#14 Talking Severe Adhesive Allergies with Henry's Mom
Scott Benner
This is no ordinary contact dermatitis...
Rachel Morgan is a tenacious type 1 diabetes mom who did not give up when doctors instructed her to discontinue using her son Henry's insulin pump and continuous glucose monitor because of his severe adhesive allergy. Instead she turned to the diabetes community online and found an answer to Henry's serious problem. When you are done listening to this episode be sure to read Rachel's guest blog post on Arden's Day to see Henry's rash and find out how they relieved it. It is a fantastic read for anyone who wears a medical device that uses adhesive.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello and welcome to episode 14 of the Juicebox Podcast this episode, let's call talking severe adhesive allergies with Henry's mom. I like that. It's a little wordy, but it makes the point. Listen, real quick. Nothing you hear on the Juicebox Podcast or read on Ardens de.com constitute at blab blah. I'm not very good at the semi nothing you read on the oh my god, here we go. Nothing you hear on the Juicebox Podcast or read on Ardens de.com constitutes advice, medical or otherwise, always consult a physician before making changes to your medical plan. A full disclosure is at the bottom of Varden state.com and juicebox podcast.com. You're ready for episode 14. So no one is going to have heard any of the 20 or so minutes of us trying to make sure you can hear us hear me. But but we are starting now. We're playing me settled in I'm usually settled in before I start but you're gonna hear creaking chairs and all kinds of stuff for a second. Okay, so I'm talking today with Rachel Morgan and Rachel, are we going to say your son's name? Rachel, Rachel is Henry's mom. And Henry has type one diabetes. I'm going to let Rachel tell you a little bit about Henry's diagnosis, how old he is how long he's had type one. And then we'll get into some very interesting. Well, they're not just speed bumps. But But Rachel and Henry have had some some interesting stuff happened. And they've they've found a way around it. And I think it's going to be interesting to to hear Rachel talk about. So Rachel, take it away.
Rachel Morgan 1:42
Well, last spring, I noticed this is early March, late February, that Henry was kind of lethargic, coming home from daycare asking for milk, something he never drank. And in the back of my mind, I just had this voice like, this is like he has diabetes, and it doesn't run in our family. Not it does now but it didn't until then. And the reason I knew is you want to tell the story people want to know as I grew up with a my mom is an ER nurse. So we had this vague awareness of lots of maladies and syndromes, and I just couldn't put it out of my mind. In one night, it was right before bed, we had a water cooler, he's three years old. And he drank a cup. He just filled it to the brim and drank it. And then he handed the cup back to me and said I want more water. So I put just a little bit in it. It was right before bedtime. He drank it really fast. And then he handed the cut back to me and he said, I want big water mama. And I had this thought like is this a three year old tantrum happening? Or do I really need to call the doctor and the next day I called the doctor and we're in the office and they say oh, it's probably just a I'm sorry, I got a text just No, no, that's fine. Yeah,
Scott Benner 3:12
I think I think the whole world is very connected and understand when text.
Rachel Morgan 3:16
Right. And so then the doctor said it's probably just a cold and no problem. And then, you know, the urine test showed he was spilling over 200. And we were on our way down to the Children's Hospital for our hospitalization and education.
Scott Benner 3:35
Just like and that was last spring 2014 March 6. Yeah. Wow. So you're right up on your just just a month past is his his one year anniversary. 13 months. Yeah. So that's one of the things we're going to talk about today is what it's like to be newly diagnosed right now because I'm eight years past at Ardennes eight years past it. And I imagine it's different now than it was eight years ago. So. So how are you guys handling things? Or was the first year as crazy as I remember?
