Follow Your Gut Podcast

Two Years of TSW Hell: A Mother's Journey to Save Her Child

• Juniper Bennett • Season 3 • Episode 110

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TSW (Topical Steroid Withdrawal) is one of those things where you don't really know about it until you are in the thick of it. 

Today you get to tune into a heart-wrenching yet profoundly inspiring interview with our guest Kristi. She is a fiercely dedicated mama who endured an unimaginable journey as her child battled Topical Steroid Withdrawal, or TSW, for two excruciating years.

Kristi's story is one of relentless love, unyielding determination, and sheer resilience in the face of a condition that brought their family to the brink. The pain, the tears, the sleepless nights—Kristi faced it all head-on, refusing to give up on her child. Refusing to crumple under a system whose only objective was to prescribe new and different medications instead of actually healing her child. Today, she joins us to shed light on the horrors of TSW, the battles fought, and the hope that eventually emerged from the darkest of times.

This episode is not just about TSW; it's about a mother's unwavering fight to save her child's life and the strength that lies within us all. It is about taking a really hard experience and paying it forward to help others. I know this conversation is going to deeply move you.

Links from the episode:
Connect with Kristi on Instagram
Women's Gut Rebalance Kit
Children's Gut Rebalance Kit
Balanced Bacteria Skincare Kit


Thanks for listening! I would love to connect with you ♡


Sending love and wellness from my family yours,
xx - Juniper Bennett
Founder of ōNLē ORGANICS

Juniper (00:02)
Kristi, welcome to the Follow Your Gut podcast. We are so honored to have you here and to be able to hear and learn from your experience. And not only that, but you are sharing not only your story now, but many others to help spread awareness around TSW. so as a mom myself, I just wanna thank you. And I know that everybody listening feels the same because

takes women like you pushing through something really, really hard and making it to the other side and then having the courage to share your experience and the heart wrenching photos and digging deep to relive a really hard experience to raise awareness for others because that is how we pay it forward. And you're doing that in such a beautiful way. So Kristi,

Thank you for being here. And can we just start, will you introduce yourself and maybe just share your story of who you are, what you're doing, and what has brought you here where you're spreading the awareness of TSW.

Kristi (01:19)
Yeah, thank you so much for asking me, you know, to share this because it's, it's so important and so preventable. You know, that's, think the message that I want to get across, you know. So about me, I'm, I'm a mom of just one son and he's seven years old. But when we went through TSW, he was just one month old and I was a brand new mom, you know, had

really no clue of what I was doing. And he had some very, you know, moderate eczema that we brought to the doctor and we were given a standard prescription of steroids, topical steroids. yet, and he had, he was basically given

too much over time and that really was toxic to his system and caused major side effects that most in the medical community just does not accept or acknowledge. And he suffered greatly. mean, it was hell on earth. can't explain.

just how terrible it is to watch your child suffer 24 seven like that. I mean, it was itch upon itch and blood and skin and pain and, you know, he's so helpless at, you know, three months old. It was it was horrific. And it is it is purely completely preventable. And I just want to

give moms the confidence that I didn't have. You I mean, you just feel kind of crazy looking up on Facebook and all these social media pages that are so contrarian to what the doctors are telling you. And you just, you you question yourself the entire way because you don't want to be responsible for your child's suffering. But in the end, is the way through

unfortunately.

Juniper (03:44)
So as we're going through this conversation, is it okay if I ask you some questions to help, if there's a mom with a newborn or a mom who's pregnant or a mom with a three -year -old or a 10 -year -old who might be experiencing this just to kind of help them connect dots?

So when you were pregnant, did you have to have any antibiotics?

Kristi (04:13)
kind of think about that, you know, it such a long time ago. I know I've had, I don't know about when I was pregnant, but definitely I've had times of, you know, where I've been prescribed antibiotics and I am very sensitive to them. Like I know that I personally do have a gut imbalance and I'm actually trying to fix that now. But yeah, I've always, I think had those issues and I'm pretty certain, you

That was Pass on to

Juniper (04:45)
And did he have other symptoms, as an infant?

Kristi (04:52)
He was just very fussy. mean, I just, you know, I it's just a feeling that you know, he was never ever like really like I hold some other babies and I'm like, this is what a baby's supposed to be like, you know, they're just so comfortable and you know, settled and he just from day one never really felt like settled and I don't you know, he was five weeks premature. So I think that maybe had

a little bit to do with it too. But he never slept well. That was it though. mean, you know, we were given the steroids so early on at one month old, it's hard to tell what was from maybe just a gut imbalance versus the steroids.

