World Juvenile Arthritis Day: An Interview with Teresa Troyano

In this episode, Bri & Beka are joined by Teresa, who is a JA mom. Her son, Jack, was diagnosed with System Juvenile Arthritis at 19 months old. Teresa shares how she advocated for the best care and leaned on her community for support. 

Jack is the National Arthritis Foundation Youth Honoree for the Walk to Cure Arthritis this year. Follow along Jack's journey here. 

We encourage you to get social with us on social media by liking our Facebook page, “Those Girls with Arthritis”, and following us on instagram @thosegirlswitharthritis. Send your questions to us on Instagram or click here to submit your questions anonymously. We encourage anyone who would like to join our Facebook community group to do so! You can access the page by clicking here. Check out our merch shop by going to thosegirlswitharthritis.com. Proceeds from the sales will be donated to the Arthritis Foundation.

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Disclaimer: Those Girls with Arthritis was created by two friends hoping to share their personal experiences and learn from others. We are not medical experts. Please contact your health professionals before making any choices to change your medical plan.

Transcript

Brianna Ramos (00:00)
Hey guys, welcome back to those girls with arthritis. As always, this is Bri and I'm here with Beka.

Rebekah Nicola (00:06)
Hey y'all, it's Beka, Bri. I am so excited for another episode. This week, we have a special guest with us in honor of World Juvenile Arthritis Day. We actually have an arthritis mom here with us to share her story. So I will go ahead and pass it off to Teresa now to introduce herself.

Teresa Troyano (00:30)
Hi there, it's so nice to be here. Thank you for having me. I am Teresa Cheriano and I have a son who's six years old with systemic juvenile idiopathic arthritis, so SJIA. And we're here in New Jersey and he is doing great luckily at the moment, but he had a pretty interesting diagnosis. We've...

We've had juvenile arthritis since he was one years old. So it's been a journey for sure.

Brianna Ramos (00:57)
Yeah, so we've seen you sharing your story a lot on social media and whatnot. And we'd love seeing the videos of Jack and of you guys and being involved with like the walks and arthritis foundation events. It's such a great way to get involved. Can you just like, we've seen, like I said, we've seen a little bit of Jack's story, but can you share like from the time he was diagnosed, what that looked like?

Teresa Troyano (01:22)
Yeah, of course. So it happened around when he was around 17 months old. It was November of 2019 and he just started having constant fevers. He almost started limping at one point. I mean, he had just learned to walk a few months ago. So it was weird to see him, you know, not want to really walk, not really want to play, you know, he was sickly.

and we were going in and out of the pediatrics office. They weren't sure what was going on. Finally, after the seventh day of fever, that's when they really start to get concerned because there was an infection that they can't figure out what it is. So they sent us to the hospital and diagnosed us with Kawasaki disease, which is autoimmune disease that affects your heart.

Brianna Ramos (02:02)
Hmm.

Teresa Troyano (02:05)
and it's also a rare disease. And from the get-go, was atypical asymptomatic for that disease. So there's a lot of different symptoms, visual symptoms that you have when you get diagnosed with that. He did not have those. So I was very hesitant to believe that this was the correct diagnosis. But of course, I wanted to make sure I was doing the right thing for my son. They wanted to treat him. They had to treat him.

Brianna Ramos (02:19)
Okay.

Teresa Troyano (02:29)
pretty quickly with IGIV fit therapy. And he actually didn't do very well with the first treatment. And then the second treatment, they did it with steroids on top of the IGIV. He also had a little bit of an issue. And then the third time they did just steroids and he seemed to be better. So, you know, we were there for quite some time and then they sent us home.

Unfortunately, we were back within about two weeks because he still had fever. He still was having issues. And so they did the same type of treatment again. It's almost like a band-aid. They were kind of band-aiding the arthritis because they didn't know that was what it was. Again, we were questioning, you know, could this be something else? And at that point...

Brianna Ramos (03:06)
Mm-hmm.

Teresa Troyano (03:18)
we were in a hospital close to our house in New Jersey and they said, well, we really need to see a rheumatologist. So, you at this point we had only been seeing infectious disease doctors and a cardiologist and, you know, the regular primaries and what have you. So at that point I was like, yeah, of course, why didn't we get a rheumatologist in here earlier? You know, it was very odd. And it was during the holidays.

Brianna Ramos (03:32)
Yeah.

Teresa Troyano (03:40)
but they had said that they only had a part-time pediatric rheumatologist.

we had to be transferred to another hospital to see a rheumatologist right away. So we did that. She treated him with another pulse, a pulse-doc of steroids and, you know, sent us off on a merry way. I think it was like about a week later, we went back in for a checkup and they were like, oh, we think, we think he might have systemic juvenile arthritis. And, you know, the way that we were told was not very convincing. It was not very confident.

And I was very upset about just the whole fiasco. So we ended up getting a second opinion. And at that time, that's when the doctor, the rheumatologist, the second opinion said, listen, this is, is jumbled arthritis. This isn't anything else because originally when we first heard it, they were like, well, we want to rule out leukemia and we want to rule out other.

Brianna Ramos (04:15)
Yeah.

Teresa Troyano (04:37)
potential things that it could be. They didn't seem so confident that it was arthritis. But when we went to the second opinion, that's when the doctor was very confident. mean, it was just like night and day. And he is such a nice doctor. And he said to us, he's like, know that you're here for second opinion. So it's really up to you if you want to continue treatment here, if you want to go back.

Brianna Ramos (04:41)
Yeah.

Yeah.

Teresa Troyano (05:04)
So there was no question in my mind. I was like, of course, yeah, it's a hospital that's a little further from us, but I would go anywhere to treat my son and make sure he's healthy. So because he was not diagnosed correctly and not treated correctly for so long, it took us that much longer to get his disease under control. so that took another four months or so during COVID.

Brianna Ramos (05:08)
Yeah.

Teresa Troyano (05:27)
I actually had a baby in February 2022. It was an interesting, very interesting time. And luckily, by September of that year, his arthritis was under control. We had the correct medication and everything and things were getting a lot better. So now he's doing great. mean, you know.

