Episode Transcript
Jill Brook: [00:00:00] Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with a POTS mom. Today we're speaking with Molly. Thank you so much for joining us today, Molly.
Molly: Yeah, thank you for having me. I'm really excited to be here and it's nice to actually be a part of this because I've listened to quite a few, so this is fun to be on the other side.
Jill Brook: Good. Well, without giving out spoiler alerts, we are excited to talk to you because you have more than one set of POTS in your household. And so we're going to kind of talk about that today from, from a mother's perspective. But before we get into all that, can you just kind of like set the scene for us?
Like in the story, introduce us to the protagonists, you know, like who should the listeners know to set the scene?
Molly: Yeah, I am, we're just kind of your typical family. We live in Virginia, [00:01:00] and I have three children. A 13 year old, a 10 year old, and a 9 year old. Well, almost 9 year old, she's 8. And both of my girls have dysautonomia. POTS has become a part of our, of our family at this time. And it's been quite interesting to have, have two children with that at this time.
And one without.
Jill Brook: Yeah. Okay. Can you tell us a little bit more about you outside the context of POTS? Like,
what should people know about you? What do you like to do or what's your personality or anything at all that, that lets us know you a little bit?
Molly: Well, taking care of my family is obviously a big priority, especially now, but I do, I'm a horse person. I love my horse and horseback riding. I would probably spend way too much time with him if I could, but I do have other things I have to do. I love my animals. We have dogs and cats. I was a special education teacher and a reading teacher.
And I worked part time at the school that all my kids went to, but now I'm [00:02:00] home with them. And just enjoy spending time outside and trying to figure out still what I want to do when I grow up, but right now I'm kind of in this holding pattern, but just trying to, you know, take one day at a time.
Jill Brook: Yeah. So has POTS always been in the picture or was there a time that your family was pre POTS? And if so, when was that and what did your life look like at that time?
Molly: Yes, there's definitely a time that we were pre POTS and thinking about this question, it's interesting because I don't want to say that we took things for granted because I don't think that's fair, but we did kind of live the normal life of, you know, three young kids. They're all pretty close together so we were crazy raising them and you know, our, my job was, was great at the time and my husband's was doing well and you know, wellness and health has always been important to us, but it was never like [00:03:00] as important as it is now, I think.
But yeah, we had, we had a, we have social life, we have friends, you know, our, our kids were typical after school things that they would do piano and, you know, running club, and I think we were just kind of an average house. Our kids love school. They have great grades and enjoy being at school, and they always love their teachers and their friends.
We traveled quite a bit. Especially even as COVID kind of thinned out, we, we hit some traveling as much as we could and vacationing, which we were lucky to do. Yes, I feel like we were really lucky to do a lot of things, and that has changed at this point.
Jill Brook: So you had this sort of busy life with sounds like everybody doing great and doing lots of things. What was the first sign that something had changed?
Molly: So my oldest daughter, who's now 13, she [00:04:00] always had a more exhaustive type of personality. Like she would need her rest, her nap time, even when she was 6, 7, 8. So she, her body ran a little bit differently than, than other children and as she started getting older, she would come down with what we thought was like the stomach bug because she would just be sick for a lot longer, like maybe two weeks she would be out and, you know, other kids we would see they get the stomach bug for like 24 hours and they would recover.
So, there's a mother's intuition that I've really gotten in tune with. Something did not feel right. I was like, there was this worry. Something was different about her and I could not figure it out. And the pediatricians were just kind of like, eh, you know, she just gets sick a lot. You know, your kids just get a lot of germs and it, it didn't sit right with me at all.
So early on, she had, she was probably predisposed to something that [00:05:00] gave her POTS or but then we really got into post COVID and things just kind of unraveled from there for her.
Jill Brook: Is it that your family got COVID? Like the story we sometimes hear is that most of the family members recover and then some don't. Is that what happened in your family?
Molly: Great question. No, she never had COVID that we know of and I know, you know, you can still get it. So for her, everything started unraveling kind of post, and I'm going to say some, maybe this is controversial for some people, but I really think COVID vaccine kind of unraveled some things for her. And I'm not saying that it does it for everybody or, you know, everybody's body is very different, but things did drastically unravel for her body at that time.
So, but I didn't know that. I didn't know what it was. I didn't know [00:06:00] why she had this. So the first signs were, you know, she was just anxious, and then she would be sick, and then exhausted, and she could barely make it through her fifth grade day at school. And the doctors were just, I don't know what's wrong.