Juniper (05:42)
we chatted a little bit before we started recording and you mentioned, you know, that you had you were taking him to his well baby checks and you went to an allergist and a dermatologist and you were exploring all the ways of what could be wrong and how can you help him Did anybody ever acknowledge your gut health or his gut health?

Kristi (06:04)
No, never, not never.

Juniper (06:07)
Okay, I was just curious because in my experience with my son too, never. That was never something that was brought up ever.

Kristi (06:11)
I'm sorry.

I'm sorry, I think we cut out a little bit. I didn't hear that last part about

Juniper (06:21)
yeah, that's okay. No, I'm just curious because in my son's experience, you know, we visited 17 different healthcare professionals and not a single one of them mentioned his gut. one time I was like, could this be Candida? I had brought in this diaper and you know, I would Google for hours every night trying to understand specific symptoms and inside I knew that they were all connected.

And he had this really pale diaper and it was full of like string and mucus and he was exclusively breastfeeding at the time. There was strings of blood in it. So I took this to the pediatrician and I was like, could this be Candida or could this be something going on in his gut? And she was like, definitely not. This is just what happens. know, his digestive system is just developing. And

It's just appalling because that would have saved two over two years of his suffering had she listened to that.

so you were exploring all of these different possibilities, allergist, dermatologist, and the help that you received was prescriptions for steroid cream. So your baby is one month old, he's given a steroid cream, and then what happened?

Kristi (07:41)
Then we're in constant communication with the doctors, like, okay, we first we applied it here. Now there's some rash somewhere else. Is it okay to apply it here? And so on and so on. And the rash just slowly spread from his ear to his mouth, down his neck, to his chest, his arms. And we just were starting to case it with more cream until it was almost his whole body.

I remember one night he was just like on fire, just screaming and nothing could settle him. It was like a 911 emergency. And we were, first appointment in the morning, knocking down their door. And she said, our pediatrician said, well, at this point,

If we apply steroids to his whole body, we might as well just give him an oral steroid because it'll basically be the same thing. So we were given an, prenezone, I think. Yeah. And he had maybe three days of that. And again, when we weaned off of that, it was a full body flare. And we saw, we were referred to a dermatologist at that point. And

She reassured us, I asked her, know, I'm really concerned. It's been longer than two weeks of this steroids and I'm worried about side effects. And she said, well, you know, like there's no side effects because we're gonna give you a cream and it'll be topical. It's not gonna be oral. So there's no side effects to be worried about. If anything, there might be a little bit of thinning of the skin

But if it was, you would see it. That was the extent of any guidance or warning. You know, it was just, just trust me, just, this is gonna be the solution.

Juniper (09:45)
Wow. And so how long was he on steroids total?

Kristi (09:54)
two and a half months.

Juniper (09:57)
two and a half months and

Did you like wean him off with your dermatologist or what happened? Like what was the end of that two and a half months?

Kristi (10:09)
So the entire time we were trying to wean him off of it, you know, it would be like, okay, the steroids are working. when they used to, they would work like magic. You would put it on, he'd be red and overnight the next day he would have perfect white skin, you know, like no blemishes, nothing. And

You would tell the doctor, great, the steroids worked. And they said, okay, we'll keep up with what you're doing. And then maybe stop after a couple of days, you know, so the entire time it was this back and forth, like, good, it's working. Now you can stop. And then it would be, you know, all over again. So the tapering, the weaning off just was not working.

And by that point, I was keeping a log of all the flare ups, know, the progression of the steroids, how long I was doing it, where I was applying it, how many times a day or every other day I was applying it and what the results were. And it was very, very apparent to me after two and a half months, what the cause of it was. It was a clear progression that his symptoms were getting worse as we were increasing the steroids. And there was a clear pattern

rebound. So it was very difficult to go against the doctor's advice, especially when you're seeing them in person every week. there's a lot of pressure to follow their guidance. So I remember I used aloe vera, and I read somewhere that that increases the efficacy of steroids.

For a moment, we stopped using steroids. We used the Aloe Vera and to me, I was able to go to the dermatologist with proof. said, you know, we stopped using steroids. I'm only using this Aloe Vera and it seems to be working. And luckily she agreed and said, okay, you can stop. And then we never went back. The Aloe eventually stopped working. And then we went into full blown TSW.