Brianna Ramos (05:30)
Wow.

Teresa Troyano (05:46)
He is under a strict regimen of medication and biologic, and he also has an infeasible infusion. And he's just, he does great. He, you could never even know, you know, he's running around like a crazy person and playing and just like a normal little boy. So luckily, you know, the end result here is, is very positive. But obviously it was a hard journey to get through.

Brianna Ramos (06:01)
Aww.

Yeah, going back a little bit to like his, diagnosis process, what was there like a turning point that they were like, like you should go to rheumatology. Like what was it that they, was it like a lab or?

Teresa Troyano (06:20)
So when we went back

into the hospital the second time, it was like around three weeks after we were in the hospital and they treated us with the IGIV therapy and the steroids and all this stuff that I was saying earlier. We went back in the hospital and that's when they started kind of questioning it. Kawasaki affects the heart, your artery enlarges.

Brianna Ramos (06:38)
Hmm.

Teresa Troyano (06:44)
So they kept monitoring that and it was like slightly enlarged and you know, they're like, it's slightly enlarged. then this time around, they were kind of like, well, hmm, you know. So it was, it was, you know, it was a lot of us also like questioning things, saying like, you know, what's going on here?

Brianna Ramos (06:56)
Yeah.

Yeah.

Rebekah Nicola (07:05)
Yeah, I feel

like so challenging. Like I just experienced like kind of being a caregiver and like an advocate for someone else, like not through a child, but through my father. And it's hard when you, yeah. And it's just like, I just have such a different respect for like you guys, like you as a parent and other parents, because not only are you having to advocate for them, but like you,

Teresa Troyano (07:13)
Yes. Right, right, yes, I heard your episode on that.

Right.

Rebekah Nicola (07:33)
to my understanding, like you didn't have any medical knowledge of all this stuff before. Like you're learning stuff as you're trying to advocate and as you're trying to piece things together and like taking notes about, well, this doctor said this and this doctor saying this and like, why are you guys not on the same page and having to do all that? What, like when you were going through all this, were you able to like talk with

Teresa Troyano (07:38)
Right.

Rebekah Nicola (07:59)
family members, friends, or like maybe people in the waiting room or something like to go through, like I just am like curious about that side of your story too.

Teresa Troyano (08:09)
Yeah, yeah, no,

that's a great question. So actually I've had a history of having illnesses in my family, people with illnesses. My father unfortunately had cancer in 2016. So, you know, I've kind of been down this road before. So the other thing was at the time I was working for a contract research organization, which is a company that supports former companies.

and we have doctors in that company. So I immediately reached out to some of the doctors I knew there to get their advice and understand more about this. Because actually one of the things too was when they decided they wanted to put them on the biologic, it's only approved for children two and older. And my son was 19 months old and I just was freaking out. I'm like, what?

how can they, you I don't want to, it's not approved. You know I mean? They can't do clinical testing on kids under two. And that makes sense. I mean, I wouldn't necessarily, I don't know if I would put my child in a clinical test unless he was like, you know, very ill. think maybe in the cancer world, it might be different, you know, so of course there's so many questions and you really need to use your network to reach out. mean, even,

Brianna Ramos (09:00)
Yeah.

Teresa Troyano (09:21)
because like I said, we were at one hospital and my mom kept telling me, you gotta go somewhere else. You gotta go somewhere else. You gotta go somewhere else. And you know how sometimes you're just like, yeah, yeah, yeah, come on. We're just, you can't, we gotta figure out this. It's just so complicated to even work with one institution, let alone figuring out how to go somewhere else. And luckily,

our pediatrician, even though they weren't really involved in the diagnosis and things of that nature, because, you know, they're not allowed to be, they're outside. I had a good relationship with one of the pediatricians. She would kind of check in like on a personal level, right? They would say, oh, this is a personal call. And, you know, I was telling her what was happening and wanted to go to the second hospital for another opinion. And she was able to get us an appointment, our original appointment. So it was a January and this was happening.

Our original appointment when we called was March. And she was able to call up and say, listen, you got to see this kid right away because he's really struggling. we were able to get an appointment like within a week. So you really just use like your network. don't, can't be afraid to reach out and ask people things or you know what I mean? Like for me to, in my work to like reach out to these doctors that I didn't even work with per se.

Rebekah Nicola (10:16)
Wow.

Brianna Ramos (10:29)
Yeah.

Teresa Troyano (10:41)
you know, but you have to, because this is a matter of, of your child's health, you know, the future of, of your child, you know, because he was waited long, it was that much harder to get diagnosed. So could you imagine I hear online, you know, on my, in the Facebook groups, some of the moms would say, you know, it's been months and months and months, and we still can't get the arthritis under control. And it's so scary. So the sooner you get diagnosed and get the proper treatment, the better.

So I would just say, use your network. if you're, I never really talked to anybody in the waiting rooms in this situation, but obviously I've done that and other, like when I was pregnant and stuff, obviously I would always talk to the other pregnant ladies.

Rebekah Nicola (11:17)
Yeah.

Yeah, no, I

Brianna Ramos (11:24)
Hehehe.

Rebekah Nicola (11:26)
love that advice about using your network and not being afraid to ask questions. I feel like sometimes people are so reliant on like Google and like figuring out like let me just Google all the stuff and then go down all these rabbit holes and obviously because of the age of Jack at the time like not understanding what the side effects could be and I know

Teresa Troyano (11:38)
Right.

Rebekah Nicola (11:48)
like you're like a boy mom. I know for me, like my parents were always very hesitant about like, will she ever be able to have kids one day and things like that. Like that's scary to think about. Like your kid is under two years old and you have to make these life-changing like decisions for him, you know, like he doesn't understand, you know, like just a scary situation.

Teresa Troyano (11:57)
Yes, that's huge.

Right.

Right. Yeah, it's so scary. And we

really had to figure out, okay, risk versus reward, right? The risk of him continuing to have this inflammation in his joints and potentially having to have surgery, knee replacements, hip replacements, all these horrible things you think about or hear about, right? Or these potential side effects from the medication. Yeah.

Brianna Ramos (12:34)
Yeah, yeah, it's so true.

