A Hair Loss Journey with a Fairytale Ending: Stephanie’s Story

Description 

In this moving episode of the Skincredible Podcast, Dr. Lisa Swanson sits down with Steve and Katy to share their daughter Stephanie’s journey with alopecia areata. They chat about what it was like to notice the first unexpected bald spot at age two, about navigating treatments, fears, setbacks, and ultimately finding hope.

These parents open up about the emotional toll of watching their child lose her hair, the uncertainty that comes with an autoimmune diagnosis, and the difficult decisions involved in starting advanced treatments like JAK inhibitors at such a young age. Along the way, they discuss the realities of parenting through chronic illness, the anxiety fueled by internet misinformation, and the importance of finding trusted medical guidance.

Most importantly, this episode highlights Stephanie herself. She is a resilient, joyful little girl whose confidence and strength remind us all that we are so much more than our appearance.

This conversation offers encouragement, practical insight, and reassurance for families facing alopecia areata or any chronic childhood condition. There’s emotional vulnerability and hopeful breakthroughs, hopefully helping others who are struggling feel less alone in their own journey.

Topics include:

• Understanding alopecia areata in children
• The emotional impact on parents and families
• Treatment options, including topical therapies and JAK inhibitors
• Managing fear, uncertainty, and setbacks
• Helping children build confidence and resilience
• The dangers of internet misinformation
• Why support, communication, and hope matter so much

Keywords

Dermatology, Hair Loss, Alopecia, Alopecia Areata, Alopecia Totalis, Alopecia Universalis, Diffuse Alopecia, Loose Anagen Alopecia, Traction Alopecia, Hair, Skin, Skin Expert, Dermatologist, JAK inhibitors, Minoxidil, Oral Minoxidil, Allegra, Pulse Prednisone, Prednisone, Olumiant

Links, Attachments

NAAF: https://www.naaf.org

Chapters

00:00 Intro & Welcome

00:44 Discovering Stephanie’s Alopecia Areata

03:00 Initial Reactions and Treatment Options

04:26 Three Potential Alopecia Areata Courses

06:00 Prednisone, Topicals, Oral Minoxidil, Vit D, Allegra

07:00 Discussing JAK Inhibitors: Olumiant

11:30 Stephanie Starts Olumiant

14:14 The Emotional Process of Alopecia

16:30 Stephanie’s Tips on Swallowing Pills

19:00 Stephanie Gets a Haircut

20:45 Parents’ Experience As Hair Grew Back

26:00 Set Backs During Therapy

31:00 Uncertainty, Off Label Use of Medication

33:30 Combating Online Misinformation

34:45 Advice From Parent to Parent

40:45 Writing Your Concerns Down

42:30 Stephanie’s Advice For Other Kids

43:40 Thank You & Goodbye

The information shared on this podcast is for educational purposes only and is not a substitute for personalized medical advice. Always consult your  physician regarding your health.

Transcript

SPEAKER_00 0:04

Welcome to Skin Credible, where we tell you what you should know about your skin and how to blow. Because your skin's incredible.

SPEAKER_01 0:16

Hello, everybody, and welcome to another amazing episode of the Skin Credible Podcast. I'm your host, Dr. Lisa Swanson, and today I have some very special guests with us here in the studio. I want to introduce everybody out there to Steve and Katie, the proud parents of little Stephanie. Hi, guys. Thank you so much for coming on. Thanks for having us. Yes. I was so excited that you guys were willing to do this because I think your story, Stephanie's story, is so powerful and something that's so good for other folks to know about that are out there that might be going through the same thing or know somebody who's going through the same thing. So I'll tell the story of how we all first met. So you guys and I met back in April 2022. So it's been a little over four years ago. And Miss Stephanie was two years old. It's hard to imagine all that time has passed now watching her grow up through all of this. But you guys came to see me because you had noticed something on her scalp. Tell me about what prompted you to come see the dermatologist.

SPEAKER_02 1:26

Oh man. Um, well, it all started. We went to the zoo, and it was just one of those moments I was just looking down at the top of her head, and we're just walking. She's in the stroller, and all of a sudden I'm like, wait a second, just got a big old bald spot. Like, what you know, she'd always had those little pigtails and everything like that, but right in the center of her head. Yeah. And so that night I got home and he was working, so I told him about it. And we were kind of just after bathtime just going through, and then we noticed all kinds of spots everywhere, but very distinctly, not just like a you know, pigtails are too tight kind of thing. Yeah. Ended up going to her pediatrician. And I always thought this was kind of funny. He's like, Let me go get my dermatology textbook. He's like, I'll be right back. So he's like, I'm pretty sure I know what it is, but I just need to see the pictures. And so he went and checked, and he's like, I'm pretty sure this is alopecia. I'm gonna refer you. Yeah, we need to send in a referral. So yeah, that's kind of that's how it all happened.

SPEAKER_01 2:18

Yeah, yeah. Nobody else in your guys' family had dealt with anything similar or anything like that.

SPEAKER_02 2:24

No females.