But that was kind of the break that I needed to get away from the doctors to just make my own decision.

Juniper (12:31)
Wow. And so from when you stopped, how long did he suffer with TSW?

years. So that's a really, really long time in comparison to the amount of time that he was on steroid cream or like the topical or any steroids.

Wow, I think that that is.

really, really powerful to hear because that takes so much courage for you to push through that time and to trust yourself so deeply. And as first time moms, it's really, really hard. And for you to be thrown into this and at two months old, two and a half months old, I guess, so if he started at one, so he's like three and a half months old when you stopped probably.

You are such a brand new, fragile, vulnerable new mom. And I want to acknowledge and give you a hug how brave and courageous that is and then to then push on for two years. Because when we see our child suffering, we

naturally all question ourselves like am I doing the right thing? Is this okay? what should I be doing? So did you have support around you or did you just have to feel it inside that I know that we are on the right path and I'm just going to stick with

Kristi (14:07)
Well, luckily my husband was on board, so that was a blessing because I know sometimes with couples, they disagree on what the best course is. So that was really important. And then me documenting everything, that was a big one. Documenting

the progression from using steroids to stopping steroids. And of course it did get worse. It got worse before it got better. And then also looking up other stories, other blogs and seeing their timeline. I did question myself all the time. I mean, I was on Facebook support groups trying to search for every single answer, you know,

So three, four a five a he wasn't sleeping anyways. that's all I could do was try to just research and find some type of pattern. It does flare up and you question yourself over and over and over, but I think that's a big part of our Instagram page.

Juniper (15:15)
Well,

Kristi (15:25)
is to give people that confidence to stick with it because it is really hard. You want to give up all the

Juniper (15:34)
Well, I can't wait to connect my audience with your Instagram because there are so many women and children who come to try to heal their gut and,

Heal their TSW or they just they don't even know about TSW yet, but they they have severe Eczema and they've been on steroid creams and they want to stop steroid cream so they start rebalancing their gut at the same time and At first they're like I think I'm having really bad die -off But then it quickly becomes really apparent like, you know, so the questions are have you used steroids has your child used steroids?

and it quickly becomes, okay, this is definitely TSW. so being able to just keep going, like you can do this and your healing is working. This is part of the journey. so hearing...

how long it took your son to heal. I feel like it be received as so much validation for somebody going through this that you are on the right path. Healing just takes time and the damage that steroids can cause, especially for somebody who has a really severe gut imbalance, those steroids further damage the microbiome.

And so your microbiome is deeply, deeply, deeply in the negative and it takes so much time to heal. something that I'm seeing a lot is, you know, there's two women in particular that I can think of right now who are actively in the depths of TSW and six children in my community who they're rebalancing and, you know, every

other week, every couple days, they're reaching out for reassurance because there's flares. And sometimes you can't pinpoint what is causing that, but our microbiome is naturally fluctuating all the time. And when you are in the thick of TSW, you might not always be able to pinpoint what is causing it to flare and get worse,

over time is all going to get so much better. And so the two women who their timelines are so comparable and it's really wild and really beautiful to be connected with them because they came to heal their gut and to get off of steroids. They didn't know that they were going to experience TSW, but they're at the beginning of their second gut rebalance kit right now. And just earlier today, I got a picture from one of them. this

my skin, this is eight weeks in between, and she's almost better. But so many people come, especially to only because this is like a healing, a healing method, a healing program. And people want to see results really, really quickly. And a lot of times when it's, you know, I think that a lot of Western medicines, steroid creams are a great example of this. We are conditioned to expect

Kristi (18:51)
Mm, yeah.

Juniper (19:02)
instant results, instant gratification, but that's not healing, that's treating. And real healing takes time. And everybody's timeline is different. And so it took your son two years. It took this woman who just sent me picture updates. It's taken her, you know, a little over three months. And of course she still has a journey ahead of her, but she's making massive progress. But everybody

different and that's okay. And I just want to have that conversation with you that we can't compare our own healing timeline or our child's healing timeline to anybody else because it's so dependent on our genetics. The medications that we had during pregnancy or during birth, the way that we gave birth, the severity of our own microbiome that we passed on to our baby.