Teresa Troyano (12:35)
Everything has a

side effect. There's always consequences for everything we do in life. Now I'm on the span wagon of all the food issues and the food die. You know when he surely temples I've been giving my kids? I'm oh my God, I'm poisoning them. But yeah, it's the risk versus reward. We wanted him to...

Brianna Ramos (12:52)
Thank

Yeah.

Teresa Troyano (13:01)
get under control and a lot of it was, you know, trusting our doctor. You know, our doctor was very patient with us and he was very confident in how he was telling us and he was helping us, he was letting us make the decisions too. So I love that about our doctor. Like he really, what do you think? You know, and if you want to try this, all right, let's try it. You know, doesn't try it, but if it doesn't work, then we got to figure out, you know, how to.

Brianna Ramos (13:25)
Mm-hmm.

Teresa Troyano (13:29)
do something different. Because, you know, and in the beginning he was on the biologic, methotrexy and steroids. My husband was really worried about the steroids, you know, because those also obviously a lot of people, you know, the noise around you is like, oh my steroids, your side effects, stunting is growth. We were afraid of stunting is growth and all this stuff.

Brianna Ramos (13:46)
Yeah, there's a lot of side effects are really hard to get off of like it. Yeah.

yeah.

Teresa Troyano (13:55)
But again, the doctor was like, this is the risk versus reward. This is going to get him better quicker. And it did. It got him better quicker. And then as soon as we could, we took him off. But you have to think about that. And with SAJIA, there's a complication called mass that affects the organs. And that's another whole can of worms. And you don't want to get involved in that. So obviously,

We were like, let's get this under control so that, you know, we don't get inflammation in any of the organs because that's just, could be really bad. So.

Brianna Ramos (14:30)
What was your first thought when they said arthritis? Obviously you had already been through so many other words were flying around the room. Have you ever known a kid with arthritis or anything where you just like, okay.

Teresa Troyano (14:44)
No, no,

I had no idea. I really didn't know much about arthritis at all. I knew my grandparents or my mom has it. But I really didn't know much about arthritis. had zero knowledge. So of course, I went to the internet and was like Googling and trying to find out information.

the nurse that I, that one of the nurses that we were with had mentioned the arthritis foundation and also the Facebook groups. So there's a ton of Facebook groups for moms or parents with kids with arthritis. So those are very, very, very helpful because you just start to go through it and read it. And I mean, you are going down the rabbit hole and some of the stuff you really don't want to see, but

At the end of the day, it's good information because it's coming from your peers and people that have gone through it before you. and now I'm on there. I'm always, because usually what happens is once you first get diagnosed, you go on there and you, you know, you've introduced yourself and you say, you know, I, this is my, my kid's story. And then, so I always go on there and try to, you know, tell them, you know, Jack's doing good, you know, and hang in there because there's so much along with it that.

you just don't even know. mean, at one point they were telling us about having to do the shots and then infusion at home. And I'm just like, what? Like, I don't even, I'm not a medical person. Like, I like ran away from that industry and growing up, like I knew I didn't want to be a doctor or a nurse. I hate blood. I hate needles and all that kind of stuff. And they're telling me we have to like give him a shot and give him.

multiple shots and an infusion. I'm like, what are you talking about? But you you get used to that and figure it out, guess. Luckily, my husband does most of that. So I'm more a support person and like the helper to get anything he needs. yeah, when I first heard it, I just, I had no clue. I mean, to the point where I had no clue that you would even need like, you know.

Brianna Ramos (16:26)
Yeah.

Yeah.

Teresa Troyano (16:51)
injections as medications to

Brianna Ramos (16:54)
Yeah,

no, that's totally fair. I think that's like what most people go through when they're like, when they first hear the word, I'm like, okay, like my grandma had a form of arthritis and like, that's all I knew. But I was like, me? Like that's crazy. So it is definitely like a lot to handle in like a very short bit of time in that doctor's office.

Teresa Troyano (17:05)
Right.

Yeah, yeah, was there was a lot. was a lot of just not knowing and just trying to get information the best way I could and talking to people. Like I said, you know, one of the other things I did was I called the Arthritis Foundation. The local chapter here, Emily Myers, is just an amazing advocate and person to talk to. you know, she I talked to her right away and she

It's like get the JIA power pack, think it's called. It has the teddy bear and the backpack and it has little books and stuff to tell you about like arthritis and all that information. So that was good. But yeah, I mean, it's just, and then, you know, having to explain it to everybody, that's another part of it that you're just like, you know, what is that? You know, what does he have? I don't get it, you know? And you're just like, it's frustrating, you know?

It's frustrating that people don't understand or have awareness about the disease, I guess, because it's a rare thing for children to have it.

Rebekah Nicola (18:12)
Yeah, and I'm sure you get to the point where like I know Bri and I've talked about like we have elevator pitches kinda and like we say this to this person or this to strangers or this like you're always kind of pivoting on like how you need to explain things because there's some days you might want to be open and explain and like can bond with someone they might know someone or there's some people who like do not understand I'm like I just I can't explain it to you. I just I just can't like

Teresa Troyano (18:17)
Yes.

Right.

Yeah.

Rebekah Nicola (18:38)
It's hard, it's frustrating and especially

Teresa Troyano (18:39)
It's very hard.

Rebekah Nicola (18:41)
like it's not necessarily you, it's again like someone that you're caring for. not only are you trying to explain what it is, but also like what they're going through and you can only explain as much as you see. Like I remember I used to like hide things from my parents like, you know, like I would even like give myself shots like I wouldn't let them in the room with me and my mom would like, I need to make sure you're doing your

Teresa Troyano (18:46)
Right.

Okay.

Rebekah Nicola (19:06)
Injection I'm like, I just don't want anyone staring at me. I don't want anyone, you know, and they'd be like I don't know like exactly what you're going through because I was so like Did not want to talk about it, you know, so I know Jack is a little bit younger Like that was I was like in middle school high school like don't come in my room, know But obviously I saw like a the video you shared with us where Jack was like kind of watching on something on the iPad and your husband like quickly did

Teresa Troyano (19:18)
Right.

is a myth.