Rachel Morgan 4:09
Yeah, yeah. I think diagnosis at any age presents its own challenges. You know, if you're, you know, a young person or a teenager, you're probably learning about nutrition and counting carbs. And for a toddler because Henry was three, he's four now. You know, we're learning how to potty train differently. Because you know, you you go to the bathroom a lot more. And now he wears a pump. And you know, we're navigating that and so that it's those kinds of things. And we left the hospital. And we come home with a big bag of syringes. And they started us on injections and human log and Lantus and this sort of thing, and so we were two days out and we were taught the constant carb method. So you know, Henry will have about you know, 30 to 40 carbs per meal and Have a 10 to 15 carb snack and blah, blah, blah. And we were working with these one unit syringes and I just had this moment, it was a moment between watching what he was eating, sitting the timer for 15 minutes, giving him the injection afterwards and then trying to dial up half units of insulin on this tiny little syringe that didn't even have half unit marks. And I'm like, This is crazy, something has to change. I mean, two days home. So I mean, I knew I was aware that there were insulin pumps in college, my husband's friend had diabetes. And so I'd seen an insulin pump. And I'm like, we're getting one of those, this is crazy. And so, you know, we started doing a lot of research and pursuing that. And I, I talked with a lot of other parents, you know, say I went to a depression, the first year of diagnosis, and I didn't get that because initially after his diagnosis, it was a time of inflammation and emergency. And now that life has settled in, and this is the new normal, I understand what it means to feel, you know, down and out about, okay, so this is what it is. And that I say the emergencies passed, and now we're learning to live with this in a day to day and it's okay, and Henry will be able to do everything that he was always going to do. It just takes more planning and more effort.
Scott Benner 6:24
You know, it's funny that we, we always apply these like arbitrary timeframes to things. Because I remember after Arden was diagnosed thinking, like, you know, at one year, I'll be way better at this. Like, it's such an arbitrary idea. And then that first year came and went, and I didn't feel much better at it. And then I was like, oh, okay, well, two years, maybe it'll be two years, and I'll understand it. You know, as if, like, like, why didn't I say like it, you know, 19 months, I think this whole thing? You know, I don't know if I could say that I was ever depressed about it. But we did, we hunkered down like Arden, and I just gotten the house and stayed there together. And I feel like we spent like a year a year and a half, like figuring diabetes out. Like together. I was oddly scared to go out sometimes. And you know, I didn't want to be in the car for too long, I had ascribed all these strange thoughts to, you know, what I thought was going to make things better or worse. And then, you know, you stretch your legs a little more every day. And and then you look back and go, Why was I doing that? What did that have to do with anything? What's the difference between a 30 minute car ride and a 15? minute car ride? Like, you know, like, it's all sort of the same thing.
Rachel Morgan 7:37
Right? Or the even the No,
Scott Benner 7:39
yeah, sure. And even when you were talking about drawing up, first of all, they make syringes with half unit marks on them. So
Rachel Morgan 7:48
they do but funny thing about how prescription insurance is, trust me,
Scott Benner 7:54
but but what, what I was gonna say is somewhere back on my blog, there's a blog post about where I realized that even a half a unit was too much because Arden was exactly, you know, two years in a couple of weeks, when she was diagnosed and probably didn't weigh more than about 18 pounds. So I took a little bit of insulin, and I put food coloring in it. And then I taught myself like pressure on the syringe. So I could draw up like a dropper to because there was some there were times when two drops was enough and a half of unit would have been way too much. So I used the visual like coloring the you know, I didn't inject colored insulin into her. But just so I could see it and feel it with the pressure. And I got to the point where I could, I could draw up less than a half of a unit by just kind of like feeling the pull it was. It was a silly, silly time. So you you got onto a pump pretty correctly. Were you how were you able to talk your doctors into doing it so fast? Persistence, anger.