There are so many factors. Our exposure to different environmental chemicals and herbicides and pesticides and pollutants, all pathogens, all of it factors into it. And everybody's makeup is different. And so everybody's healing timeline is their own. And I think that's a really beautiful part of healing is being able to surrender to your timeline and trust in the process.

Kristi (20:30)
Yeah, 100%. I mean, I think, like I said, with the steroids, they work like magic, you know, and that should have been my first sign that it's a drug. I mean, just because it's given from a doctor doesn't mean that it's, there are no consequences, you know, it's not natural. It's toxic. It's really toxic and it shouldn't be taken unless

it's absolutely necessary. Because there are severe downsides. So yeah, I mean, it's something natural, like, you know, the gut healing kit, I mean, it's going to take time, but it's natural. And it's actually healing, like you said.

Juniper (21:19)
It heals the body. It's killing the overgrowth of bad bacteria and yeast and parasites in your gut while replenishing the good microbiome. that is, you your skin is a roadmap of your gut health. It's the visual health of your gut. And not all of us experience skin symptoms when we have an imbalance. But if you are experiencing

an eczema psoriasis rash, your gut is at the very, very center of that. I know my purpose in being here is to raise awareness, especially for moms in their motherbearing years

It is so common for us to unknowingly, maybe even knowingly have an imbalance, but we don't know that we're gonna pass that on to our child during birth. And all of this is completely avoidable. Our children have suffered for no reason. And I'm not familiar with your birth story, but for me, I had a midwife. I had a very beautiful natural childbirth.

Never once was my microbiome brought up though, even in that holistic space, it was never acknowledged. It was take a prenatal vitamin and an omega. I was asked what I was eating, but my gut was just never acknowledged. And so of course we don't have this awareness.

Kristi (22:44)
Mm -hmm.

Yeah, I wish I did. had a natural birth too and it was the same thing, know, I just, yeah, so I had a completely natural birth and that was, I thought that's all I needed, right? But if I had healed my gut first, this probably wouldn't have happened. But a lot of people ask me all the time, right? What did you do to heal him? How did he get better? And unfortunately,

The answer is time. I had to stop using steroids, damaging his immune system. I had to be patient and give it time and stick with it. I stayed away from any sugars. I made all his baby food and just gave him healthy whole foods because I knew that his body had what it needed to heal. I just needed to support that and give

his body the strength to recover on its

Juniper (24:04)
one of my very favorite parts of only is being able to connect with women like you because man, women are so innately strong and wise. And for you to be able to support your son like that is a gift that makes me emotional.

that you had that strength to gift him that time for his body to heal. so, okay, I'm where should we take this from here?

Kristi (24:41)
I think one thing I would like to say is that all of the doctors, even our current pediatrician, they said that he would have severe eczema for his whole life. They were just certain this is something he's going to have for his whole life and he can try other drugs that was their solution is more

drugs, steroid alternatives that have even worse side effects. You so that is the alternative. You can either try to heal on your own and it's going to be painful and take time. But the alternative is really a parade and increasing severity of prescription drugs. And there

Steroids are bad enough, but there are even worse drugs that are beyond that. Once the steroids stop working, then there is Aladal, and Protopic, which has the side effect of lymphoma. And then they give kids Methotrexate, which is a chemotherapy drug. And now there is Dupixent, which is brand new, but they're perfectly fine giving it to two -year -olds. An injection.

I don't know what it is, but there are side effects of blindness. But none of that is discussed in the doctor's office. It's really glazed over completely and it's presented as if it's totally safe. So there's a cost either way and I would definitely go the natural route. It was difficult, but...

None of the doctors thought that he would heal. They were certain that he was gonna have severe eczema for his whole life and that he would have all these severe allergies. They told me he would be allergic to peanuts forever. And now he eats peanuts, fine, no problem.

Juniper (26:50)
That is, well, and the parallels are absolutely, they're crazy. I mean, my son, he had nine severe allergies and when we healed his body, they went away. And so this is like the conversation of real healing. It's not like treating individual symptoms or settling and living with individual symptoms, but it's actually healing the whole body.

So, Kristi, will you, I want to ask you one more question that I wanted to ask earlier is, did you breastfeed?

Kristi (27:25)
I did until he was about five months old and they were trying to pinpoint something in my mouth that was causing the itch. I did all the elimination diets. I even did a food sensitivity test and I just eliminated everything from my diet. And of course it didn't work because the cause was the steroids.