SPEAKER_01 2:25

I mean some male.

SPEAKER_02 2:28

Sure, sure. Yeah, yeah, yeah. My dad, my brother, but no, no, none of the girls, no. So it's very out of left field.

SPEAKER_01 2:34

Yeah. And some people even wonder like, did the child get their hair pulled? Yeah. You know, like did you know, did somebody at home or at school like accidentally pull your hair and everything like that? And then especially when you find more patches, you're like, okay, that's probably not the explanation. Yeah. So you guys came in and I told you guys it was something called alopecia areata. And I told you a little bit about it, you know, an autoimmune condition causes these patches where the immune system has attacked the hair follicles, and so the hair falls out. And we started some topical medicines that day. What were your guys' initial impressions? Kind of hearing the diagnosis, starting the treatment plan. Can you guys think how you felt four years ago when all of this was originally discussed?

SPEAKER_06 3:21

I just remember being really confused, um, you know, and just kind of skeptical, like And we we uh had a friend that their daughter's going through the same thing, and we had met, and I was like, oh boy, this can be a life-changing event. I was kind of really concerned just because you know, you look at your kid and you're just like, Wow, yeah, how do we how do we process this for now?

SPEAKER_01 3:46

Yes, yes. So and and I too know your guys' friend who who has gone through this and and she has the form of alopecia where it's alopecia universalis, where it's affected all her hair. And so when that is the kind of example that you guys know about, that can be very scary when your little girl gets diagnosed with alopecia ariata, and the only example that you've known is this one other little girl, and you're like, oh geez, is that is that gonna happen to Stephanie?

SPEAKER_02 4:22

Right.

SPEAKER_01 4:22

Yes. Usually I like to tell families when I make the diagnosis of alopeciariata that it can take three potential courses. One potential course is that there are some patches and then it gets better and it never happens again. Second possible course is there are patches and then they regrow, and then down the road there are patches and then they regrow and it kind of cycles. And then the last path is where it progresses to loss of all the hair, either on the head or everywhere on the body. And I warn people that that's less than 2% of all patients with alopecia areata. But when you Google alopecia areata, those are the pictures that you see. And not only did you guys have to potentially deal with pictures online, you also had this friend of the family that had gone through it that was manifesting in that way. So there was probably a lot of fear, anxiety, uncertainty. Yeah. Yeah.

SPEAKER_02 5:10

All of the above.

SPEAKER_01 5:11

All of the above. Yeah. Yeah. And then we started some topical medicines, which can work very well for young kids. I find that there are a lot of kids out there, you know, listeners, if you're dealing with this, a lot of kids actually do really great with the topicals. But Stephanie did not improve as much as we'd like. In fact, she had progression of the alopecia areata, and eventually it started even affecting her eyebrow. So we did get a little bit more aggressive with our treatment. We started something called pulse prednisone, where she took like a big dose a month of prednisone. And we also did some vitamin D and Allegra. This was four years ago, too. I even had forgotten about that, that we had gone through all those steps. Uh, spoiler alert, they weren't successful and we ended up moving on. But what were your guys' impressions of that treatment? Sometimes kids get a little crazy on the pulse prednisone. I forget if Stephanie reacted that way.

SPEAKER_02 6:02

She didn't.

SPEAKER_01 6:02

Okay. Okay.

SPEAKER_02 6:03

I think we only did it for a couple of months. Okay. And then we ended up not doing it. And then during that time, I was pregnant with Sophie, so we couldn't do the topical monoxidal. Yeah, yeah, yeah. Because you'd have to glove up and everything. So she didn't do, like I said, she we did we tried topical steroids, I believe, as well. Yeah. But she did well with when she started the low dose oral monoxidal. We started to see the little um, you know, those fine follicles kind of start popping up again. So that was successful. Uh but then yeah, I just I forgot all about the vitamin D. Right. Like on the Allegra.

SPEAKER_01 6:36

Allegra. Yeah. Both of those things, you know, vitamin D, there's been two small studies showing benefit. Allegra, there's been two small studies showing benefit. And so they they're two treatments that I'm not sure how convinced I am of their efficacy, but they're so easy to try. And so if you're if you're doing a little bit of this and doing a little bit of that, you can throw in a little bit of that and see if it helps boost the response sort of situation. But we still weren't making any major headway. And while we had progressed through this journey, I had mentioned to you guys about a class of medicines called the Jack Inhibitors, which when we first started seeing each other, you know, often I mention the Jack Inhibitors just to give people hope that even if this doesn't go the way we hope it will with the topicals or with the vitamin D or with the Allegra, there is this class of medicines that is offering hope when there didn't used to be hope for people with alopecia ariata. My intention is in presenting that is kind of keeping that hope alive. So families know, okay, if if this just is a runaway train, we at least know this exists. And I hope that gives people some peace of mind, just knowing, like, okay, if if it's the end of the world, like we can, we can go ahead and do this. And after we weren't having much success with the other treatments, we talked again about starting a Jack inhibitor, specifically one called Alumiant. I remember there being a couple of visits, even where like we were kind of we were considering it, but we weren't quite sure. And we were thinking about it, we were kind of marinating with it. And eventually we decided to go ahead. What was that process like for you guys? Like, what were you struggling with as you tried to determine if you wanted to take that step for little Stephanie?