Rachel Morgan 8:58
Let me tell you when Henry was diagnosed, we call it early. I know some people don't believe in talking about a one C's but I think it's very helpful. He was diagnosed as a once he was 7.5. We were back in the office for the six week follow up a week early. So five weeks later, his a one C was 8.1. And the end of you guys are doing so great. You're doing such a great job at this. And my husband and I left feeling very frustrated and we go to a the university research Children's Hospital and it's about an hour and a half. We live in a small town. So when we go to the diabetes clinics, you know, every we have a long car ride to think about things. And on the way back, I looked at my husband and I said I don't need a cheerleader. I need somebody who's going to tell me about these numbers. What to do with this and that has gone to school for many, many years and can adjust these numbers like this is this is not what we need. And there's a policy and I undo understand why there is a policy, you know, Henry wears an animus pump. And in in that pump is enough insulin to keep him safe, but also enough insulin to kill him. And that's true for everybody who wears the pump. And it's it's hard to hear. So there's a lot of safety protocols and training that you have to go through. But at our next into appointment, I had done some research and I said, here's the best standard of care, we want the best standard of care. And they said, Okay, well, typically, you need to show us, you know, these many months was three months of blood sugars and how you adjusted and that you can manipulate numbers on your own. And I came with those, and I said, here are all of his numbers. We want the pump. And just in case that didn't happen, I was at the point where I was going to change this from an HMO to a PPO and drive out of state to another university hospital, where their standard of practice is if the patient and the family are willing, they will put you on a pump two weeks after diagnosis. We were going to get a pump one way, could you
Scott Benner 11:06
excellent, I think that's fantastic. And so, no, so you were able to accomplish it with the at the hospital you were at and there was no, there was no blowback, you didn't feel uncomfortable or anything like that in the doctor's office. Maybe you did.
Rachel Morgan 11:23
Henry's had other medical issues. So I think we're, we're comfortable advocating for what he needs. And so I think when we're saying, you know, this is the best standard of care, this is what we want, we're ready to do this. Yes. And you know, some some of the windows were like, Yes, let's go, let's do this thing. And some of them were like, well, and it was actually, some of the more the nurse educators, the CDE, were a little more hesitant, and they're like, Okay, let's, let's wait on this. I'm like, no, let's not, let's slap that CGM on, let's get this pump. Let's go.
Scott Benner 11:59
I find not just with diabetes, but in most walks of life, people are comfortable with what they're comfortable with. And before long, they find themselves adhering to practices and they don't even know why anymore. It's just because this is how we do it ends up being the, you know, sort of the, you know, the rallying cry like, well, this is how we do it. Well, what if we did it like this? I can't even think of it like that, you know, it takes somebody to come in and say, well, it's gonna happen anyway. So try to get your mind right. And, and we're going to move forward, because what's the worst that can happen? Especially if you're, you know, I do understand sometimes that the rules around newly diagnosed people are so generic, because the doctors and nurses really can't know, the level of understanding or commitment that the person sitting across from them has. It's almost, it's almost like a speed limit. You know, like, you know, sometimes you come to a corner, and it says, You have to slow down to 25. Well, some people come through that corner in a Porsche and are like, you know, what, I could probably go through this corner at like 55. But we can't do that. Because the first person that comes through when it's 25 year old dad, you know, Dodge Dart is going to let go rolling off the side of the road. So I get that, but it is up to you to then speak up and say, Hey, I'm driving a Porsche. So what I'm saying is, I don't think people have to follow the speed limit in corners, if they have really great sports cars. And it sounds like you are a, you're a sports car in the diabetes world. And you didn't feel uncomfortable telling somebody that and I think that's fantastic.
Rachel Morgan 13:37
My mom is a nurse and she's actually she's, she has a DNP. So she's now actually nursing professor. And, you know, we grew up hearing medical language and stories. And I know, I know, in my heart, that's why we caught this so early. And I think that also makes me comfortable advocating for the care that he needs.
Scott Benner 13:58
No, I it's excellent. And I hope a lot of people take confidence from what you just said, and, and because I do believe that there are far too many people that walk into those offices with a firm understanding of what they want. And don't find the courage to, you know, be able to summon up that courage and say, hey, you know, and speak up for themselves and advocate for themselves so good for you. And I hope that that spills over to other people.