So I did my own research, and I thought maybe she had chronic fatigue syndrome, and she does. I mean, it's very similar to that. And I made her an appointment at Mayo in 2021, I believe it was, and you know, the pediatrician just told me just to hang in there and wait. Meanwhile, she was laying in her bed sick for two months, like, with really no support from anyone, because nobody knew what to do.
So, not playing the blame game, it's just there was a lack of knowledge And really, there was, there was no information. It was just a really isolating feeling as a parent, that you just can't help your child.
Jill Brook: Yeah. Yeah. And people won't be able to see you, but I can just tell looking at you that [00:07:00] you feel a lot of pain. Just even saying that she spent two months in bed with no support, as doctors were just saying, hang on and wait.
Molly: Hang in there. Yeah, yep, and we put all of our faith in that, that one visit. You know, and I've left my other two kids and, and flew her, which was, flying is very hard on her, as most POTS people know that it's very difficult. And we flew to Minnesota, and they did give her the tilt table test, and that was really hard for her, for a 10 year old to do that, but she was so brave, and she did get a, a POTS diagnosis there, which was helpful.
But basically, you know, they just said salt water exercise was, was a cure for her. And it really was not for her type of dysautonomia. It was not helpful for her. She, you know, has post exertional malaise. And we were just kind of back to a year of being in bed again with really pulling for answers and calling different places.
And I [00:08:00] think I spent that whole year just trying to find someone to help her. So that, that was, it was just a really difficult time and I, I know that there's other parents going through it and I hate that for them. So, you know, which is one of the reasons why I wanted to, to do a podcast and, and to share, you know, what we've been through.
Jill Brook: Yeah. Yeah. And you know, I, I remembered that feeling of thinking you get into some great institution with the best medical care on earth, and you think, okay, this is going to be my day to find out what we can do, and we're going to make progress. And wow, does it hurt to find out that that's not always possible.
Molly: It does. Yes. It was a definite, it was, it was just a really bad feeling. Yeah, that you just, you know, went all that way and spent all that money and you just kind of really didn't get too far. So that, that was, that was rough. Yeah, and it took a lot of you know, it caused a lot of medical trauma [00:09:00] for, for my daughter as well, which, you know, it's going to take a lot of time for her to heal from that.
Jill Brook: Oh. And, wow, and this was all while your other daughter was still not having POTS symptoms?
Molly: Correct, so she was five or six at the time. Yes, she was still not showing symptoms. She and my son were still, you know, a normal average kid. Yes. So I had no worries of them at the time because I was focusing on the older one. Yeah.
Jill Brook: Okay, so then what happened to her to get POTS?
Molly: So just last year in 2023, well, let me back up. I, there was always a fear as a parent that your other child's going to come down with the same thing. So I would pick up on little things and I would get upset and tell my husband, I think something's going to go wrong. I think she [00:10:00] might have the same problems.
And he was just like, no, no, no. You know, you do the best you can. You don't, you can't focus on the but I, but I knew. So in 2023, she started school and got a strep and a COVID exposure. She never had COVID that we know of, but she just never recovered from that time. So, she has a different kind of Dysautonomia or POTS than my older one.
So, it's a different version. She's a little bit easier to handle. She's more of the salt electrolytes movement kind of POTSie and my oldest is more of a fatigue malaise all the time kind of POTSie. So they both look at each other and are like, how come you have this and I can do this, but you can't do that.
So that's, that's been interesting to try to help them emotionally through that. You know, they each can do and things differently at different times and then there's [00:11:00] fear, you know, of seeing how the other one handles it and what they're going through.
Jill Brook: Wow. Wow. So, how has this affected your family now?
Molly: Yeah, it really has put us through a lot and not to minimize what other people are going through because gosh, I know that other people are fighting their own battles for sure. So I try not to make it a pity party, but you know what? Sometimes you just want to have a little one. But it has, it was a really, it still is a really hard time.
I think we have learned to cherish the good moments because there are a lot. And that's probably the most important thing that we've learned. There's a lot of time in our house when things are quiet. And, you know, for parents of three kids, when you're raising them, the house is not quiet. And so we've been used to a lot of noise.
And [00:12:00] lately, you know, the girls, if they're down, they're in the room and they don't want noise, right? You know, POTS, you don't want noise. You've got a headache. So, trying to navigate my son who does not have dysautonomia and he's in the middle of the two girls and he needs like the noise and he needs the the friendships from them is is difficult.