I gave it up and I used a hypoallergenic formula at about five months.

Juniper (28:03)
Okay, the reason that I ask is because this is the other thing that every single mom is told is it's probably your milk. It's probably you. And it is not. Every single mom who has stopped breastfeeding, that does not heal their child.

I don't even know how many countless times I was told it's probably my milk. I should just stop breastfeeding. And how common this is and

It didn't make a difference for your son. And you had to do something that you probably didn't want to do. But you were in a situation where you will do anything. I'm gonna do anything to help him heal. And if gosh, I could be causing this, of course. And so this is...

conversation that I'm having with moms every single day is I was told to stop breastfeeding. My child hasn't gotten better. I don't know what to do. I still have milk. Should I go back to breastfeeding? Like this is just a conversation that is happening all the time and it's really really unfortunate. Even a lactation consultant told me I should probably stop breastfeeding because it's probably my

Kristi (29:26)
Yeah, I knew at the end, I remember someone telling me, think you should get this food sensitivity test. I I remember feeling like rolling my eyes like, fine, I'll just do it. know, cause that's what I'm gonna try to do everything I possibly can.

But I knew in my gut that that's not, it wasn't me. But at that point you're trying to just do anything and everything you can.

Juniper (30:05)
So Kristi, now your son is seven and he's thriving and you have taken your experience and you now share not only your story but other family's stories about TSW. this right?

Can you just tell me about your page, about your mission, about maybe some other family stories that you could share here?

Kristi (30:36)
Yeah, well, the page is really intended to be kind of like a guidebook. You know, so a reference of photos and doctor records and prescription records, signs of healing as well as signs of TSW and steroid side effects. It's really intended to give confidence to those that

in this journey to stick with it because it is a very difficult, dark road. yeah, and to encourage others to share their stories and to parallel our stories with the many other stories that are on our page because the stories are almost identical, almost all of them. They're basically the same pattern.

the same type of prescriptions, the same symptoms, the same timeline for healing. And in the end, they're better and they don't have a lifetime of prescriptions ahead of them. They're healed and thriving in the end.

Juniper (31:49)
Wow, what a beautiful thing that you have created because like we talked about earlier and when your child is, is your page mostly focused on children or is it adults as well?

Kristi (32:03)
It's only children. Yeah, there's a lot of other pages, I think, for adults that are dedicated, you know, to their stories, but it's only basically babies. feel that babies are especially vulnerable, you know, in terms of the population. Their immune systems are so fragile and so just developing. They're amongst the most at risk for having side effects from steroids.

Juniper (32:13)
Sure.

Kristi (32:33)
So yeah, and they also have, I think, the greatest chance of complete healing because they just get stronger every

Juniper (32:44)
Well, I think that's that is really amazing for you to have such a specific focus because that I think that really helps listeners to to like be able to come and connect with your page and really no matter how old they are though, like our algorithms are amazing. And if somebody is coming to explore your page, but they are 45 years old and experiencing this, you will quickly be connected with other stories. And but the thing is, is I think that

across the board, whether it is a baby or someone middle age or older, it's the same. It is the same when you start looking at journals or at timelines, you can compare the parallels. It is absolutely wild. And for me, I don't know if this is true for you, but I think

Kristi (33:23)
Mm -hmm.

Juniper (33:43)
People don't know that TSW is a thing until you're in it. I don't think that anybody even starts steroid knowing that that is a possibility.

Kristi (33:48)
Mm -hmm.

yeah, no, it was never ever discussed. And I remember trying to figure out like, this doesn't feel like eczema. know, something is seriously wrong. I just couldn't pinpoint it. then I remember seeing photos and I think a lot of people have this experience where they see a photo and they say, my gosh, you know, that's what my skin looks like. You know, it just immediately clicks

Yeah, and so I think having that comparison, that parallel, like there's just that lobster red skin, know, those red sleeves, like there are there are real clear indicators of steroid rebound.

Juniper (34:45)
okay, so Kristi, I'm going to link your Instagram page in the show notes so that anybody experiencing this wants to learn more, they can easily find you. Is there anything else you would love to talk about before we wrap up our conversation?