Rachel Morgan 14:23
And it's hard to I mean, I can understand I hear and I read a lot of things, you know, through the DRC and you can see parents debating about well do I put a pump or I just the idea of wires or something attached is just so hard, but and I I can understand that perspective. But so so was the dosing, you know, the multiple injections and that may work for some people. But for us, it wasn't working. There was a lot of anxiety around you know, mealtime and injecting him and if he wanted more food, we would have to go back and do it again. That was the point where Henry was choosing not to eat things. Because he didn't want a shot.
Scott Benner 15:06
Yeah, I have to stop Arden sometimes from she'll show, even if she needs to test because she's so accustomed to the Dexcom. And not testing at certain times, like even if I'm like, hey, you know what? I'm not sure if I trust that CGM. Why don't you test I'll see her start to, you know, to speak like, oh, I'll just skip the meal. And I'm like, no, no, no, we can't we're not doing that. You know. But with shots it is it is prevalent, and I could see how that would would get into your psyche after a while, you know, am I hungry? Or do I not want to needle like, which is more powerful for me right now? Well, you know, so say you got a pump, and you like it. But then something started happening that made the doctor tell you that you shouldn't, maybe you would have to get rid of the pump. And this is not something that happens. I think to the degree it happened to Henry, I don't think it happens to people very frequently, although I do see people struggle a lot with it. Not quite as you sent me some pictures, not quite as harshly as Henry got it. But can you tell people what happened?
Rachel Morgan 16:08
Yeah, yeah. One one week before we got the pumps, we started pumping at the end of May. He was diagnosed in March, we started pumping at the end of May. One week before we got on the pump, we got the Dexcom and that was like the heavens parted. You know, man arraign down like, wow, I we can do this thing now. You know, I could see his numbers. It was amazing. Like next week, we're on the pump. And we were golden all summer long. And so we were taking long car rides, we were going swimming, this was great. We could we could see this. He started the new daycare that gave a lot of confidence to his teachers in the classroom. And then in early October, I see this huge rash start to develop around the Dexcom. So I take it or remove it. And it just it encompasses in his entire torso. He was wearing it on his lower back. And it just it goes up his trunk up his neck. And one morning he woke up and his face was red and swollen. And we took him in to his pediatrician and his pediatrician has a son who also has type one. And she said this is a tape and adhesive allergy. You have to discontinue everything immediately. Pomp, Dex, calm
Scott Benner 17:30
everything you hear like the cartoony movie screams in your head when that happens. Like no, no, no, like bells and whistles from like Bugs Bunny going off and everything and every ounce of your hope and energy just drains right out onto the foot. Right, right. Just you're just like, wow, you felt Did you feel like you were right back the day he was diagnosed? Right? Yeah,
Rachel Morgan 17:51
yeah. And, and worse than that, because I now saw what these tools together could do. And you're asking me to give them you know. So I tried a barrier with the Dexcom on his arm didn't work. And he had just these huge burns huge burns
Scott Benner 18:12
when I put up this show and in the show notes can I put up a picture to from him so people can see what you're talking about? Because it's it's significantly more severe than when you just see somebody on Facebook? Oh, look, I'm having a reaction to that.