So my husband and I always need to be with him to help him through when the girls are down. So it's really hard for him to be around sick people, you know, because it happens a lot. So as a family, we've really we stay at home a lot, and that's okay. We have to make home comfortable for, for everybody and take turns when we go out.
We have a great sitter who comes and helps out. We found that that's really helpful, that somebody that understands POTS and can be an extra set of hands for us so we can, as adults, get out of the house. So, you have to work through the [00:13:00] solitude, I think. It gets lonely in the house sometimes, and I think that's, I think that's the biggest part of it.
It's just how sick everybody can be at one time, and it's not all the time, but those moments are really difficult.
Jill Brook: Yeah, I, I feel like just within my own body, my feeling is, geez, it's always something. And so I can't imagine having two daughters with POTS, because it really must feel like it's always something. Does it, does it feel like, I don't know. It must be very hard to plan things. It must be...
Molly: Yes, I think the word, I think if I had to describe it and what we can do now in one word, it would be pivot, because we always have to change our plans, like okay, this is what we're going to do, but we know we can pivot, we can be flexible we might just have to cancel and stay home, and that's what we have to do a lot of times, you know, when family comes over, we need to go see [00:14:00] grandparents, we can plan to do that.
But a lot of times my oldest is too sick to get in the car. So one of us will stay with her or, you know, even our beach vacation, she wasn't able to go. So my husband and I had to take turns going with the other kids and that's kind of tears your heart apart to, to miss out on that or to have her miss out on that.
But then you have to be like, I have my 13 year old with me, which is great. You know, some people don't. She's still here. So, focusing on those positive things, it's not always easy, but it's what is the healthiest for us to do, I think.
Jill Brook: For how long have you had both kids in this situation? And the reason I'm asking is because I'm wondering, like, have you had a full year of all the normal activities? Like, you know, winter holidays come up, and summer vacation, and birthday parties, and like, do you mind talking about how [00:15:00] a few of those things have gone, and what you've learned about making the most of them, if possible?
Molly: Yeah, I mean with, with the two girls with their, with their POTS, so, my oldest, who is the most affected, is so independent and so great about letting us go do some things sometimes. And she likes her, she likes her alone time also. I mean, she's 13 now. She's like, Okay, if y'all want to go somewhere, it's fine. You know, she's like, I, I will do my own thing in the house.
So there are times when we might take the other two, my younger and my son out to dinner or something like that. If, because my youngest is able to do things like that sometimes, she's still pretty good, you know, functioning pretty well. So we'll do that and maybe do a little dinner or take them to the pool or something.
So we'll kind of divide up and thank goodness she's old enough to be left alone and [00:16:00] happy with that for like an hour or two. But your heart is still sad, you know, that you're not all together. Or one of us will take my son out and the other one will stay at home with, with the girls. But so for birthday parties, like with my daughter, she's fatigued really easily.
So at last minute, I've had to been like, sorry, we can't make it. And for kids to understand that they can't come to your birthday, I think is really difficult. And I think it's hard to tell a child or describe to their friends, hey, my daughter might be able to come, but she might not. It depends on how she feels.
I mean, these kids are eight. So, a lot of the parents are really helpful with that. Some of them get it and, and help us through that. But we do not have a normal schedule. Like, we know that we can't plan anything for the weekend, maybe one thing, and we work around that. But vacations are a [00:17:00] challenge and any kind of outing is just, it may or may not happen, and we might have to divide up that kind of thing.
So, yeah, we just have to be flexible and know that we probably won't make things, but every once in a while we do, and, you know, we're happy when that happens.
Jill Brook: Yeah. Yeah. Do you find that there's any tricks or strategies you've learned over time that make it better? I mean, it sounds like just being super flexible is the main thing. And I guess you also mentioned finding help, an extra set of hands.
Molly: Yep, yep, finding an extra set of hands. I think preparing everybody for what the two situations are, like, hey, this might happen, or this might happen, we might make it, we might not and then I think that helps the most. And then health wise, telling my girls ahead of time, especially my oldest, because she has a lot of anxiety about going anywhere.
Just kind of preparing her, you know, [00:18:00] Hey, what do you think about going? You know, if you feel up to it, let's do it. And using the right language for them, I think is really important. As my oldest has told me, I don't like it when you say, I can't wait until you can do this, or I hope you can do this. She says that sets her up for failure.
