta nowhere. Thankfully, early on there was a doctor who ran some blood work and they did find that there was strep in the blood, so I always stuck to that and made a connection. Just a little side note that my other daughter, when she was little, she came down with toxic synovitis at the age of 18 months. Toxic synovitis is a result of a infection or virus that then resides in the hip. For her, it was in the hip. So she had prior virus and then she couldn't walk like at 18 months. All of a sudden picked her up from her crib one day and she couldn't walk, and she was diagnosed pretty quickly with toxic synovitis, and she had that on and off for three years. So I was very familiar with how a virus can affect your joints and muscles and pain. And thankfully my other daughter grew out of that. So I started pushing that with the strep, with my daughter that a lot of doctors gave pushback, kind of blew it off. So long story short, she went through many different doctors testing different therapies. Never really were on medication, just kind of more therapies. I mean, she was young. And so, eventually she went from like days of not being able to walk, casted, crutches, boots for her foot, and you know, fourth grade are very active. So this started to affect, you know, she kind of actually didn't let it affect her too much, but social life and just being, I mean, we did a lot of physical therapy at her mindset changed where she just kind of accepted it. It made me very, very sad. But eventually she was able to get on with life and just kind of live with it. And she continued to horseback riding. After taking a break for a while, she went back to it. She even decided to try cheer and she lived through it with the pain. To this day I get like just so emotional thinking about it. And then the other leg of her story is, flash forward to eighth grade, she did get a concussion. It was actually, uh, kind of a silly self-induced, not on purpose, but she opened her bathroom door or she was in her bathroom, and the door she didn't realize was right there. She thought it was open and she hit her head. So, it ended up being a concussion and after three months of therapy, all her symptoms were getting better except for her heart rate variability, which is a symptom of a concussion. And they said, you know, we think this can be something underlying. And so, they sent us to a local doctor here who specializes in POTS, who's very well known in the POTS community. And sure enough, she was diagnosed with POTS and it kind of, once she diagnosed her and also connected it to the foot pain, which now we're talking – what - four and a half years, five years - it almost was like a relief to have some answer finally, because he connected that to EDS - Ehlers-Danlos, which she also is diagnosed with, and the POTS, the lack of the blood flow to the foot. And so that story began and it wasn't connected. Her diagnosis was not connected to concussion. I know many kids with POTS, it is. But her diagnosis, we believe she probably had some form of dysautonomia since, like I said, I even think back to age four when she was running on a soccer field and she would get like chest, you know, kind of pain. But I just thought, oh, she's four. She's just learning how to run. And it probably manifested. There were different reasons. Like she had an abscess infection that she was hospitalized for in sixth grade that we think maybe probe did a little, and then just manifested in eighth grade after the concussion. [00:09:27] Jill (Host): So, what is it like as a mother to watch all of that? Because listeners of our program will have, at this point, heard from a lot of patients as they went through that period of knowing that something was wrong, always feeling off in various ways, not knowing what it is, wondering if the world believes you. What - what is it like from a mom's perspective? [00:09:46] Leigh (Guest): I’m tearing up even as I think about it, and think back to all those years, which has been now 10 years, it's extremely gut-wrenching. I don't even know if there's real words to describe the heartache, the gut wrench, you know, the heart pain myself, of knowing that all I wanna do is help my daughter and make her feel better. There's also guilt that goes with it. Like, one story before she got diagnosed, the spring before she got the diagnosis of the exercise induced asthma, she ran Girls on the Run race and she kept saying to me, “Oh, you know, I'm seeing spots. I don't know if I can finish. My heart” you know, holding her chest. And I just keep like, cheering her on. “We can do it. We can do it.” You know, I had no idea she hadn't even been diagnosed with asthma at that time. So, you know, some guilt and I just start thinking about what, what could have caused this? What did I miss? You know, she fell when she was like, two, and I went back to thinking, oh my God, did I miss something it up from back then? So there's guilt, there's gut-wrenching, just pain of, you know, how do I help her? What do I do? And then there's frustration, there's anger, there's every single