Rachel Morgan 18:24
Oh, it's not it's not your contact dermatitis that your doctor will tell you what it is. This is a systematic
Scott Benner 18:29
immune reaction no matter where it's touching him It affects his whole body
Rachel Morgan 18:33
and his entire body. And I mean type one is an autoimmune disease. So it makes sense that other autoimmune phenomena happen to people that have type one right tense celiac and other things and this is you know, Henry's additional autoimmune stuff that's happening. And thankfully, through a long, a high school friend who had type one through her mother, through friends for life, children with diabetes, she says, Hey, I know this nurse, she she lectures nationally about this stuff. So I get this call from Natalie billini a CDE affiliated with children with diabetes, who's amazing. I'd sent her the pictures. She said here's what you do. You don't stop the pump, you take that Dexcom off. And through her advice and through some research I've done with ostomy and care for people specifically that have called the colostomy bags. I found some products and so here's here's what we came up with. We will uh, discontinued the decks she said that those Burns is what she called them go all through all layers of the skin and will probably take six months to heal. And that was very true. We saw them finally go away this past February. But so we quit prepping his skin with alcohol like you had mentioned in a previous podcast. Just like never ever, ever do that. So we wash it with a antibacterial soap, warm water, let it completely dry. And then I use an inhaled steroid like Flonase. That's meant for asthma, but I use it off label with a prescription topically on his skin, where I'm going to apply it. That was also another long discussion in the Windows Office, then I use a crane barrier kavalan barrier, that's what folks with colostomy bags will recommend for wound care. And then I put down tegaderm H P, not tegaderm. He's allergic even to tegaderm. So yeah, and I didn't know that this existed until this wonderful woman, Natalie sent me through the mail her own supply of tegaderm HP, she also has rashes. She's lived with type one for 40 some years. And so we then just put the site through them. This was a contact detach with Animus. So we put that right through the tegaderm. And then another layer of tegaderm on top of it and then the detach the portion on top of that. So none of the adhesive is actually touching his skin. And so we're we never quit the pump. We stayed on the pump. But we are not back on Dex yet. We're trying to get some IGA and IGE levels at this next endo de which is next Tuesday, or endo is great with this. So he's talking about maybe a decent desensitization process, seeing what's going on. But I think I'm going to try something similar after next end of day to get back on decks. And you see what
Scott Benner 21:48
the only thing you said that confuses me is why could you try to continue with the pump but not the Dexcom? Something about the wire? He was every and he said, Okay, every you want to eliminate something and kind of boil it down to one thing and start over again?
Rachel Morgan 22:03
Exactly. They said the reason they wanted us to go off the puck completely. They said any adhesive that is touching his skin will continue this flare up.
Scott Benner 22:12
Rachel, do you have a blog? No, would you consider writing a guest post for Arden's day about this process? So it'd be great, excellent, excellent. Because the extent of my you know, I can only talk about the things that are affecting me, I don't, you know, suppose to know things that aren't happening in my life. So when I wrote the blog about how I stopped using alcohol, you know, that's as much as I can offer people, but you have a much more, you know, a much more detailed process for a different situation. I'd love to share it with people so that I'd be able to talk about that later. But that'd be great.
Rachel Morgan 22:50
It's not uncommon. I mean, I was on the phone with Dexcom demanding to know what's in their adhesive. I mean, they don't they don't know,
Scott Benner 22:57
they don't know you're using groundup tires, which I'm sure they're not.
Rachel Morgan 23:02
So and you I'm thinking long term here, if this bionic pancreas happens, you know, this, they're using this off of Dexcom lampstand, the adhesive has to be what it is. So it can do this. So I'm thinking Henry long term, like, you know if you know, this comes out when he's 18. And this is the best standard of care. And this, I want him to be able to do that. So we have to figure out what the workaround good for you again,
Scott Benner 23:24
you are proactive as they come. You know, I just want to jump in real quickly. And let you know that there is a very thoughtful and well written blog post that Rachel gave me for Arden state.com, you can go to Ardens de.com. And right now it's under recent articles and featured. But if you're listening to this in the future, and things have rolled off the front page, just go to the search bar and search for severe adhesive allergy. And you will find the blogpost that Rachel wrote, I'll tell you why I'm really behind what you're saying him for a number of reasons. But this one specific reason. And once or twice, I've probably mentioned my friend Mike, who was diagnosed when we were kids in high school. But Mike got very comfortable with shots and you know what he was doing? And then when he looked up a number of years later and wanted to kind of adjust to how things were happening. Things had changed so many times in the 20 years, that he had that like frozen moment where he was like, well, maybe I shouldn't do anything. Maybe I should just stick with what I'm