Kristi (35:03)
no, I think that's, that covers a lot. yeah, I guess how about with you and your audience? how long do you see kids that are going through TSW before they're like fully healed or 90

Juniper (35:25)
there are some children who miraculously heal really fast. They will heal their TSW with one gut rebalance kit, which is, that's 64 days. And so with the gut rebalance kit, you get free access to my course.

In this course, you learn foods to avoid that are feeding bad bacteria, yeast, pathogens, parasites, all of these yeast pathogens and bad bacteria, they grow and flourish together and then enter parasites. And it's like this really toxic overgrowth that

So many people end up having overgrowth of all of those. And so when you starve them by avoiding the foods that are feeding them, and then you're taking the supplements from the gut rebalance kit, it's killing all of those.

not feeding them and so they die. So you're you're healing the gut but 70 % of our immune system resides in our gut. So when you're healing your gut you're also greatly supporting your immune system which helps in the healing of TSW so much. So it's kind of a long answer but there are some children that will heal with one kit. There are others who

do five back -to -back rebalances together and then they're healed. And so it's so hard because people will say like, long is this going to take? I don't have that answer. There's so many variables in someone's healing. But in my experience in supporting families and children who do go through TSW,

Kristi (37:08)
Mm -hmm.

Juniper (37:20)
the timeline is much shorter than someone who, like your son, is two years, I would say the longest with rebalancing is half of that.

Kristi (37:38)
Wow, wow, that's amazing. Yeah, so we did some probiotics, you know, here and there, but I, and we were trying like, we, so we supplemented with probiotics and I think vitamin D. But yeah, we didn't have anything like that. Like that was specifically to read. We were just kind of trying to do everything to just naturally support him.

I would have loved it if it was a year. Two years was horrible.

Juniper (38:13)
Well, it's so long. mean, even a year or two, it's all so very long. And when your child is suffering, especially I feel like visible symptoms like skin rashes, TSW, hurts so deeply because you see it all the time. Whereas like internal symptoms, it's not in your face all the time and it can be easier to like...

I don't know. I see this trend with moms. We carry so much guilt, especially when we see the symptoms every day. And I feel that there, you know, maybe we are judged or maybe we feel judged or, you know, it's almost like pregnancy. When you have visible symptoms,

It's almost like our culture treats it as an open invitation for, here's this advice. You should do this or you should do that. You know, like when you're pregnant, it's just like some, for some reason, it's like an open invitation for uninvited advice. And I think the same is true

children or even even adults when you have skin rashes like this, I don't know if you experienced that but there is so much external pressure of try this or do this or do this and we don't know it's too much noise and there is too much and this is why I have created ONLE is because I so badly needed

Kristi (39:40)
Mm -hmm.

Juniper (40:04)
clear guidance of like, okay, this has been done before. This is what you do. Here's step by step what to follow. Here's what to eat and what not to eat. Here are the supplements that you need because that's the whole other part is, know, antibiotics are really, really, there are so many horrific side effects, just like steroids, you know, they're different,

they are overused and people will suffer with symptoms from the antibiotics for years. And there's never even the connection. And at best a doctor might say, go grab a probiotic at the grocery store. We know as patients, we don't know that there is a very specific kind of probiotic that you need to heal the gut. And so a random probiotic that's at the store

Kristi (40:42)
Hmm. Mm -hmm.

Mm -hmm. Mm -hmm.

Juniper (41:03)
is not going to do what we need. So whether you're healing from bad oaks or steroid withdrawal.

Kristi (41:05)
Mm -hmm.

Juniper (41:10)
there's a very specific way that you can heal your gut. And so that is why I'm here is to, to offer a very clear healing path that, that works to heal my child and has now completely feels surreal and how many thousands of women and children have healed following this method. And

Being able to be here is humbling and such an honor.

Kristi (41:44)
Yeah, it's amazing. Yeah, the community has grown so much from when we first started. you know, so it's definitely so many more resources and options to lessen that timeline, which is great information and, you know, so.

and so many other stories to follow to let you know that you're on the right track.

Juniper (42:11)
Absolutely, I feel like that is one of the most beautiful gifts of social media is being able to have a place to make these visual connections to what we are seeing and to read other people's stories because I don't know if...

you experience, is this something that you experience? feel like doctors are incomplete in denial that TSW is a thing.