Yes.

Yes.

Rebekah Nicola (19:35)
You know, like little things like that. Have you learned any like tips and tricks when you're giving injections or medicine or anything like that? Yeah.

Teresa Troyano (19:42)
Well, that's the trick. The iPad is definitely the trick. So honestly,

I don't know what we would do without that. That has helped us get him to calm down. I mean, there was one point where, I guess he was probably around four, maybe, where he was like running around and we had to chase him and like really hold. I mean, I would hold him down in the beginning. Obviously you had to hold him down.

But then when he was four he was starting to get big and you you can't like I couldn't really hold him down You know But the iPad was definitely a good thing we would offer treats Afterwards so we have like a candy bag and you know anything you want you know I mean once this happens like and this is still to this day, so this is five years later my husband and I are like Literally he could ask for anything right after that and we would say yes because like crap you know I mean you're just

Brianna Ramos (20:33)
Yes.

Teresa Troyano (20:36)
Especially the biologic medication because I don't know that needle to me is Inhuman it's like torture. I don't know

Brianna Ramos (20:36)
Yeah.

Rebekah Nicola (20:42)
And sometimes the noises

the injections make like sound even more intense than like what it actually is. I, yeah, I used to, but mine was like the click was so loud. It goes like, you know, and you're like, my God.

Brianna Ramos (20:47)
Yeah, I don't know which one.

Teresa Troyano (20:48)
You can have the auto ejector, you do the auto ejector, that's what we have.

Yeah, the click is loud. Yeah, the click is loud. But the needle looks

thick. Because he used to, with the methotrexate, we did the diabetic needles. She could get really small ones. And I felt like, these are nothing. This is great. And then with those needles, was like, smoke. I'm trying to remember if we had different needles in the beginning for that, for the biologic. It was on ectimero.

Brianna Ramos (21:07)
Mm-hmm.

Yeah.

Yeah, they are big.

Has he been able to stay on that like the whole time?

Teresa Troyano (21:24)
He's been able to be on that the whole time.

Yeah, we tried a lyrus in the beginning and that didn't work. then actymera has been great. Really, really great. So knock on wood. I'm hoping that that lasts for a while because I know they say that you start to get like immunity to the...

Brianna Ramos (21:32)
That's awesome.

It happens sometimes, but I feel like I know like a few kids, like SJIA kids and JIA kids who have been on the same meds for like a really long time. So I don't know if it's different then, but I think it's just different for everyone. Some people go through them like so fast, but even like people like I go through them, I've gone through them pretty quickly and I always worried about like not having more options. But every time I worry about that, like,

Teresa Troyano (21:50)
Yeah.

Yes, I'm a cracker.

Brianna Ramos (22:06)
new things are coming out. Like there's new meds on the market. There's research being done for new things. So it's not like as big of a fear of mine now as it once was, but.

Teresa Troyano (22:11)
Okay.

Good. Yeah,

that is really scary. mean, I think we're very, so when he first was diagnosed, my aunt was like, my neighbor had that, right? So was like, my God, your neighbor had this? So now she's, I don't even know how old she is, but probably in her 60s. So this is like 30 years ago. She's saying that her neighbor's son, I think it was that had that, they treated him with gold.

Could you imagine? Old. Like I don't, never looked that up to see like what the consequences of or results. When she told me that I was just like, what? But then she also told me that he was also treated, I guess, eventually with methotrexate and that helped. And it was funny because when I first heard about methotrexate and, and again, I was working in this kind of like a healthcare, you know, environment.

Brianna Ramos (22:36)
Yep. Like literally liquid gold, right? Yeah.

I've seen that, I don't know if I've talked

Rebekah Nicola (22:48)
I've never heard that. I've never heard that.

Teresa Troyano (23:04)
Everybody was like, gosh, methogexy is horrible, horrible, horrible, horrible. You know, and we didn't have a problem, thank God. They said.

Brianna Ramos (23:11)
Yeah.

It's like, I'm telling another one of those things. Everyone is different. Like we had Claire on last week and she was like, the only side effect I had, she was like, she was in her, in high school. She was like, the only side effect I had is my hair turned curly. And I was like, what? Like, I never heard of that. It's so crazy. But like other people can't even tolerate it. Um, so that's, oh no. Right. I know. So.

Teresa Troyano (23:15)
Yeah, think as you get older...

that's interesting.

I thought you were gonna say her hair fell out. I've heard that it thins your hair and her stomach aches.

Yeah, like really bad. I remember my boss was like, oh yeah, I'm like, what's the problem? He's like, well, a lot of people don't like it they can't drink on it. I'm like, well, my son is one years old, so I don't think he to worry about that.

Brianna Ramos (23:53)
you

Yeah

Teresa Troyano (23:56)
You know, people

just like say these things and they don't have like anything to validate it behind in any means. It's so, you know, so you always have to kind of like dig in, I think, because, you know, people just say things, even doctors, nurses, you know, gosh, the nurses that we've gone through and, you know, we've gone, we've had really great nurses, but then there's also the ones that are just like not that great, you know, and to question them and, know, they're not coming in, they're not washing their hands in the hospital.

Brianna Ramos (24:01)
No, literally. It's current.

Yeah.

Teresa Troyano (24:24)
This is before COVID. Well, part of it was before COVID, but I always was very like, wash your hands, make sure things are clean. And you have to call them out because it's just crazy.

Brianna Ramos (24:30)
Yeah.

Yeah, for sure.

How has it been explaining it to Jack because he was so young when he was first diagnosed? How has it been explaining it to him and him understanding it today?

Teresa Troyano (24:50)
Yeah, that's

a great question. So from the beginning, we were very open with him. We would constantly tell him, you know, this, have to do this. You know, you feel like you're torturing your child, especially like holding them down and everything. So it's, it's hard and you need, you want to make sure that he understands that this isn't something you're enjoying doing. You know, this is for his benefit. You know, how does, how does a little boy understand that a needle is for his benefit or having to take like really disgusting medicine?

because like at one point the methotrexate, we could give it to him orally and that's just like, I can't imagine what that tastes like. so, you know,

Brianna Ramos (25:25)
Yeah.