She says she likes it if I say, Would you be able to? And that's been really important for her, the way that we talk to her.
Jill Brook: Wow, that sounds like really smart. I love that self-awareness, 'cause I get that too, that there's yeah, subtle ways that it's, it's a lot of pressure and that's great that at 13 she can verbalize that.
Molly: She's just starting to figure out all of these things in her older age. It's been great that she's gotten older and more mature and more self aware. I think for the first two years, she just shut down. It was just like completely shutting everything away because she had to. Yeah.
Jill Brook: What about like their social lives? [00:19:00] Is that really tough? Like, oh my gosh, to be 13 or preteen? Is there any, I don't know, strategies you've hit upon, or how, how is that happening, or are you lucky that you have introverts as kids, or what, what is that like?
Molly: Yeah, great question. My oldest, the 13 year old, has always been a happy kid at home. Like, even when she was little, she just loved being at home. She could entertain herself. So, it's almost a blessing that she's the one who has that, you know, the hardest, because she can entertain herself at home when she feels good.
The friends part is hard, because for two years, you know, she was so sick she kind of lost all of her friends from fifth grade because they all transitioned into sixth grade. Here we go to middle school. One or two would check on her and, and come by every once in a while and see her. And for me as, as a mom, that was really hard.
Because there was a group, you know, we were like a community, like we all stuck together and then all of a [00:20:00] sudden the community was just like, I was like, where's all of her friends? Nobody's checking on her? Like, and in fairness to other people, you know, you move on and you do other things. But in my mama heart, it hurt that those friends weren't checking on her or me.
So that was hard. But in her teenage years now, she has a, a little more of a social life. She has one good friend who comes and sees her maybe once a week when she feels good, and she has some online friends. Thank goodness for technology and also, you know, not thank goodness, but it does help get her through a lot because she can communicate with other kids her age.
So that, that really does help her. I think if we didn't have the technology, it would be a lot harder for
her.
Jill Brook: Have you found anything, I know you mentioned that for your younger daughter, the salt and the water has been [00:21:00] helpful. Have you found any other things that have made a difference for either child?
Molly: For our oldest, I feel like it's such a mystery. So, we, she has made a lot of progress since last year. She's definitely able to do more, and cognitively, like, she's just more there. She had a lot of brain fog last year, which made school really difficult. So for her, we haven't found like the great medicine that really helps.
We've tried a lot of things to the point where we were driving ourselves crazy. And and I think, you know, she has mast cell, so like anything that we kind of throw at her can, you don't know what it's going to do, right? I think her maturity has been one of the greatest things that has helped because she's able to take care of herself a little bit more and listen to her own needs.
Also the anxiety piece, she's able to get a hold on now from from all the medical trauma. [00:22:00] I think she's getting more of a grasp on that and that has helped learning to like journal a little bit, take some walks, things like that. So it's a very slow process for her. For my youngest, she's more a pacer.
She just needs to pace herself right now, which is hard to tell an eight year old not to, you know, go to a party with your friends, or not to go swimming, or not to go out and run too hard. So that's difficult, is to tell an eight year old not to do too much, because she's either running or she's laying.
But she's a little, like I said, a little bit easier. So it's just over time, she'll learn to advocate for herself, I think.
Jill Brook: So for parents who are in a similar situation, but maybe earlier on the journey, can you talk a little bit more about what you just said about you mentioned having tried a lot of different things for your older daughter and you were maybe driving yourselves crazy with it because I think, I think that's some people where their ears are perking up and they're saying, wait, what, [00:23:00] what is this now?
Molly: Yes, about trying different things. So, I think my advice on that would be is to just do one thing at a time. And know that this is going to take time, and I think that's the hardest thing for a parent to hear. You know, especially for a kid who's not feeling well. You want it to speed up, like you want to give them the magic pill.
Right, so I think just to take your time, do your own research, but don't go down the rabbit hole. Like you got to stop yourself from googling too much and be kind to yourself on that one because I mean my husband's caught me up at night like on the computer being like, you know, how can I help her?
Molly: What do I do? Just a really helpless feeling. So I think taking a breath and just Yep, one thing at a time. Know that eventually something's going to work, something's going to help. Doesn't mean that you're [00:24:00] going to find the cure, but there are ways to help and, and you'll get there. Just don't panic. I think I go through lots of moments of panicking and it just, you know, it only makes everybody else panic, so.