Kristi (42:41)
total denial. mean, that's what caused me to make the page because I wrote a whole, I wrote a letter, I included all the documentation, white papers, know, FDA warning labels, photos, and I put it in a package and I sent it off and then they glazed over it and just handed it back to

and they wanted no part of it. They didn't want to file an FDA adverse reaction report. They just turned their nose up at it. And I just thought that was

Juniper (43:19)
So you sent this to the doctors and dermatologists that you guys had been to.

Kristi (43:24)
Yes. And we even took them to a formal mediation because I just wanted their attention that this is so serious, so severe that they should have it on their radar to know what to look for if someone is showing adverse reaction signs. you know, my ask were very little. I asked them to learn to talk to ITSEN about TSW

file an adverse reaction report to put steroids as a negative side effect drug in his medical records and to listen to a patient statement and they basically with their attorneys said, no, we're not doing any of that. Like you could maybe mail us the letter and maybe we'll read it. But other than that, like good luck. And the next step would have been to file a formal malpractice lawsuit.

And I was very angry that they had no interest in learning about it. I think it's important to have an open mind and know where your blind spots are. And then we had COVID and things shut down and we missed the statute of limitation. I still wanted to get some awareness out there. if there's...

If there's anything we can do to prevent this, I would never ever wish this on anybody. It was literally hell on earth. can't, if I think about what hell is like, it's probably like that, to watch your child suffer like that 24 seven incessantly with no, no relief.

Juniper (45:01)
Well, and not only that, but they are so uncomfortable that they're not sleeping. And so you're not sleeping. And so on top of the suffering is sleep deprivation and this feeling of being really alone.

And I'm so happy for you that you and your husband were on the same page and that you could support each other through this. But like you said, there are so many families where they don't see eye to eye. My husband and I were similar to that. You my husband was just like, you took him to the doctor, except the steroid cream. The doctors know best. And I just had this really like deep, deep, sacral hell no. Like I

I cannot put that on him. I remember standing at the pharmacy just sobbing because this is probably the 10th prescription for a steroid cream and I had just thrown the other nine away but I'm sitting there and my baby's in his car seat just you know he had his little mittens on but he's dripping in blood and he's miserable and the only

support that I'm given is steroid creams. And so I'm at the pharmacy just sobbing with my baby who's bleeding and screaming. And the pharmacist is just telling me it's fine. Millions of people use steroids creams. It's totally fine. It's fine. It's fine. And I'm on the phone with my husband saying, I just can't do it. I can't do it. And he was so

Kristi (46:28)
God.

Juniper (46:40)
scared too for our son and he was angry with me that I'm not accepting the help that is being given to me that could maybe help our son. And that tension is so hard and you know we eventually got on the same page thank goodness but there were many times in our son's

two and a half years of being really unwell that our marriage was really, really, really rocky. Because again, there's sleep deprivation happening. I'm consumed in fear and trying to figure out what is causing all my son's And I didn't have a place to go. I didn't have answers anywhere. I didn't have a friend who...

you know, I asked everybody in Newark, like, have you seen something like this? But everybody's saying, no, I've never seen anything like that. I've heard steroid creams are great. And that was it. Google was my only resource and it wasn't very helpful. And so what you have created is a real gift and I'm so grateful to be here to be able to make an impact together.

Kristi (47:53)
Yeah, thank you. Thank you so much for having me and thank goodness you followed your instincts. I I know we discount that so much, but it matters so much. Yeah, there's just something about moms and their babies that matters so much, that instinct, and I'm glad you followed

Juniper (48:19)
Well, and I'm glad that we get to be here to create pages to help educate moms and empower them to listen to that instinct because I think, you

We were talking before we started recording about how much pressure there is from doctors, pediatricians. When you're going to these well child checks and they're seeing a rash, there's so much pressure to follow what they say. And I loved how you put it is that they've been trained by pharmaceutical companies and that is their agenda. And there's...

There's not support there for moms to listen to what's right, but there isn't a single mom that walks out of a pediatrician's office with a steroid cream who's not internally questioning if this is right or not. And so if you have any takeaway from this episode, I hope that

that your instincts are right and and to you have to trust yourself and it doesn't matter if you're at the beginning of your journey or many many many years in it is never too late to turn inward and to start trusting that instinct.

Kristi (49:37)
Absolutely.

Juniper (49:39)
Thank you so much, Kristi. It's been such an honor to talk to you and get to know you and hear your story. And thank you for your

Kristi (49:40)
thank you.

You too, thanks so much, can't wait to get my kit.

Juniper (49:51)
Yes!