SPEAKER_06 8:29

So I I don't know much about Jack Inhibitors until you started mentioning it. So I started doing research. Katie here, she's a RN registered nurse, and so she was just like, well, there's this, this, this, and this uh with it. So I kind of deferred everything over to Katie to start making those types of decisions because again, not in the medical field, I didn't really understand the pros and the cons of the jack inhibitors, I guess you could say what you indicated was like, you know, all these other stuff we were trying, it felt like okay, we're just we're we're slowly just kind of working through this process, and it wasn't going from zero to a hundred like that. It was more of like, hey, we're just gonna gradually see how this goes before we move to the next, which uh for me it kind of gave me time to kind of process a little bit more. Because like you said, you were mentioning jack inhibitors in earlier visits, but it wasn't like a right here, right now. Right. It was like possibly down the road, we're gonna do this. So it gave me time to kind of process a little bit more. But as we got to that point of like, hey, this is something that maybe we should think about now. Uh I think that time frame of just several months of just kind of thinking about it and having Katie kind of tell me about the pros and cons of it was beneficial.

SPEAKER_00 9:42

Yeah.

SPEAKER_02 9:42

But I think it's a big decision. It is. The hardest thing for me is just I mean, it's immune suppressant, right? For for a young kid. And it's every kid at this age is just boogers all the time, right? Yeah, yeah. And just wondering, is she gonna come home from pre-K just chronically sick all the time because we're we're suppressing it? And then just the long term, you know, we're pulling labs however often at the beginning, checking her lipids and her liver panels and everything to make sure that everything is still, you know, occasional and and functioning well with this medication on board. And that's just a lot in my mind. Do I want to have my kid have the most happy, healthy, normal, you know, not stand out in any kind of way, kind of childhood? Of course I do. But at the same time, do I want her to potentially be taking this medication and have side effects? That's a really fine balance. But in the end, we started taking it and had really good results. And this girl is tough as nails. The first blood draw was not her favorite experience. And then every time after that, she just pop her elbow out and she's like, All right, and she'd watch it go and she'd go, ow. And she goes, Oh, it doesn't hurt you more. Oh my gosh. And then they would like the the phlebotomists at St. Luke's would give her like three or four stickers. Like, You're the bravest kid. Yes, yes, yes. So after that, it was her special thing. She got stickers, and then I'm pretty sure we got McDonald's with that afterwards. I love it. I love it. But just the biggest setback, I think, or in my mind was side effects. Yeah. You know, and just long-term, is this gonna be more helpful or potentially not?

SPEAKER_01 11:20

And when we made the decision to to jump on the Jack Inhibitor, she was three almost four years old. It was like right before her fourth birthday that we did that. What did you guys observe with her in terms of how she was kind of experiencing and moving through life with the alopecia area? Because that's right about the age where, like, like I feel like if they're under three to four years old, the kids don't even really notice, you know? And then once they get right around four and like kindergarten is approaching, I feel like that's when they start to observe these differences between themselves and maybe their preschool classmates or other kids in their age range might start asking them about it. So, what did you guys observe for little Stephanie at age three to four as she was moving through the world with alopecia areata that was progressing?

SPEAKER_02 12:16

I think we got honestly really lucky. She had been at a Montessori um with the same group of kids for a couple of years. I mean, and so they knew Stephanie with hair and they saw Stephanie lose her hair. And she was still stuffed. She was still best friend on the playground and just that silly girl. And um, there was really no big um shift in her immediate environment at school when she started losing it. We did have somebody make a comment, like, I think we were going to church, and I mean, Steve obviously doesn't have hair, and Stephanie at that point didn't have much hair, and somebody's like, Oh, somebody got her daddy's hairline. And I was just it was an adult. And I was just like okay. Of all the places, of all of the things to say, maybe think that one through. But yeah, it wasn't it wasn't from kids, it was from adults, adults, you know, and that was really kind of disheartening because kids are so kids are chill. I mean, if they see it happen and they know like she's not sick, it's just the way her body's acting, yeah, then that's just that's life, right? Yeah, and they're just just they roll with it. Yeah, every day is normal, right? And it's the people on the outside just having comments. That was the hardest part for me. Yeah. So yeah.

SPEAKER_01 13:29

I read something on the internet or of this woman who was sharing a story of she has alopecia universalis. And one day she opened the door, somebody was delivering a package or something, and the person delivering the package asked her if she was going to the pit bull concert. Because apparently big pit bull fans will like dress up as him when they go to the concert and like do a shaved head. And this was just like a stranger at her doorstep, and she's like, No, it's alopecia, you know. I think it can be helpful for kids to maybe know how to explain it to others. Did you guys tell Stephanie anything to say to other kids if they asked?