emotion because you have these doctors that are basically, you know, yes, some were very helpful and try to listen, but just couldn't give answers. But at the end of the day, you just feel like almost angry because they make you feel like that we’re the problem. I mean, we had doctors say like, without maybe saying the exact words, but basically insinuating this is in your head or you need to just stop thinking about it. I mean, we have one doctor that said you need to wear just big camping boots for your foot pain. That's gonna help your foot pain. I am not kidding. I won't name the hospital, but we live in outside Washington DC and it was a major, major, major hospital, very well known hospital that I went to because I thought I was gonna get answers for the foot pain. We both left there just – we almost didn't even cry at that one. We've cried at others, but that one we just were like, oh my God, what's happened? She was a little older at the time. We're like, what just happened? So, so many emotions I would say I wasn't even able to recognize and honor and be with because my only focus was I need to get her better. I need to get answers. I need to get help. And I love that you asked that question because I want other parents that are listening to know how important it is to honor and recognize your emotions and to know that it's okay to sit with that and it's not selfish, and it's important to take care of yourself because I learned that later. And we can only show up for our kids if we are taking care of ourselves, can show up so much better for them and, and go into these appointments really, you know, mindfully well equipped if we're taking care of ourselves. So I still get very emotional. [00:12:48] Jill (Host): Can I ask if it affected any other family dynamics? You know, did the other child feel like, Hey, you know, how come I'm not getting as much attention? Or were there any grandparents saying, Hey, why do you indulge this child who's imagining this? Or like, was there any other weird stuff that makes it hard to be in your position? [00:13:06] Leigh (Guest): That's a great question. My husband and I were always, I would say, on the same page, so that was really good. I would say I took more of the, you know, being involved, because I was working from home at the time, I had tons of flexibility. So I was able to do that. I was running my own business and I really just took a break from it. So I was more of the caregiver. So sometime that was affected where like I was just so exhausted and mentally exhausted and he tried very hard, very supportive, but of course it's hard when you're not at the appointment. But we both were definitely always on the same page, which was helpful, which I know often that doesn't happen. And then with our other daughter, they're super close. My girls were always super close. I think she was young enough that really at the time she didn't really totally understand what was happening. Even now, like sometimes we'll talk about it and she'll tell us that like, I don't think she was really too aware of it. Or a couple years ago I tried to do more educating so she could really understand, and I also wanted her to understand what POTS was ‘cause she was so young at the time, just in case she had anything that she was experiencing and maybe didn't wanna say. Thankfully she hasn't. so she understands now, but at the time she was just her younger sister and you know, maybe that was just kind of the way we approached it too, in our family not making it so much about the illness, but more about what we can do to make her feel better. [00:14:43] Jill (Host): Great. Okay. One more mom perspective question: we hear sometimes from some of the moms of chronic illness patients that the medical system is not always that receptive to parents who are really educated and maybe kind of opinionated and know too much medical language and things like that. Do you feel like you ever paid a price or like you ever had to pretend or anything like that, because you didn't get a warm reception for being such a knowledgeable mom? [00:15:16] Leigh (Guest): Wow, that's a great question. And as you were asking, some memories pop back in my mind. And one other thing I just wanna circle back to, you asked about grandparents and I think that's an important question too, because in our case, our family was very supportive and absolutely believed everything and, you know, knew that this was real and very supportive of all of us. So I think that was important to share. Yes. I mean, I definitely came up against that, especially with having more of a holistic mindset. I don't think some of the doctors were always open to that, especially when it came to the first four years with the foot pain and me asking questions, and especially trying to connect this to a virus or to strep or something else going on in the body. So more of that integrative, holistic perspective instead of just looking at the foot. So sometimes I would ask questions and then I liked how you asked if sometimes I had to almost, I think you said like pretend to