Rebekah Nicola (25:28)
So I was like,

bad. It was a very small, tiny like pill.

Teresa Troyano (25:32)
Yeah.

Well, he would do the liquid kind. Like the kind you would take, they were like, no, you could give it to him orally. I'm like, you can? That's so weird. I almost wanted to just inject it because I'm thinking he doesn't even take, you know, Tylenol good, you know, he doesn't like want to swallow it, but he ended up doing it. I mean, this is, he's, I mean, he's just such an incredible strong, you know, boy because of that, you know, but

Brianna Ramos (25:37)
yeah.

Yeah.

Teresa Troyano (25:57)
But the other thing I did was I was again, I'm like looking online, I'm doing research and there's some moms or parents out there or kids out there that wrote books about their arthritis journey. So of course I got, you know, as many of those as I could and would read those to him and, know, just constantly trying to explain it to him. And the books I feel like were very good, you know, their children's books.

and they had pictures and stuff like that. So I just did that as much as I could and any questions that he had, he would ask and I would try to give him the best answer. And the same thing at the doctor's office. The doctors have always been very good at asking him how he's feeling and if he has any questions and stuff like that. So they're very patient with the pediatric doctors and nurses are all very, very patient with the kids. So it's great to see that.

But yeah.

Brianna Ramos (26:51)
Yeah, I wish I could go back to my pediatric doctor sometimes. They were the best.

Teresa Troyano (26:55)
Yeah, I can't even imagine

when you have to switch. That must be so difficult. How old do you have to be like 18? Not 18.

Brianna Ramos (27:02)
So I went to CHOP and they kept me until like through college. So I was was able to book like appointments when I was home for breaks and things like that. And then once I like decided where I was staying after college, they like helped me transfer things from there.

Teresa Troyano (27:06)
Yeah, that's great.

Good, good, good,

Rebekah Nicola (27:19)
And

I, I mean, I switched when I was 18, cause I went out of state and it was just easier for me to manage it in like the location I was at. And I called some like offices and some of them are like, we can't take you. Like we've never, I've never treated someone that.

Teresa Troyano (27:20)
yeah.

Right, yeah.

Rebekah Nicola (27:36)
age before. So I ended up finding someone and they were like the youngest patient they had was like in their 40s or something like I was truly their youngest patient at 19. And it was a and it was fighting like because I'm like I'm in college I want to drink I want to have fun I don't want to be on these like intense like biologics or like you know things I don't want to keep stuff in my roommate and me like fridge you know like hey yeah just weird things. One um

Teresa Troyano (27:42)
my gosh.

Wow.

Right.

Yeah, these weird things in the fridge, yeah.

Rebekah Nicola (28:05)
question I wanted to ask you though, what is like a favorite coping tool or like arthritis gadget you might have to recommend?

Teresa Troyano (28:12)
So we do,

yeah, so we use the Buzzy Bee. I don't know, are you guys familiar with that?

Brianna Ramos (28:18)
Yeah, I've seen

Rebekah Nicola (28:19)
to look it up. It's so cool. I can't believe I've never heard it.

Teresa Troyano (28:20)
I should go get it, it's cute, it's very cute. Honestly, we never, why did I get it? think there was, maybe it was the time I was saying, because up until he was four, before I could hold him down and everything, he was doing pretty good with the iPad situation and just was tolerating it. But then he went through a phase where he was just freaking out and not letting us do it and.

finally, you know, the nurse was like, get the buzzy B and I had read about it online and stuff. So I did. It's cute. It's like a little, it looks like a little B if you want, could go get it real quick. It looks like a little B and it vibrates. So it's supposed to take the attention off of the spot of the injection to kind of like spread out the feeling, I guess. And you know, I don't, I don't know if it really works. I think for us, it's about routine. It's about

Brianna Ramos (29:05)
Yeah.

Mm-hmm.

Teresa Troyano (29:11)
Okay,

this is the routine. We put the lidocaine on a certain amount of time beforehand, like 20 minutes time beforehand, then we put the ice on maybe 10 minutes before. Give him the iPad during that time. So once he has the iPad, he's like in heaven, you know, because we don't really let him use that regularly. So, so he gets on that and then and then yeah, we do the buzzy baby but my husband is always kind of like move that thing. It's in my way.

I don't want to argue with him because he's the one doing it. But yeah, I think the routine is the best advice. Make sure you have a good routine and make sure you have distractions. If you don't have an iPad, maybe put on videos. Especially kids, they get sucked in so much to those shows on TV and different things. It's a good thing in this situation.

And then we always do a treat afterwards. So you can have any candy or if he wants an ice pop or something like that. We let him have that. So that's my advice for other moms struggling with it. I know it's really, really hard. And like I said, he was doing great at one point and then he just completely started to rebel against us. So we had to almost start from scratch. But then, you know, now at this point we're in a better routine. He's older now, so I think he understands it more.

you know, is willing, like willing to do it.

Brianna Ramos (30:28)
Yeah.

Teresa Troyano (30:29)
It's hard. It's hard. feel so bad when I see online the moms that are asking for advice about that. Some people do it in their kids' sleep.

Brianna Ramos (30:37)
I'm not seeing that. That would be very hard.

Teresa Troyano (30:40)
I think

my son would kill us. Like, all of a sudden he was sleeping and he felt this thing stick in.

Brianna Ramos (30:43)
haha

No, literally, I feel like that would be a dangerous situation for a lot of people.

Teresa Troyano (30:49)
I don't know, but people swear

by it. I like, I'm always wondering, like, they do it in their sleep. Like maybe the methogexate, like the small needles, but not the, not the vial, I couldn't imagine.

Brianna Ramos (30:56)
Yeah

The tiny ones.

Not ones that like actually like you feel or like hurt at all. Yeah.

Teresa Troyano (31:03)
Like that clicking one.

I think he would wake up in a, like, he would probably be terrified.

Rebekah Nicola (31:10)
I was gonna

say I couldn't imagine waking up and having my parents with a needle over me like, my God, what is going on?

Teresa Troyano (31:15)
Yeah, I feel like,

Brianna Ramos (31:17)
Really?