doing. He finally you know, we finally he found his courage to move up and you know, and get away from you know, he wasn't even doing multiple daily injections. He was just doing you know, like getting up in the morning and like literally, like hold his hands up there going. I think I'm going to be about this active today and give himself you know, insulin that would last until he took it again at dinnertime. And I do think that can happen like I'm not a proponent of switching just a switch. You know, I wouldn't I wouldn't drop Ardennes On pump because another insulin pump came out. But if I look up five years from now, and something like you said, like the standard of care has accelerated or changed or taken a jump. I'm a huge proponent of keeping up with it. Because I don't think you want to be the person who 20 years from now is going Oh, no one does it like this anymore. Yeah, well, here's
Rachel Morgan 25:19
here's another example. When Henry was diagnosed, he was actually in diapers, which makes checking for ketones really difficult, right? And so there is a blood ketone checker. And I found out about that through a subsequent appointment. I'm like, Why does everyone not have this? Because by the time you see ketones in urine, that's two hours. Oh, so why do we not have this immediate ability to check serum ketone? You
Scott Benner 25:47
do have that we have that that meter? It's fantastic. Yeah, I don't use it very often. But when I use it, I'm happy to have it, that's for sure. Yeah. I'll put a link to that. I have a blog post about that meter, I'll put a link to it in the show notes, too. It's just I mean, it's checking ketones with a finger stick. And
Rachel Morgan 26:06
it's like, it's like checking glucose. And it's a
Scott Benner 26:09
lot like not getting peed on to. So just, which is just an added bonus. Well, so you've been through a lot already in a year.
Rachel Morgan 26:19
Yeah. Henry's also had to stomach bugs. So we've gotten to go to the ER and be hospitalized and, you know, all kinds of exciting type one trials,
Scott Benner 26:32
how did you find? How did you find the community online? Because it strikes me that this this conference, and I'm sorry, I didn't jot her name down, but the person who helped you with with the rashes I mean, that's another example of how, how tight and open and caring this the diabetes community is and how people are so willing to help each other constantly. But how did you What was your first kind of foray into it? Did you find a blog or Twitter chat? Or how did you how did you find the community the first time
Rachel Morgan 27:05
I, I found several blogs, six until me, your blog, Scott's blog. And then I found the through through a personal connection that I was explaining the friend from high school children with diabetes, and that, you know, they have got lots of links there. And we're actually going to go to the friends for life conference in Florida this summer. And so, you know, one one, excuse me, one blog would lead to the next and especially I think I found so many blogs, because there were so many problems with the rashes that we had to saw. And there are a lot of Facebook groups as well. There's some for animus CGM in the cloud Dex calm. There's Dexcom rash Facebook
Scott Benner 27:51
group, so just made your way through all of it. Oh, yeah. joined all of them. Yeah, I say sometimes, that I think that the day you're diagnosed, somebody through doctor's office should mention that there's a there's a large contingent of people online talking about diabetes, and that that's a good place to go. To learn. We,
Rachel Morgan 28:11
we were told about glue, which was I went on there. So we were told about glue and then I found diatribe. And those are good places to get information about research. And you know what, what's, what the latest developments are?
Scott Benner 28:28
I've brought up diatribe in past episodes because it's run by, by maybe one of the smartest people I've ever met. So you can you can trust what comes out of diatribe.org that's for certain. I have to apologize to you. There are so many noises in the background. I don't know Basil is just snoring his head off. Arden's blood sugar is a little out of control at the moment. So you can hear my Dexcom app is beeping in the background. I'm doing everything but banging on the table. And I don't know if it's coming through to you or not. But yeah, we're having our own little trials and tribulations today. I think it's possible. That Arden's pump is coming up on 72 hours it might be giving in a couple hours early. So we're now I'm just now randomly bolusing numbers I'm picking numbers out of the air. I'm like, try another unit, do another half do this, turn your basil up, drink more. But to be it to be perfectly honest, if it doesn't, if I don't see a change in the next probably by the time you and I are finished, I think about 30 minutes or so I'll probably pack myself up put a baseball hat on because you saw me when we were talking in the beginning I'm not I'm not right to go outside yet. And I'll probably go over to the school and we'll change our pod and get going because I just don't like I think I'm a lot like you I just don't like waiting around to see what's going to happen. You know if if there's enough markers here to say that something needs to happen. I just don't like waiting three and four hours to go. Okay. Yeah, I was right. You know, we need to change this pump now. Right? So I like to proactive, you know, proactive without being insane and kinetic, you know, like, I don't ever want to arm to look at me and go, Oh my God, that guy looks like he's vibrating inside, you know, because I'm not, but but I don't like sitting around and waiting.