SPEAKER_05 14:14

I did.

SPEAKER_06 14:14

Yeah. Because I it's uh it can be an like an emotional process through it. So I think Katie kind of took took the lead on how to address others when it came up.

SPEAKER_02 14:24

What did I tell you when this all started happening? Do you remember?

SPEAKER_04 14:30

I told you if your hill falls out. You forgot?

SPEAKER_02 14:38

You forgot. I said I just told her like this is got this is how God made your body. Yeah. You know, this is something that we can't control. This is the way that your body is gonna work with your hair or not work. We might not be able to control it forever. We might get it for a little while and it might come back and you know, and then I kind of just told her the other day, you know, when this podcast idea came out, she's like, Mom, do you think my hair is gonna fall out again? I said it might, but I was like, I guess if your hair falls out, you're not gonna be good at baseball anymore, huh? Yeah. You won't be able to hit it across the yard. She's like, Yes, I can. Right? I was like, I guess if your hair falls out, then you're not gonna be best friends with those kids at school anymore, huh? And she's like, Yes, I am. And I was like, Okay, so what does that tell us? Right. We're not defined by our hair. Yeah. Like you're still an awesome kid and you've got amazing potential, and that's you know, the sky's the limit, really.

SPEAKER_01 15:25

I sometimes I hear from the little girls going through the alopecia process about Disney princesses. Because all the Disney princesses have beautiful, long, magical hair. She's not a Disney princess.

SPEAKER_02 15:38

Okay, okay, yeah.

SPEAKER_01 15:40

She's you're a Bluey girl.

SPEAKER_02 15:43

She likes Bluey, she likes Neighborland Pirates. I mean, we watch some we watch some movies because Little Sister is definitely a Disney princess girl. Yeah. Um, but uh that was never really her concern. Yeah. Yeah, yeah. She's she's relatively chill, this girl.

SPEAKER_01 15:58

Stephanie, who's your favorite on Bluey? Do you like Bluey the best or Bingo or Muffin or Mom and Dad?

unknown 16:05

Bandit.

SPEAKER_01 16:06

Bandit. You like the dad the best. Yeah, he's pretty cool. He's he's a pretty fun guy to play with for bingo and bluey, isn't he? Yeah, yeah. Do you remember when you first started to take the pills? Because you were pretty little, and we were wondering if you'd be able to take the pills. And you came up with a really great way to take pills. I remember you telling me about it in clinics. Do you remember what you did? No. Now it's probably second nature, because this is, you know, two years later, but you put them in yogurt.

SPEAKER_06 16:40

Do you remember that? You said put it on a yogurt, put it on, and then eat your yogurt with your medicine.

SPEAKER_03 16:46

Do you remember? Um, I think.

SPEAKER_06 16:49

How do you take your medicine now?

SPEAKER_03 16:51

Um usually with cheese whole milk.

SPEAKER_06 16:55

Yeah.

SPEAKER_03 16:56

I mean water. Water. Yeah. You don't drink milk. Yeah.

SPEAKER_02 16:59

What do I tell you to do? How do you take it? This morning you had to take it. What do I tell you to do?

SPEAKER_03 17:04

Um stick out your tongue.

SPEAKER_02 17:06

Stick out your tongue. Drink of water.

SPEAKER_01 17:10

Because back in the day when we first started you on this medicine and you took it so well with your yogurt and everything, I started telling other people about that because can you believe that I take care of some teenagers that can't swallow a pill? Can you believe that? And then you were just three or four years old and you were you were doing it great.

SPEAKER_03 17:34

Sometimes I take sometimes um it's really hard to swallow it, but I had a I keep taking water until I swallowed it.

SPEAKER_01 17:41

Good idea. Good tip. Good tip. Yeah. I I think I even made the joke, like, could you hang out in the office and talk to some teenagers for me about how to how easy it is to swallow a pill? Especially the teenage boys. Sorry, Dad, but the teenage boys are the worst. Like drama. Yeah, yeah. And sometimes I want to ask them, like, I assume you swallow food. You know, I doubt you're on an all-liquid diet. And so if you're able to swallow food, you can swallow a pill. But there's so much that's psychological to it. So we went ahead and got you started on Illuminant, the low dose two milligrams a day. And at first we did the low dose oral monoxidyl along with it. It always takes a little bit of time for the hair to grow. But I remember the first visit where I walked in, I think she had been on the medicine four or five months, and there were obvious sprouts. Like it was clear we were on the right course and that the ship was turning around and the hair was coming. And then I feel like it was probably six to eight months on the medicine where I walked in the door and she had gotten this cute little Bob haircut with bangs. And you said, Stephanie, you probably don't even remember this, but I walked in and you said, Dr. Watson, I got a haircut. It was the cutest thing in the whole wide world. And your before and after pictures are just so beautiful. And the smile you were wearing on that day was really, really exciting and cute. And so we were able to get the hair to regrow. And now look at it. Look how long your hair is. You're a Disney princess today, my friend.