not know. I think that's fascinating you ask that because it really brought back memories of really when I did kind of almost became too complacent or too like tired to ask some of the questions that I knew I wanted to ask because I knew what the results were gonna be. And it just, you know, became exhausting, especially right with my daughter there and I'm just protecting her at the same time. There are oftentimes that I think about wanting to, especially the doctor who suggested the boot, there are oftentimes I wanna go back and, you know, educate and say these are some things that were missed. And yeah, so definitely. And then once she was connected with our local POTS specialist, he and his wife were definitely more receptive to partnering, asking a parent, at least from my perspective, me asking questions and talking about the holistic and the natural. He definitely not only supported it, but encouraged it to the point where he even asked me questions, you know? So, I mean, I think that's incredible. [00:17:30] Jill (Host): Great! Yeah. So, tell us more about the holistic approach that you used. [00:17:34] Leigh (Guest): Yeah. When she got diagnosed, we did first try medication because I'm not opposed to medication. I'm open for it, you know, especially if it means maybe short term, and then integrating holistic. So, we tried it. And the first medication, she did not like the way it made her feel. So, we took a little break and then she tried another one, like a week break just to kind of get her system out of the first one. And she gave that one a good…probably three weeks. And she just said she didn't like it. And so that's when I took it upon myself that, you know, and talked to him and he suggested some supplements, which I thought was wonderful. And then I just kind of, you know, went with my knowledge and instinct and research and reading and making connections to what else POTS is in the body like, especially with the vagus nerve and conditioning the body, which is total, they're so exhausted they can't even get outta bed and you're thinking, well, how are they gonna exercise when it's counterintuitive? But I knew that had to be part of it. Now that I'm thinking back, I did present some ideas to my daughter. But she also, so now we're kind of freshman to start a freshman year at this point. I decided that before school I asked if she would be open to taking just a five minute walk with the dog. So, we started off with like a two-minute walk because I believed that getting the body moving in the morning was like just pivotal to having POTS be managed. And so, we did that. She was very open to it. She started to ask if we can walk a little longer. So, we went from a two minute to a five minute, to a 10 minute and with the dogs, and she eventually said to me all on her own, “Do you think that we could walk longer, but then you would have to drive me to school,” because we only had a certain amount of time before she would be able to catch the bus to school. And so, you know, my mind at first was like, okay, I have work. That's the time I start working. And I like shut that off right away. And I was like, “absolutely.” And so, we started this beautiful routine in the morning where we would take a walk and sometimes I'll say, you know, mother/daughter walks sometimes wasn't always the most pleasant thing, but for the most part it was. And there were sometimes I would have meetings, so my husband would walk with her and we would drive her to school. And that really, really helped. That was one of the first commitments that she created. So yes, I guided, but she is the one that really created that routine. We're talking, couldn't even get out of bed, you know, in the beginning of the school year. And so that was one of the first things that we did. [00:20:30] Jill (Host): And how long did those walks ever get? [00:20:31] Leigh (Guest): Oh, 45 minutes to an hour easily. Yeah. And then like exercise grew from there. I mean, she started going to a barre class with me at the gym, you know, doing some exercises on her own. So, really amazing. And she would say, herself, that to this day, that is probably one of the most important things for her - we call it, you know, her name, protocol. And there were times where when we flash forward to like 16 and a half, 17 years old, she kind of went the other way and kind of off all her protocols that we worked really hard to build because that's typical of a teenager, right, to kind of push back on things. And I think she would say she saw the negative effect and like to this day it's very rare she would go without exercise. Yeah. [00:21:25] Jill (Host): Okay. What else was part of your holistic approach or protocol? [00:21:28] Leigh (Guest): Yeah, so definitely nutrition, and that went back to the foot pain as well. I mean, even our integrative practitioner right away suggested removing gluten, which is something that I had suggested, but hearing it from someone else is what really helped her. So eventually she did, and that is not an easy thing to do as a teenager, but it really helped