Teresa Troyano (31:17)
but some of the moms say that the kids actually say they want that. So, you know, whatever works. I mean, I think whatever works for you, don't worry about what other people say or think. Like just do it, do whatever works, you know. That's my advice because it's like, it's very difficult. Like shot nights, I've used to dread shot, I mean, I still kind of do, not as much, but yeah, my God, I dread shot nights.

Brianna Ramos (31:28)
Yeah.

Yeah, I definitely understand that. I would dread them as a kid too. So when I was older than Jack was, mean, even as an adult, I still would. Yeah, it is tough. But okay, so one thing that we try to ask, I guess for you, this question would work more. Obviously, it was probably very emotional, like when Jack was diagnosed, going through all that.

Teresa Troyano (31:43)
Yeah

No, I can imagine. Yeah, of course. Yeah.

Brianna Ramos (32:04)
And a lot of us carry like a lot of emotions about like, why me? Why did this happen to me? Why did I, you know, get diagnosed with arthritis? And in those early stages of diagnosis, it's like definitely a prominent question in people's minds. Did you like ever go through that or have any advice for parents going through that?

Teresa Troyano (32:23)
Yes, for sure. I definitely went through that. I mean, listen, you don't want to see your child have any type of pain, any type of pain. When you hear stuff like, you know, chronic disease, chronic illness, and that he's going to have to be on these intense medications for the rest of his life, it's very hard to deal with. It's a big pill to swallow. I think I just...

tried to find comfort in doing the research, finding like-minded people that had the same situation. remember one of the, so like I joined the Arthritis Committee for the Walk to Cure Arthritis and one of the, my gosh, I can't think of the name of the role. You guys were it, I think. Yes, the chairs, one of the chairs, his daughter who was like,

Brianna Ramos (33:07)
like a vent chair. Yeah.

Teresa Troyano (33:11)
18 years old or maybe she was like 16 or something like that. She actually was diagnosed at one, two, right? So now you're thinking like, this is 16 years ago and she's doing great. So he immediately said that to me and that was very comforting. And you have to realize, like, okay, other people have gone through this. It could be worse. That's something that I feel like I've learned many, many times in my life.

Brianna Ramos (33:21)
Yeah.

Mmm.

Teresa Troyano (33:33)
being in the corporate America, I'm sure you guys could relate. You feel annoyed about something or really, you get laid off or whatever. And you have to think in your head like, okay, it could be worse, it could be worse. So I do try to tell myself that and then what am I gonna do to advocate or make things better for the people that are going through this in the future? like, if I...

Brianna Ramos (33:46)
Mm-hmm.

Teresa Troyano (33:59)
talk to myself if if I could call that mom that was going through you know the diagnosis process not being able to get diagnosed correctly being gaslit by the doctors and say hey you know you're gonna get through this it sucks it's gonna be hard you know it's okay to be upset it's okay to be frustrated you know that's what I'm trying to do so that's why I'm trying to make a positive thing out of something that's negative and

Brianna Ramos (34:24)
Yeah.

Teresa Troyano (34:24)
and advocate

for our kids and advocate for, you know, people with chronic illnesses, people with disabilities. I mean, it's you have there's so much you have to do for children that are in these situations with, you know, schooling and all the different things that come along with it. So that's how I kind of got through it. I do feel that Jack is at that point. He has asked me a couple of times why me, you know, why has this happened to me? And that's really hard.

That's really hard for me to hear and for me to try to explain to him. Again, I just try to be as honest as possible. Obviously, we don't know why this has happened. They don't have any kind of explanation of what causes this, which is really frustrating. But luckily, we have treatments that are working.

Brianna Ramos (34:51)
Yeah.

Teresa Troyano (35:08)
I think we have to try to be grateful for that because like I said, you look at these kids 30 years ago, 40 years ago, it was even that much harder for them. So.

Brianna Ramos (35:19)
Yeah, no, definitely. think it's like a few things from what you're saying. Community is just so powerful. And like time and time again, like we come back to that message because it makes such a difference to talk to people who understand what you're going through, to hear their stories and like have their support too. And like so much of the times like you were saying, like you see kids who made it on the other side and like are living life now. And that is so hopeful too. And as like,

Teresa Troyano (35:32)
Right.

Right. Right.

Brianna Ramos (35:47)
And that's going to be so helpful for Jack. Like that's something that was so helpful for me, like as a young teenager to see like 20 year olds like having full lives is like the biggest thing.

Teresa Troyano (35:58)
Right, right. Because you just

don't know. Like it's unknown. You asked me earlier, did you know anything about our threat? Like, no, I had no clue. I mean, I was just in a complete like a bubble of I didn't know anybody with this. So and yeah, the community is key. just even I was thinking when you were talking about community and talking about like like minded people that are going through the similar things. I remember you guys did that episode with your moms. And I love that because it was so good to hear their perspective.

Brianna Ramos (36:04)
Yeah.

Yeah.

Mm-hmm.

Teresa Troyano (36:29)
on how everything transpired and how it made what they did. just having that as something to listen to was just comforting, you know? Because you're like, OK, this is from another person's perspective that went through something similar. So good. You should tell them back on.

Brianna Ramos (36:46)
Mm-hmm. Yeah, they'll love to hear that. The mom is probably want to come back on.

I know we should. We need a part two. But another thing, like just you've turned so much of what you've gone through into a positive, which I talk about a lot with like sharing my story. Like that's my why. Like if I can spread awareness and tell other people about it, it's going to be easier for someone else coming behind me.

So I think that's just really powerful. And I know you guys are doing a lot right now with our arthritis foundation and yeah.

Teresa Troyano (37:19)
Yes, yes, Jack is actually

the national, their national honoree for the walk to cure arthritis this year. So, I mean, really building awareness, being an advocate, you know, they're gonna have his picture and share his story online. And I just did an article with them. So they'll have that published. I'm not sure exactly when they're publishing it, but yeah, so, you know, it will be.

Brianna Ramos (37:27)
That's so amazing. So what does he get to do? Yeah.

Rebekah Nicola (37:27)
Yay, go Jack.