SPEAKER_06 19:34

Can you tell Dr. Swanson how much you love to wear dresses? No.

SPEAKER_02 19:40

Two thumbs straight down. On Sundays we get her two. That's hilarious.

SPEAKER_01 19:48

I love dresses. Do you know this about me? I think probably every time we've seen each other, I've been wearing a dress because I like my dresses. They're nice and comfortable. Yeah. But you know, when I was your age, I never wore dresses. I grew up like very tomboy-ish and like was always in shorts and a t-shirt. And yep. And then interestingly enough, when I grew up, I was like the tomboy shorts and t-shirt. My younger sister was like the princess in the big dresses and stuff. And she loved anything that was poofy. Um, and then as we got older, we completely switched. I'm more of a dress pretty, you know, sort of thing. And my sister's more like wearing pants and all of that kind of stuff. And so you never really know what's gonna happen. Maybe you'll grow up and you'll become a dress girl.

SPEAKER_06 20:36

Maybe.

SPEAKER_02 20:37

You think so?

SPEAKER_06 20:38

Is your sister a dress girl?

SPEAKER_01 20:40

Yes, yes. I know this about your sister. Yes, yes. I know what it was like for me that day I walked in the door and she had her cute little haircut, and um, it was just so beautiful and wonderful. What was that process like for you guys? Watching the sprouts eventually become the hairs.

SPEAKER_06 20:58

It's like a s for me, it was like a sigh of relief just because uh you see the change. Yeah you see, like, oh, there is a light at the end of the tunnel. Uh but then at the same time, it's like, is this temporary or is this forever? Right. I think I remember asking you, like, are we this is and you know, you're still like cautious about like this could, it could reoccur, it might not, it could go through seasons, but it was it was good to see just because it was kind of a big side of relief for us, or at least for me.

SPEAKER_01 21:31

Yeah. Which one of you kind of struggled with the alopecia areata journey more? Oh yeah.

SPEAKER_06 21:39

Still to this day.

SPEAKER_02 21:41

Steve's not typically a an overly emotional human, and that's not a bad thing. It's just yeah watching him watch her lose it was very hard. Yeah. Um, because I mean this is his this is his baby. Yeah, you know, Stephanie's named after his mom. Um and so um there's a lot of uh a lot behind that. Yeah. So it's really hard to watch.

SPEAKER_01 22:05

Yeah. And then that's the burden. You know, it's Stephanie's burden and then it's your own burden. And then Katie, it's your burden watching your husband struggle with it so much. And that really adds up to a lot of stress. Yeah.

SPEAKER_06 22:20

Yeah, it's more of like before it all happened. Yeah. Brushing her hair every night. And then it got to a point where it was like, eh, there's not really, you know. And as soon as it started coming back, I got to brush more. Who likes to brush your hair? Who likes to brush your hair?

SPEAKER_02 22:35

No daddy does. I'll do it. Because you got now it's so long, like it gets ratty. Yeah. But it's like it's funny that's like a victory. Yeah. It's almost like you my daughter has long hair that tangles. Like this is really cool. Or like I can braid her hair. Yeah. Um you know little things that you never really think about that you take for granted and then you're like this is actually pretty special.

SPEAKER_01 22:55

Yeah. And then even though Stephanie handled the diagnosis in the original alopecia really, really well and you know things were okay at school and all of that, did you guys see any changes in her when the hair came back?

SPEAKER_06 23:07

I saw much changes because she's just a pretty happy go-lucky girl. You know what I mean? Yeah. I just remember like when we were transitioning from the monastery school to her new preschool, we told her teachers like her hair's short because of alopecia. Yeah. And then that it may come back. It may not, but we just wanted to give the teachers a heads up but I I I don't think she's changed much in regards to that.

SPEAKER_02 23:31

I think she gets frustrated more because it's in her way. Yeah. She always just wants just like mom can I just have a pony please I just want a pony like get it out of my face. Yeah like we can wear it down.

SPEAKER_01 23:39

She's like but I don't want to right right so it looks beautiful today Miss Stephanie. Yes. So pretty such pretty hair. And now at age six is little Stephanie did she just finish kindergarten to um oh my gosh you're a kindergarten graduate.

SPEAKER_02 23:58

That's a big deal yeah did they have a ceremony no they just said it's your last day enjoy your summer yeah yeah 14 smarties 14 smarties like the little candies 14 packs oh 14 of the oh boy 14 individual packs of smarties we're still excited about those that's that's a lot of smarties did you get them because you're just a smartie I wouldn't eat them all at once that would be quite the sugar rush yeah a little at a time maybe if I can have ice cream so I'll maybe dump some in my ice cream what kind of ice cream do you like Stephanie?

SPEAKER_01 24:47

And chocolate chipping cookie dough and vanilla I like all those choices. I bet with the vanilla you add toppings or do you just like straight up vanilla ice cream sometimes we put stuff in it what do what does mom put in hers that you like peanuts peanuts and chocolate sauce.