her. She saw the difference. At the time she was a vegetarian. That was her choice. I'm a vegetarian as well, but I'm very open to, you know, my kids trying different things. But I think at the time that might have helped her. She now eats meat, which I think right now helps her. So, different phases of life. But removing the gluten was pretty key because gluten, we know, influences inflammation. And so removing that was helpful. And she really learned how to eat more whole, you know, clean nutrition, so watching sugars. Also with that, you know, not as much processed food. [00:22:25] Jill (Host): Can I ask how she managed socially? Was that a challenge for her at all, or was it no big deal? [00:22:30] Leigh (Guest): Yes. I mean, socially even taking, not in terms of nutrition, socially, it was very hard. This was freshman year, you know, you're starting out high school. That was a huge, huge challenge. She had to really navigate that a lot. Some friends stuck with her and really wanted to learn about, you know, why she couldn't stand up at football games and why she would have to sit down and what was going on with her body. But, naturally so, it's very hard for 15 year olds to understand that. So it was hard, but God bless her. I mean, she just really dynamically stuck with wanting to be social. So for example, like homecoming, she went to homecoming with her friends. But it was a tough year that freshman year, and actually she asked to do her sophomore year at home. She did not wanna go back to school. She missed a lot of school that freshman year, so that was hard. So her sophomore year, and this gets to the her protocol or holistic protocol too, she found a program all on her own, the K-12 International program. She actually set up a meeting for my husband and I. That is how determined she was, and that's what she did her sophomore year and that really gave her time to dedicate to her health. And so, she really dove into the nutrition, the fitness. Mindset was a big, big piece of it at her doctor's office. Her POTS specialist at the time, they did biofeedback and she did intense biofeedback with them. So, learning intentional breathing and meditating, journaling, that was a huge part of it. And I would say that learning to talk to her body kindly instead of, you know, always harping again on the illness, but really talking to her body kindly. That was something she learned really also helped her a lot. So the messages that were going into the brain, which of course we know goes to the rest of the body, the gut-brain connection really helped her as well. And then of course, you know, the nutrition too, and sleep, that's the other things. Sleep. She had a really regimented sleep schedule those first two years when she was diagnosed with POTS. And then of course her junior year is when she kind of just explored things her own way and figured out what worked and didn't work. But sleep was very, very regimented those first two years, and that made a very big difference, along with supplements, using essential oils for her emotional health really helped her as well. [00:25:07] Jill (Host): And I can see how each piece of this helps the other pieces of it. I was interested in how the nutrition and being gluten free and maybe trying to avoid sugar, how that affected a social life. Because I'm always intrigued by how it seems like there's many POTS physicians out there who recommend that people clean up their diet at any age. But then there's also a contingent that says you gotta let a 14 year old just be a 14 year old. And I have always been interested in this because I don't think there's any data either way. And I'm sure that each way works for different people, but I was just wondering from your perspective, what are your thoughts on letting a kid be a kid versus clean up that diet ASAP, because you know you're gonna have to do it someday anyways? [00:25:55] Leigh (Guest): Yeah, I mean I think that's a great question ‘cause that is real life. And that's something else that I like to share with people is keeping this real. There was no like, I mean, yes, she is thriving right now, but I mean this was a journey to get there and there's still moments where, you know, she has to figure out her story. So that was hers. So like I said, those first two years where she was more at home, it was definitely more regimented and easier because I was cooking, you know, I was teaching her, she was very open to it. When then she returned to school because she was feeling better - to traditional school her junior year – that’s when she decided to shift things. And you know, it was hard for me to let go of, oh my gosh, she's eating gluten now. She is, you know, eating the sugar. So that was hard. Talk about like emotions for the parent and learning, not having to let go, but I knew at some point it wasn't worth the battle. Like our relationship was more important to me than that. And I do believe that being social and having those friendships and that community actually activates the Vagus nerve. So maybe she wasn't eating gluten free, but