Brianna Ramos (37:43)
Yeah

Teresa Troyano (37:46)
Our local walks will recognize him too. So you know at the local walks they put the pictures up and all that. So we'll have, I believe we'll have that as well. yeah. Yeah, yeah, I'm very excited for him. It was interesting because he was the, he was a local honoree. I think he was, maybe he was two or three. I think he was two, maybe two and a half. And so he doesn't really remember that.

Brianna Ramos (37:50)
Cool.

Yeah, that's awesome. That's so exciting.

Teresa Troyano (38:14)
But he does remember like going on stage and, you know, obviously I've shown pictures and things of that nature. And then he actually also had an opportunity to go on News 12, which is a local news station here in New Jersey. And he was very shy in that and apprehensive for that. So when Emily asked me if we would want to apply for this, you know, I was like, I want to apply. I want to apply for him, but I got to ask him, you know, because

Brianna Ramos (38:20)
No.

Teresa Troyano (38:38)
I just, don't want to be that mom. You know what I mean? Like he want to do it, you know, like I don't mind volunteering my time and doing things that I can. but this is his, you know, story. This is his, so he was like, mommy, let me think about it. And then a couple of days later he told me, and I wish I had this on video, but, he said, mommy, I do want to do it because I want to help other people. I want to help other people be afraid. And it just like broke my heart. Yeah.

Brianna Ramos (38:41)
Yeah.

Aww. That's so sweet.

Rebekah Nicola (39:05)
Jack just

seems like such an amazing kid. love that he wants to help others and I think that's a testament like to you and even your husband like the support that you have given him and like I was even telling Bri before too like the fact that you've been documenting everything too like not just like writing notes down but like taking photos and videos and like how you said kind of engage with him too. It's nice to like look back on

Teresa Troyano (39:14)
No.

Rebekah Nicola (39:32)
how much progress he has made and how well he is doing. And one other question that we have when we kind of invite guests on the show and we ask like, we think that everyone with a chronic illness is a warrior in some capacity. Like, what do you think makes Jack a warrior?

Teresa Troyano (39:33)
the progress. Yes, it is true.

I just think that just the amount of things that he has been through and he perseveres through them. You know, it's funny, like some of my adult male friends will be like, oh my God, a needle, you know, and be scared of it. And he doesn't, you know, he just takes the needle. He doesn't even cry anymore. He just takes it, you know, and it's like, oh, that hurt, okay.

Next, you know what mean? Today he had blood work. No problem. sticks out, he watches, he sticks out his arm. I so I just think the strength of being able to handle these adult type things, not really complaining ever about it. I mean, you know, once in while, of course, he'll say, why me or what have you, but he doesn't complain about it. And the fact that he wants to help other people, doesn't, he wants to...

make sure other people know that they can be brave. I think he said that on one of the videos I sent you.

Brianna Ramos (40:48)
He did, yeah. I know. Did you post that one on your Instagram yet? Because I want to share it. It's so cute.

Teresa Troyano (40:51)
Yes, I did. That was

our video that we did when we submitted for the nominee for the national walk to care authority. So they asked for a video. I said, all right. And I just said, just let you say what you want to say. I'm not going to tell you what to say because again, I want this to be his thing. Like I don't want to be pushing him. But of course, you know, I wanted to do it.

Brianna Ramos (41:00)
Yeah.

Yeah

Teresa Troyano (41:16)
I love so

many people, but you you got to kind of back off a little now that he's getting older. But yeah, I just think his perseverance, I think his strength, his courage, you know, last year we were in the hospital, unfortunately he was sick with pneumonia and just his attitude just, you know, he was so positive and

Brianna Ramos (41:31)
Mm.

Teresa Troyano (41:37)
Happy like the whole time. It was so bizarre. You never see a child like you never see a person I don't know, you know many children but never see a person in the hospital that has that type of positive attitude, right? You know, of course you wanted to go home at times or what have you but for the most part it's just very What's that word? Inspiring

His strength is inspiring and has inspired me a lot in my life in the past five years. To eat healthier, to be healthier, to exercise, to do all that kind of stuff because you just don't know what the challenge is around the corner. And you need to make sure that you're...

you know, taking everything you can, don't take everything in it, right? But like doing everything you can to like make life the best. So he's definitely inspired me for that, for sure.

Brianna Ramos (42:18)
Yeah.

I love that. Well, before we wrap up, was there anything, any other advice that you have for parents or anything that we missed?

Teresa Troyano (42:32)
I don't think so. just yeah, I guess just going back to the advocate advocating You know, don't be afraid to speak up with doctors. Don't be afraid to ask questions I mean, I still feel like I do, you know, kind of hold my tongue a little bit at times My husband doesn't like it when I am too combative with them And luckily, yeah

Brianna Ramos (42:49)
You

Rebekah Nicola (42:51)
So relatable, so relatable.

Brianna Ramos (42:53)
This is

what I think.

Teresa Troyano (42:54)
Luckily,

we luckily we have a team now that is, you know, is very good. And I trust that's huge. I think you have to have that trust in the doctor, but don't have that blind trust, where if you have an instinct as a mom, that you feel like something's off. And they're telling you not to worry about it, that, you know, you should push that away. And one of the examples that I actually would want to share was

when he had the Kawasaki disease after, well, when he was diagnosed with the disease, because honestly, I don't think he had it, but they will never tell you that. So we would have to go see the cardiologist, you know, routinely, right? To make sure there was nothing wrong with the heart. And he was so sick and he kept getting the fevers and they kept telling us, oh, well, maybe it's...

this virus or that virus. Literally we had the child in a bubble. Like we never left the house except for going to these doctor's appointments. And my husband and I didn't leave the house either. I was working from home. I was working from home. We never had anybody come over. So we're like, because we wanted to contain and make sure like he wouldn't get something else to, you know, allow not allow us to get diagnosed correctly. And so we go to the cardiologist and, I'm like, well, I just don't know. He's still having these fevers and he's like blowing it off.

Brianna Ramos (43:56)
Mm-hmm.