SPEAKER_03 25:10

Yeah my papa would put peanuts and chocolate sauce with his vanilla ice cream and I will rather have it but my most favorite ice cream is chocolate chip?

SPEAKER_01 25:20

No. Cookie dough no that's your favorite there's another one banana split. Banana what? Banana split banana split ice oh like having a banana split yes yes that was my brother's favorite when we were growing up we would go to Dairy Queen and I always got a blizzard and so did my parents and my sister but my brother always got the banana split. And my brother never got cold headaches. He was immune to that.

SPEAKER_05 25:47

Rude.

SPEAKER_01 25:47

Yeah I know. And so he would just like down this banana split like so fast every single time. And meanwhile we're like just like spoonfuls at a time with our blizzard so that we don't get the cold headache. But I to this day all through med school etc years in practice I have not seen a physiologic explanation for why my brother does not get cold headaches. I don't know. I don't know what it is. Yeah but he was lucky he was lucky yeah well Miss Stephanie has done very well in fact so well on the Illuminate that we eventually stopped the low dose oral monoxidale and just you know have been kind of humming along with the Illuminant. We've had a couple little setbacks recently which I think it's important for the audience to know that that that does happen with Alpiciariata. There will be little blips a lot of times in kids blips are due to you know a child gets the flu or COVID and it's kind of a postviral flair. And typically we can just stay the course and sometimes we'll add in some additional things but oftentimes we can get to the other side of that and and continue to do just as well. But it can kind of wreak havoc on the psyche when you've come so far and like she had been good for almost two years by the time recently when we had the little bit of a setback. How did you guys cope with that? I think mom you emailed me and I was like in clinic or something I didn't get a chance to respond right away. And then like the next day I replied and I think I put in all caps like don't panic and you were like that ship has sailed the panic has set in what was that like for you guys we just recently had on our last visit talks about maybe stopping right we had even flirted with that. Right. Because she had been doing so good for so long. And also there's newer data that with earlier intervention of the jack inhibitor we can maybe kind of turn off the alope shariata and in the grand scheme we fit that criteria for earlier intervention for Stephanie. So we had a talk like maybe we do it and maybe we do it in the summer so in case it flares like we were feeling pretty confident but then a couple new spots appeared.

SPEAKER_06 27:52

Yeah and I was I had noticed like some hair like on her her bed sheets are white so it's easy to see and I'm telling Katie I was like hey I'm noticing this and she's just like it's just normal hair loss. It's fine then Katie kind of discovered the nape of her nape of her and I for me it went all the way back to the very beginning of the a no known certain because my mind goes to worst case scenario.

SPEAKER_05 28:19

Yes.

SPEAKER_06 28:20

And uh and I I hands hands down I'm the one that freaked out more than she did. I I was like okay can we call and get into Dr. Swanson right now and she's just like it's it's another day we'll contact her and we'll go and then uh and then I kept telling hey can you send her an email like I'm just like freaking out. So when she said that that ship has sailed that was I was on that ship. That was I was on that ship.

SPEAKER_02 28:46

They were still on the way and then when you emailed back and you explained it then it's like okay that's okay I'll kind of turn back around but pump the mix a little yeah yeah it I mean she does jujitsu and she had her hair pulled back and I was looking at the nape of her neck I'm like those are spots because oh yeah instead of like a uniform line we've got some very distinct patches on the nape of her neck and so yeah showed it to him and I was like you're right she is losing it's okay. Yeah it's just here I mean I yes went a little crazy and did a scalp check and was just making sure and then she has like a very distinct part so I'm like looking at her part like are we missing hair or is this just you know yeah kind of had a 24 hour like moment and then reeled it back as best I can because again like what do you do? Yeah I can't control it. Right, right. But we can control the way we react because she's very perceptive. Yeah. When I was looking at her hair that night after jujitsu she's like mom why are you looking at my neck and so that's when we started talking about it like hey if your hair stops growing or if it starts falling out again this is what's gonna happen. You remember when you had those spots and we have pictures of her from school yeah the first go round where she has like distinct spots and those are her school photos, you know? Yeah um and they're up on the wall she sees them every day so it's like you never want to not talk about it because the potential is there always. Yeah. We just like he had a moment.

SPEAKER_06 30:09

Yeah she had a sense she's like you need to go to your room like I got like I got grounded like put in time out because I was like starting to freak out and you just getting emotional and she can see it. She can see it.

SPEAKER_02 30:21

So she's like hey you should probably just go take a break yeah we go grab something for me real quick or remember what I said but just give him a moment you know yeah um so it's silly yeah uh but it is okay right now it's slowed down dramatically and uh we did shift up a little bit we went back on that topicals and the Logisolminoxidil thank you yeah the topicals never really work well for her and then I'll be honest my compliance is it's hard mediocre yeah it's hard to at the end of the day we're doing 10,000 things and trying to you know get her a and then little sis who's yes three and a half oh man she's she's my spicy girl so just trying to wrangle some you know feral cats really but everything seems to have slowed down.