Jill Brook: That sounds like a lot of pressure on you. Wow. Have you found good local or non local doctors who are really with you every step of the way helping with this? Or are you feeling more on your own? Are, are their pediatricians supportive? Do they know what POTS is? And do they know what Mast Cell Activation Syndrome is?
How much support have you had that way?
Molly: Yeah, stop me if I go too far with this. There's a lot of information from all the time that we've spent doing this. Pediatricians, no, I have not found one yet that I feel is supportive. That I haven't had to, that I haven't walked out feeling like, oh, you know, I feel like they got it. So no, I haven't found that yet, especially, you know, locally.
I [00:25:00] have a decent team like her cardiologist is pretty supportive. I couldn't be where we are today without him. He's the first one who said, she just needs to rest. And that was just like the best thing I'd ever heard because nobody would acknowledge that she needed to rest.
Jill Brook: Wow, just that simple thing is so hard.
Molly: Yeah. Nobody wants to tell a kid to rest. It's just weird, and everybody wants to tell them to get up and move and, you know, to go be happy, and nobody really got how sick she was except for him. He was the first one. So I turned to him for all of the school notes anything I need to back me up, he will pretty much help me with that.
And he was the first one who diagnosed my youngest because that still took like nine months of me fighting other doctors, even though I was like, hello, like her sister has [00:26:00] this. And like, I know what I'm doing kind of like, can you believe me? So he was the first, as soon as I talked to him about her, he was like, yeah, let's see her.
She's definitely probably got it. And you know, it's not like that was good to hear, but it was a relief because I knew that's what it was. Also we have a great functional medicine doctor, which is, after we kind of exhausted everything that we could, we, we did find one that treated children, which that was really hard because I couldn't find one that treated kids for a really long time.
And he's not even in our state, but he sees us virtually. So he was the first one who really found something in her blood work that made sense of why this happened to her. And we had never had that before. Nobody ever tried to figure out why. And as a parent, you want to know why your kid isn't feeling well, not just band aid it. Yeah, but nobody really understands mast cell. I've kind of had to talk to doctors about [00:27:00] that and just say, well, just try this, please. And they're finally just like, okay, we'll try it. Yeah, so it's, it's a lot of advocating, which I'm not great at, but I've gotten a lot better.
Jill Brook: Wow. Are there things you wish you had known sooner?
Molly: Yes, that's a great question. I think I wish I knew the doctors, and I don't mean this in a mean way because we need doctors and I'm not putting a negative spin on it, but it kind of sounds like it. I'm just trying to say it in the best way I can, but the doctors don't always know what is best for your child in a certain situation. Trust your intuition, I think, is the best advice I could give. I just didn't always thought listen to the experts, right? They're, they know everything. So for me, I just wish I wouldn't have spent so much time listening to them before I made my own decisions. Yeah. [00:28:00] Just to spare my child some of the, the trauma that, that she had to go to, go through.
Jill Brook: Yeah, yeah, you had mentioned that earlier, that it's going to take a while, especially for your older daughter, it sounds like,
to undo some of the medical trauma. That sounds like its own...
Molly: It's a whole separate piece. Yeah. Yeah. It really is. She's gone through a lot of people not believing her and you know, when you're nine at school and you say you don't feel well, if you don't have a fever and you don't look sick, you get sent back to class. And I think this all started, you know, right when she was finishing school and she can remember, you know, being at field day.
That's where we go outside and it was hot. She was like, Mom, I just felt like I was going to pass out and my girls aren't like ones that pass out unless they're really sick. And she's like, my teacher was just like, well, just go sit over there. And, you know, and it's not the teacher's fault. The teacher didn't know, [00:29:00] but for a kid to, to sit through that misery day after day, because she just didn't know what was going on with her body.
I think she's having to, to do a lot of, of work to trust her body again and to trust other people.
Jill Brook: Oh boy, can we talk a little bit about you? Because I'm guessing that there are parents out there who are listening and are maybe beginning this journey or they're pretty far into this journey. And I mean, we hear about it, sometimes we get emails, but how, how do you cope? How do you take care of yourself?
How do you, it sounds like you, you have a strong marriage. How do you, how do you take take care of all that stuff well, I mean, I can just tell by your body language that this is so difficult and so painful and you have a lot, I think, of maybe stoicism and I think you're not like [00:30:00] making a big deal of it right now.