Teresa Troyano (44:13)
blaming some type of virus or what have you. It's like you have to understand, there's a child right now that's flown into CHOP to get a heart transplant from Kawasaki and you're so lucky your son isn't that boy. Could you imagine?

Brianna Ramos (44:28)
That's crazy.

Teresa Troyano (44:29)
I was just like, I was very thrown off by that. was like, I'm very sorry to hear that about that child, but I'm trying to figure out what's wrong with my child. I don't think he has this disease and he's still very sick, you know? And you're trying to diminish that by giving me this story and making me feel bad that I'm trying to advocate for my son. I mean, it's just insanity. So I would just really drive that home.

Brianna Ramos (44:38)
Yeah.

Yeah.

Yeah.

Teresa Troyano (44:55)
of you're the mom, you're the parent, you know your child the best, you're the only one that's gonna be able to advocate for them like, you know, we should, so don't be afraid because I've been through so many times where the doctors will try to hush you and, no, that's normal or, you know, in so many different ways, not only in the arthritis, but like other, you know, my son was in daycare for three months, I mean, he had RSV.

hospitalized. So like, I've been down the road a little bit with the with having to deal with a sick child. And, know, it's it's as a new mom, too, they try to like, almost diminish what you're saying, because they're thinking you're, you know, freaking out or, you know, well, you're just a new mom, you don't really know, you know what I mean? It's it's really, it's really horrible that they treat you like that. Because I just it's just, I don't know.

not right. So.

Brianna Ramos (45:49)
Yeah, I could definitely see that happening a lot with like first time moms. yeah.

Teresa Troyano (45:52)
I'm sure you get that. I'm sure you get that too. As being like a young

woman, you get that, you know.

Brianna Ramos (45:58)
Yeah, for sure. Yeah, we have to, I mean, you always are, I'm always asking questions, like asking more questions because like it will be like base, they'll give you base level information. And then I'm like, that's not it. Like you gotta tell me more than that. Cause I leave here, I don't see you for another, however many months and I go home to Dr. Google and I get the wrong answers. So like you need to tell me everything I need to know. So just like.

Teresa Troyano (46:12)
Right. Right. Yeah. Right.

Plus, don't you think sometimes

they speak in a way that they're, you know, they're very technical, right? They don't know how to translate it into like, normal English, you know? And you're just like, no, no, no, break it down for me so that, you know, like don't treat me as your like colleague.

Brianna Ramos (46:30)
Yes, Beka says that all the time. Yes, Beka, the mythical bargain.

Rebekah Nicola (46:33)
I'm literally, I'm like, you need to dumb it. Yes.

Yeah.

Brianna Ramos (46:42)
Yeah.

Rebekah Nicola (46:43)
Or they give you like way too many options and it's like, hold on, you're overwhelming me now. Like we need to like, refocus here. Let's re-engage, you know, like I'm constantly having to do that for myself and like now for my parent as well too. So it's challenging, it's hard, but knowing that other people are going through this like does bring a little bit of comfort to the situation, you know?

Teresa Troyano (46:47)
Right, right, right, yeah.

Right, right.

Brianna Ramos (47:11)
Yeah. And you're doing what's best for Jack. Like you're getting him the carry he needs. You've gotten him to this point because you were pushy because pushy, I'm putting an air quotes, because you were asking all those questions. so you really just, you were doing what was best for him. So.

Rebekah Nicola (47:13)
Yes, yes.

Teresa Troyano (47:19)
Right.

Yes.

No,

for sure. Yeah. So I would just, I would always like hammer that home, you know, advocate, advocate for yourself or your child, whoever. because no one else is going to do it. You know I mean? Like you have to.

Brianna Ramos (47:38)
Yeah.

Yeah.

Well, thank you so much, Teresa, for coming on. We're excited to see the rest of Jack's excitement with Walk to Cure. And we're really appreciative because we know you've been listening to the podcast for a while. So we're really excited to have you on this month to share with the rest of the moms out there who are listening to give them some advice and hope and whatever else they might get from this.

Teresa Troyano (47:43)
Thank you so much for having me!

Yeah, of course.

And I'm always open to talking to other JIA moms, so feel free for people to reach out.

Brianna Ramos (48:09)
No.

Yeah.

Yeah,

can put your, we'll put your Instagram, we'll tag you on Instagram when we do our post for the episode and everything. And if we got any other questions, we'll send them your way. yeah, thanks guys.

Teresa Troyano (48:19)
That would

And yes, I'm gonna keep I'll

share once we some stuff comes out for Jack because I'd love

Brianna Ramos (48:31)
Yeah,

we'll have to share it. Now he's like, he's basically been on the podcast too. So.

Teresa Troyano (48:35)
Yeah, well, I know. And he said he wanted to pop

up here. So I didn't know. I didn't know.

Say hi, this is Bri and Beka. Hi.

Brianna Ramos (48:42)
Hi Jack, it's nice to meet you.

Rebekah Nicola (48:42)
It's so nice to meet

Teresa Troyano (48:43)
These

two young ladies, they have arthritis too.

Rebekah Nicola (48:43)
you!

Teresa Troyano (48:46)
Could you believe it?

Brianna Ramos (48:47)
We heard that you are the honoree for Walk to Care Arthritis this year. That's so exciting.

We'll have to share your video with all of our followers because we really liked it, if that's okay.

Teresa Troyano (48:54)
Yes, of course.

Okay. All right. Be nice.

Rebekah Nicola (48:57)
Jack, thanks for stopping by. You have a really great

Brianna Ramos (48:58)
Thanks Jack.

Rebekah Nicola (49:01)
mom too. You are very lucky. She is very nice. She's so fun. And we're so glad we got to meet you both. And thank you for letting her share your story with us. And we can't wait to cheer you on for the walk to cure too. Thanks for all that you're doing to support other people.

Teresa Troyano (49:06)
Yes.

What do you say? Thank you.

Rebekah Nicola (49:20)
Aww.

Brianna Ramos (49:21)
Well, thanks again, Teresa, so much. We're excited to share this. Yeah, thanks.

Teresa Troyano (49:21)
Yes, it was so great talking to guys and meeting you guys. Thank you. Stay in touch.