SPEAKER_01 31:08

Yeah it's hard it's hard in those moments and I think dad you touched on something that I think is so hard for so many people that when uncertainty creeps in like that's when that's when I think the brain kind of spirals because you're just like oh my gosh I don't I don't know what's gonna happen next. I don't know if this is going to continue to progress. Does this mean the medicine isn't working at all anymore? Does this mean it's all going to fall out? What do we do if that's the case? Because I should have mentioned that like currently there is no oral jack inhibitor approved for a child Stephanie's age. There's nothing officially approved under the age of 12 and our use of Illuminant is is off label, what we call off label, which doesn't mean it's not okay, but it's just it's not officially indicated. And so if that option kind of falls through isn't working like where do we go next? What's our plan? I think having a plan is so crucial. Sometimes it's helpful to know like if this all falls apart, what do we do next? Yes. I I see a lot of patients go through a similar thing. Lope shariata when it happens to you or your child is a traumatic thing. And anytime you witness a backslide you go back to that same mental state where you were the first time it happened and that's a really hard thing. That's a really hard thing. Yeah.

SPEAKER_06 32:26

It's like and part of me was the idea of like just like me I'm kind of you know I got this horseshoe going if I don't shave my head. Yeah yeah and so and from what I've heard and and read it's like oh your hair is always here and so I when she started losing her hair here then I started worst case scenario was like she's gonna go complete this time. Because last time it was the spots. Yeah uh and I said well if she's losing here that means it's all gone. Almost every other hour I was like it's all gone. The internet is a great thing but it is such a horrible thing. I know because then I got on the internet and I started read and there's a lot of good information out there as we know but there's a lot of misinformation right? Yes. And so I started reading this and it was like yep chances of if it coming back a second time and it they're like yep it's gonna be completely forever and it's like man okay I do believe I told you to get off your computer one night.

SPEAKER_01 33:22

Yeah I was like you need to stop yeah oh well and I think that was my major impetus in starting this podcast in the first place was to really combat misinformation because I hear so much of it from my patients. And I feel like I spend a lot of my time just trying to to turn that ship around. And so I wanted to be a force for good putting good quality information out there because what you read about if it happens the second time and everything it it's all like that's not true. That's not true. And um and so I hate that you were sent down that path because already your baseline anxiety about going through all of this has been relatively high. And so to see that information, oh my gosh, that hurts your heart so much. And that's a good perspective that I have I hadn't um latched on to about the back of the head specifically because it is true that with patterned hair loss as we get older and things that that area is usually preserved and that's a completely different process. And so you know um but that's that's good for me to know that's good insight for me to have so like the next kiddo that has loss in that area I might be able to meet that head on with with families.

SPEAKER_06 34:29

Yeah it's trying to essentially make a square shape to a you know circle this is this is related. It's gotta be related. Right. It's this fits.

SPEAKER_01 34:40

Yeah yeah yeah what advice would you guys have for parents who have a kiddo dealing with alopecia areata Oh boy um I mean don't panic right I think that's been easier said than done though.

SPEAKER_02 35:00

Yes I think that's I was gonna say gonna be like the hardest piece of advice that we've been given from you but also again at the end of the day like what can I control right now? Not a lot but my reaction right and just understanding that there are dozens of options of treatments and starting very basic and then progressing up and you know obviously you being here has been such a godsend because um pediatric dermatologists are hard to find and like you know just just having and on that note part of that I think you went on vacation one year for like a couple weeks and I said she's moving she's going somewhere to let's right I had forgotten that you know so in the in the yeah so you know anyways I forgot that was so funny.

SPEAKER_01 35:49

I like I was seeing Stephanie and I I maybe you guys had called in or something and I and I was out and you had convinced yourself I was leaving.

SPEAKER_02 35:56

Yep yep and yeah she's interviewing for jobs she's checking out places to live yeah oh my gosh she's like she's in such d high demand she can go work anywhere like she's not gonna want to stick around here and I'm just like maybe let's just wait and see what I go please um that's so funny I'd forgotten about that. Yeah and I guess the other thing is like don't don't seek internet assistance yeah this is not a quick fix for Google AI. You know this is it's often way more traumatic than it needs to be yeah I mean even as an RN, I mean I I work in I work in a public school like this is not my forte right so just coming in and I had a list of questions. I think either I wrote them out or they're on my phone. But it's just an overwhelming thing like when you're sitting there and you've got all this information like just come in what questions do you have what are you most concerned about? Ask the questions what does it look like six months from now or a year from now and just prepare yourself like if this is initial onset yeah you might see some dramatic loss um and it's hard to watch it's hard to brush your baby's hair and half of it's coming off on the brush not really half but you know yeah noticeably losing hair every time or we get her out of the car seat and it's just caked against the headrest. It's just that's a really really hard experience and just realizing that it comes in phases, right? We're going through some cycles of of hair loss and hair growth and it's gonna take a while. Like this is not a it's not a quick fix. Yeah it's not a fixed right now fixed for everything. It could be you know two years down the line we're losing hair again and that's okay. Now what do we do this time?