Rachel Morgan 30:18
Well, it's hard you know, it's a I think I said it to you in an earlier communication but sometimes you feel like you live in two hour increments you know. So you give the insulin you wait for it to peak, then you adjust from there. So there's there's a lot of anxious waiting. Yeah,
Scott Benner 30:33
yeah. And that frame, that frame of time is different for so many people like your people's insulin reaction times vary so greatly to like, what you say is two hours to somebody else might be three hours, some people four hours, depends on the insulin you're using. I could I've lost this superpower. But when Artem was first diagnosed, and we were just using, you know, injections, I could tell you almost to the moment how long an hour was without any time Peace whatsoever. Like if you just said to me, Scott right now speak up in an hour, I could do it. I had gotten so accustomed to testing and testing and testing, because, you know, it's just it's I don't know how well people who, whose children aren't tiny, under don't understand that but you know, 18 pounds, and art and not really able to communicate how she feels she's two years old, like all these all these different things coming together. That testing was all I had, you know, and, and I would test it at real weird increments, to try to figure out what insulin did and what food did. And that's why when the CGM came, it was that was a huge burden from from everything it cut down on so many of the tests. And it showed me that maybe what I thought was happening with the food, you know, I was on the right track, but I didn't I didn't nearly understand that as well as I as I could have ever hoped to until I could see that trendline. And so I'm real hopeful for you that you're gonna get it back soon, because so does Henry have any other endocrine issues? Or does the allergy and the diabetes seem to be at for him.
Rachel Morgan 32:16
He's allergic to penicillin, cephalosporin and sulfa. So basically every antibiotic that he could have, which correlates the endo said with tape and adhesive allergies.
Scott Benner 32:29
So my wife has a penicillin allergy. And she has a thyroid condition. And then Arden has type one. Kelly's grant Kelly's my wife, Kelly's grandmother had celiac. And one of my nieces has a shaky immune system. And it's interesting, it only seems to be the females on my wife's side of the family. Now to be fair, I'm adopted. So we don't have any actual data from my side of the family. But on on Kelly side of the family, it seems to just affect the females, which is, but they all have something different. Nobody, there's no duplication, I have an issue. We have
Rachel Morgan 33:11
autoimmune issues on both sides of our family as well. But this will be the first instance of type one. And I thought it was very interesting. I mean, we're you know, we were down in Iowa City right after diagnosis, and they've got, you know, all the docs in the room and the nurse and you're like, Okay, he does have type one what other autoimmune diseases right in your family. And that's when it kind of clicked with me. Like, that's what this is. You know, that's, that kind of makes sense. And I don't think I really understood that type one was an autoimmune disease until that point,
Scott Benner 33:46
I wish someone would have said that to us, because it took a number of years before I just really by happenstance was, I don't know complaining or explaining that my wife wasn't feeling well, during one of Ardens, endo appointments. And our nurse practitioner turned to me and said, You need to take her to an endocrinologist endocrine issues run in families and I was like, what? Like, like, you know, she's like, you're describing something, I think she should go to an endocrinologist for I think she has a thyroid condition. And that was huge for my wife, because not to get too far off diabetes, but my wife had already had that thought years before. And she went to an endocrinologist who tested her and said, No, your, your tests are within range. That's not your problem. And so we finally found an endocrinologist, where my wife could say, Look, I don't honestly care what the test says, treat me like I have it and let's see what happens. And one guy who was willing to just give her Synthroid and give it a shot ended up saving her because, you know, for years before that, people were just like she was, she had started like, she was losing her hair. She was lethargic, she was you know, you know, gaining weight for No reason and all this stuff. And every time she'd go to a regular doctor, they would just they brush her aside, they'd be like, lose weight and come back, you'll feel better. And