But to me, it looks like this is so painful and so difficult, as it would be, but, but how, how are you doing? Is there stuff you can do to cope?
Molly: I have to admit, like, to parents, I probably do cry at least once a day, and that's okay. You just, sometimes you just have to. In the car is a great place to cry for me because, you know, you can have music, you can play your sad songs, or you can, and then you can prep yourself for a happy song. So you just do what you need to do.
Yeah, I think for, for me, I have a great counselor. I think that's really important. No shame in that, that's for sure. And I have a small group of friends who will ask about my girls, and that's important. My, my friends are also goofy, and we all like horses together, so it's very therapeutic that I get [00:31:00] time with them.
Not a lot of time, you know, obviously as we'd like, but we do get some time. And then getting outside is really helpful. For me I do have a really good marriage. I feel lucky in that sense, and I know that some parents are single and doing this on their own, and I can't imagine, but I know it can be done. So, I think also talking about it, and I will tell parents out there, not everybody wants to listen to it, because sometimes it can feel heavy, and it can feel sad, and also nobody really understands. I have one mom who I talk to occasionally and she says, Molly, unless you are in this with your children, she's like, nobody's going to understand it like we do.
And, well said. You know, and it's not excluding other people, it's just, it helps to find other parents going through this. It really does. Cause they get it. And it's really hard to find, so I found some through [00:32:00] Facebook and some just by talking about it or, you know, that kind of thing, but I find it really helpful.
Jill Brook: Yeah. You know, I'm going to give a quick shout out to a Facebook group called POTS Ability Parents.
Molly: Yeah, yes, I'm a member of that as well.
Jill Brook: Okay. That's the best group that I know of. Do you have any other resources that you know of to tell other parents about.
Molly: Well, you know, the Standing up to POTS and anything on Instagram that I can find sometimes has funny memes on it and Dysautonomia International does a pretty good job of supporting and advocating. I think I went to the conference last year and I found that really empowering as a parent, you know, my daughters couldn't go, but I probably wouldn't have wanted them there anyways.
It was good for me, I think, to do that. So, you know, and, and just being, talking about it and making other, helping other people become more aware that this is real and that this exists is [00:33:00] helpful for me, and I'm probably sometimes annoying that I post so many things, but whatever, you know, it is what it is.
Jill Brook: Can I just ask, do you have any signs of POTS or does your husband
or do you have a feeling that this is like a genetic thing or anybody else in your family or you think you just got unlucky or?
Molly: I, I wish I knew the, the exact answer. I myself don't, I mean, I have, I have Hashimoto's, like I have some thyroid problems, but I don't, so I do understand fatigue to some extent, which is good, because I probably wouldn't understand it as much, but we have some family members that have like a little bit of tachycardia or like, you know, if they stand up too fast or have the fainting episodes, but nothing severe like this.
And we did go to a geneticist, like we did have myself and my husband and my oldest, but nothing came up, which is good, I think, but I think there's still more research to be [00:34:00] done to figure out why, why we have been hit so hard.
Jill Brook: Yeah. What do you wish more people understood about POTS?
Molly: Yeah, I wish that they understood that it's such a broad term and it can be so many different things. It can be, my oldest is just so severe and when people say POTS, they're like, Oh, you know, she needs salt or she passes out and I have to explain it, which is I'm happy to, but I just think it's important to know that it's dysautonomia.
Like it's a dysfunction of your autonomic system, which controls your whole body. You know, it's nausea, it's for some, not all, not all headaches, migraines. It's, it can be quite severe and a lot of people know that, but not enough.
Jill Brook: For sure. Anything you wish more doctors understood about POTS?
Molly: Same, well, that it's pediatric too. I, [00:35:00] I can't, I have a really hard time finding people that acknowledge this happens to children.
Jill Brook: Yeah, yeah. And so, has anyone given you any idea about what to expect over time? You know, I guess an 8 year old with POTS is a very young POTSie.
Molly: Yes, so I'm always finding things to try and do it to answer that question. So I've got her on, I've got my youngest into like some long COVID clinic things coming up to do some treatment for that. I saw a special in the news, so I'm just like, I'm into everything that I, that is non invasive for them that I can try without traumatizing them.
And then my oldest. I think it's just, we're at a standstill right now, trying a couple of things. And it's just, it's such a wait and see, which is so incredibly hard. But you know, at first the data came out saying that children tend [00:36:00] to pop out of this after puberty, but then like the, now the newest research is saying it's kind of a lifelong thing that they learned to deal with.