SPEAKER_01 37:27

So well and I like your comment on creating a list of questions because maybe that's a good outlet for your feelings and your anxieties and your worries to maybe write those out rather than rather than go on the Google machine so that you can kind of formulate your concerns and things you wonder most about. So at that visit you know exactly what to ask. So maybe that's an outlet for people. Google it's just so easy to be well let's see what Google says but so often it's it it makes you more scared. Right.

SPEAKER_02 38:00

It's a lot of information and you know if you don't have a medical degree and you're looking at this going wait what now or you're pulling up these studies and I don't know what this means. Right. And then just being able to vent off your spouse or your person there were some moments we had some tense conversations because we're at a level 10 reaction and there's nothing we can do and then we just gotta you know vent it out and okay what can we what can we can control and what we can't yeah. And then she's six now and very perceptive and just changing the conversation with her so that she's included yeah we're talking about you but here's what's going on. I I've said this to him a lot and I mean his number one thing is he just wants to protect his babies. That's that's his like number one dad right here. Amazing human my my one thing is like of all the times in in history to have no hair it's okay right now. Right. You know it's not like even 20 years ago when I was in high school like not having hair that would have been you know such a mortifying experience but you look at these kids these days and some of these hairstyles are funky. Yeah or lack of hair they don't care. Yeah and it's normal and then you've got pro athletes that are for the alopecia foundation or whatever just out there and talking about it. And I love it because are you defined by your hair?

SPEAKER_01 39:18

No you shouldn't be there's a Barbie with alopecia areata did Stephanie ever get one of those?

SPEAKER_06 39:24

This is not my Barbie girl okay okay okay gotcha she would have been like cool cool and play the trust yeah yeah yeah Dad what would what would your thoughts and comments be to other parents out there going through this trusting you the process understanding like our different steps to take but again it goes back to the internet is a scary place sometimes and there's just so much out there to process. So easier said than done like we kind of discussed it's just because you want to be in control of everything. You want everything perfect for your kid and it's like what can I do right now to fix this and if I get on the internet it's gonna tell me you know jump on your left foot three times and then you know do this and do that and everything rub some onions on it.

SPEAKER_01 40:06

Right.

SPEAKER_06 40:07

Many many sleepless nights of just going down different avenues of like was it her formula that she took or was it the hair soap that we're using is it you know uh the detergent that we're using that's touching her bed sheets I mean I just had it come to the realization that um there's a reason why we have you're reason why you're here yeah there's a reason why you specialize in this having to trust the process is is uh the hardest thing but the best advice I can ever offer is just yeah yeah I l I love both of your comments.

SPEAKER_01 40:41

I think writing down your questions is so good. Like kind of putting that energy onto paper or in your phone um in the moment that you're thinking about it. I think even just having that down on paper with the expectation that you're gonna eventually talk to your medical provider with these questions and get the answers that you need helps relieve a little bit of the anxiety. And then having the ability to feel relatively organized when you do have your appointment because who knows what's going to be happening. I used to just like if I was going through something tough I would just like write in my journal about it and sometimes just writing it down. Like you'd be surprised how much that helps your psyche. And then getting in touch with a dermatologist or if it's a kiddo, preferably a pediatric dermatologist that is used to treating and tackling these issues and used to using some of these therapies in a younger patient population is kind of aware of the options. Sometimes if you see somebody who only sees adults this can be they can feel they can feel kind of scared and nervous to address a pediatric allopiciary out of patient. And and I completely understand your search for like the thing that like so many dermatologic issues parents go through that and most commonly it's not it's not anything you did. It's not one thing. And in in some situations I wish it were you know if it was the formula okay let's switch the formula you know I wish I wish it were that simple. Unfortunately our immune system can act kind of funny sometimes and can create these issues for us when our immune system is there for good reason but sometimes it's misguided you know and we end up dealing with eczema or dealing with alpesiata or whatever it might be. Now Stephanie this is your moment to shine my friend what would you tell other kids who have alopecia do you think that they should be scared they should be nervous do you think they can get through it yeah and um do you have any tips for them about swallowing pills no use yogurt use yogurt or just do it so you think like other kids who are going through it they should just be able to talk about it with their friends and tell them about what what alopecia is yeah yeah and be confident because like your mom said you're still Stephanie whether you have patches on your hair you're still a good friend for your friends you're still a good student in school you're still a good athlete with hair or without right now you have some beautiful hair my friend and this has been fun to go on this journey together with you guys. Thank you guys so much for doing this I realize it's a weekend. I realize you guys are busy and I appreciate the time you took to be here um and the trust you put in me to we couldn't do it without you honestly guys thank you the next thing that we're planning on doing is making you move next door to us. Yeah if we move you move right yeah I'm in I'm in thank you everybody for joining us for this wonderful episode of Skin Credible. I hope you learned something and I hope you feel inspired and I hope you go out there and you feel much more comfortable talking with folks about alopeciariata. Thanks so much for tuning in.