she was happy and she was social. And so, I believe that also contributed to her thriving. So, I think what I would tell other parents is there's gotta be some autonomy in this. They have to own it, and it's okay to not feel well. It's okay that she realized that maybe having too much gluten in a day made her not feel good because then she gets to discover it on her own instead of me constantly saying it. So as hard as it was for me to step back, I did realize at some point that she's happy. You know what? So she's gonna go eat some pizza. Then, although she didn't really eat pizza, ‘cause she is dairy free and she does stick to that, but sometimes she would have a little bit. But eating the other things, if it made her be able to be more social, then that became the priority. And that's where my husband came in too, because he reminded me of that because it is my profession with the nutrition, that sometimes I had to step back and just let her figure things out. And it's still true this day and, and even two years from that point, she's realized and now she has her own apartment, she can cook for herself, that okay, being gluten free probably is the better thing for my body. And how wonderful that she gets to have that empowerment to discover that on her own. [00:28:27] Jill (Host): That's great! So in our last couple minutes, do you want to shout out anything that you wish you had known sooner about this whole process and having a child with a chronic illness? [00:28:39] Leigh (Guest): That's a good question. Let’s see…anything I wish I knew sooner? I think it's a constant learning journey. And so, I mean, even now, especially because that's just something that I enjoy doing as research and learning and reading, there are times that I would say, oh, I wish I knew that, or I wish I had asked this doctor that. But I just tell myself it's a journey and there's a reason that I'm learning something now and that's, you know, I get to share it with my daughter and she's 19, so she gets to research it herself. She does. I would say the one thing is just to always know that you're a partner with your physician and they don't get to dictate everything that if you have instinct on something, that you really do get to speak up. And if they don't respect that, then that's probably not the doctor for you. Because working with a doctor should be a partnership. And there were so many times where I just felt defeated, you know, from some of those other doctors. So that's something I would say. [00:29:44] Jill (Host): And do you think there's any silver linings at all that have come from this whole thing? [00:29:48] Leigh (Guest): Ooh, that's a tough one because I don't wish this upon anyone to go through chronic illness with their child. And with that said, I think that it does somehow, it sounds cliche, but make you stronger. My daughter has always been very positively, strong-willed, very driven, determined, curious, like I said, driving her own path. I believe the silver lining right now that I can see that she's in college is that she’s just living her best life. And because she went through so many struggles, I think that she just won't let anything stop her from doing what she wants to do in life. And I believe she would've been like that anyway, [laughs] but I think having these challenges for the last 10 years, definitely plays a role in that. And she has advocated for herself. She used to do YouTubes to teach other people, and I do believe that one day she'll get out there and also educate and impact people in her own special way. [00:30:52] Jill (Host): Wonderful. Well, Leigh, thank you so much for sharing your story and all of your insights with us. We really appreciate it and I know that everybody listening wishes you all the best and your daughters all the best going forward. Thanks for being with us today. [00:31:06] Leigh (Guest): Well, thank you for having me, Jill, and thank you for giving me this opportunity to share our story. I should say I have permission from my daughter to share her perspective, but also from my perspective as a mother. I appreciate you asking that question. Thank you for all you're doing for the POTS community. It's wonderful. [00:31:24] Jill (Host): Well, the blessing I think, is there's so many wonderful people who have been afflicted by this and so many are chipping in to do what they can, and it really seems to be making a difference. I do feel the progress. So, anyway, thank you. And hey listeners, I hope you enjoyed today's conversation. We'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon. [00:31:50] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) non-profit organization. You can send us feedback or make a tax-deductible donation at www.StandingUptoPOTS.org. You can also engage with us on social media at the handle, @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening. © 2023 Standing Up to POTS, Inc. All rights reserved. [Transcriber’s note: if you would like a copy of this transcript or the transcript for any episode of the POTScast, please send an email to [email protected]]