So I just stopped listening to that and just said, well, I'll just figure it out.
Jill Brook: Yeah. Yeah, you know, I have been also looking to a lot of the long COVID clinics and long COVID protocols and what I actually really like about them is it seems like some of them have done a great job coming up with treatments to try that are kind of like healthy anyways. So that's sort of my new mantra for myself is I'll try stuff if it is, you know, just kind of a healthy thing to do anyways.
And, and they're coming up with a lot of those things.
Molly: Yes. Yes, good for you. And, yep, I mean, I have a basket of vitamins that, like, you know, and I'm writing everything down of what works. So, and vitamins hopefully, you know, aren't, aren't hurtful. And there's there's always new, new research coming out. And that's what's keeping me going, I think, and probably you as well.
Yeah, that you're just [00:37:00] always, you're not giving up, you know, things can get better.
Jill Brook: So is there anything that your family can do for enjoyment together, even when your daughters are pretty POTSy?
Molly: Yes, yes, I was thinking about this question and this is just this year because last year we weren't able to do this, so it means so much more, but at night, night is a better time for my oldest because, you know, the sun is down and it's kind of a nice temperature here in Virginia. It's not so hot but we've been going outside at night and just
standing out in the middle of our road and in our yard and just kind of under the moon and we've all just kind of enjoyed that time. It's been so lovely to have all five of us together, like my youngest might ride her bike and my son might throw the football, he's got a good glow in the dark, and my oldest is just out there with us and it's a lovely time for all of us.
Jill Brook: Oh, that's so nice. And is there anything else [00:38:00] that you would say to other parents, just as a message, as advice, as invitation for help. I mean, anything, anything at all you'd want to say?
Molly: I know, there's so much, and it's so hard to say it all in one sitting, so the best I can say is, I'm happy to talk to anybody about our situation at any time, to help. So I think finding your, your village, and by village it might be like one person, is, is helpful. And just know it's all trial and, trial and error right now is what it seems like to me.
But just savor those, those little moments each day and do not compare your life to, to other people's, which, you know, is a good thing for all of us to do. Just, you know, enjoy what, what you have.
Jill Brook: Yeah, yeah, no, that's beautiful. Would you be up for ending with a little levity in the speed round?
Molly: I will try my [00:39:00] best.
Jill Brook: In your family, what is the favorite way to get salt?
Molly: Lays potato chips or olives.
Jill Brook: And what's the drink of choice for hydrating?
Molly: Water with lemon.
Jill Brook: Can I ask how many doctors you guys have seen for POTS?
Molly: A lot. A lot.
I don't know exact count, but a lot.
Jill Brook: Have you or your daughters met other patients face to face?
Molly: I have. My daughters have not.
Jill Brook: Can I ask for one word that describes what it's like living with chronic illness in the house?
Molly: Interesting.
Jill Brook: That's a nice positive spin. What's some good advice anyone ever gave you?
Molly: You can't change the way that others are feeling about what is going on in your life. You just have to carry on and you can't make somebody else feel what you're [00:40:00] feeling.
Jill Brook: What is something small or inexpensive that brings either you comfort or joy or your daughter's comfort or joy?
Molly: Laughter. Hearing them all laugh together.
Jill Brook: Who is somebody that you admire?
Molly: Oh, my oldest daughter.
Jill Brook: What is something you're proud of?
Molly: Not being silent. Trying to find answers.
Jill Brook: What do you think is the toughest thing about POTS?
Molly: When they're missing out on activities, I think. When your children are missing out on things.
Jill Brook: Is there any parting words you'd like to leave us with? We really appreciate everything that you've shared and I know everybody listening is pulling for you guys.
Molly: Yeah, we have enjoyed this and I think, you know, I know my daughter would love to talk too. I think it's, it's, you know, just don't stop trying but also be, be kind to yourself is, is a big one, [00:41:00] especially as a parent.
Jill Brook: Yeah, yeah. Well this is, this is great advice and I know, I know that we're going to get a lot of emails thanking you for sharing your experience. And so we hope it only gets easier for all of you guys going forward, but
but thank you for sharing this today.
Molly: Yes, it's been so much fun. I've been happy to do it. Thank you so much.
Jill Brook: Thank you. And hey listeners, we hope you enjoyed today's conversation. We'll be back again next week, but till then, thank you for listening, remember you're not alone, and please join us again soon.