she'd be like, You don't understand, like, I'm not doing anything differently than I did before this was happening to me, this one doctor who was willing to listen, these two beeps from the Dexcom are gonna, they're gonna haunt me today. The, the one doctor that was willing to listen, you know, took a leap gave her the Synthroid, and I will tell you that in like, three days to a week, it started to change her life. You know, and sometimes that it's just another good example of like, you know, sticking up for yourself is, is really the thing to do. I mean, I know, I'm probably repeating myself from past episodes, but we are conditioned to listen to certain people in society, doctors, police, you know, firemen, like, you know, teachers, like there's some people who you just, you would never consider questioning when they're speaking to you. But, you know, sometimes you have to, and, and don't just be, don't let the four year old inside of you look up at that doctor and think that that's a magic man right there, he knows everything I know, nothing, you know, especially with diabetes, because you don't have to live with it for too long before you start getting more insight into the disease than probably the doctor you have passed. So, you know, I'm a big advocate of advocating for yourself. And
Rachel Morgan 36:24
these are, these are our children, right? So that's, you check that that other level, you would do anything
Scott Benner 36:30
for your kids, you can't just throw your hands up and give up. I mean, that's not you know, you know, it's not you. It's not, it's not like, Oh, I've given into the idea that I'm gonna wake up every morning and my heels gonna hurt for the rest of my life. Like, you know, like, it's, you gotta you have to keep trying and keep swinging. And, and, and, you know, if the doctor fails, you go online, ask other people. I mean, that's the best. I mean, that's really the best resources is, like you said, there's all these great places to go online, just ask your question out loud, maybe somebody will just say something that will clue you in and get you moving in the right direction. Not that they need to give you the, you know, the absolute answer, but they could they could get you moving and, you know, get you thinking about something you hadn't thought about before. Like, like I said, with my wife, or, you know, any number of other things, or you had happened with the with the tape allergy. Henry's in preschool.
Rachel Morgan 37:20
He is he's in preschool. And we we love found a good one. We did my husband and I both work at the University. And they have an on site daycare. And it's been amazing. The university we work at, one of the things they're known for is their education program. And so on campus, they have all of these amazing students who are studying to be elementary and middle school, high school teachers, and they all work in this daycare, as well as the full time adult staff. And I think that we've had a couple kids who specifically babysit for us. And there's a couple of the students who will come in and do his carb counting, and specifically help him through lunch and snack time. And they've been so amazing. And one student said, I just think about the students that I will have in my classroom that will have diabetes, and it's not going to scare me, I'm going to know what to do.
Scott Benner 38:18
Yeah, so So you're you're doing this thing. Like Henry's actually helping other kids in the future, who might not even have diabetes yet just by by him being there and and allowing these people to help him.
Rachel Morgan 38:32
That's right. All these future teachers are being exposed to that.
Scott Benner 38:36
Yeah, you know, I I haven't. It's not out yet. But I'm in the middle of recording an episode with Paige Kennedy Paige was the friend of will will over how I'm going to say well, his last name wrong. The egg crack challenge. We'll we'll start at the egg crack challenge and has since passed away. And I'm in the middle of talking to Paige and I'm about to talk to Will's mother and kind of edit the whole thing together but pages is on her way to medical school. And everything she's learned from the egg crack challenge about diabetes, even though she was you know, good friends with well for all through high school and college and even dated him for a time in high school. She said she still didn't have a real firm understanding, excuse me of type one diabetes, even being around it that much. It's only since his passing that she's gotten involved in the egg crack challenge that she started to hear from more people and really understand the you know, the depth of what it means to have type one diabetes and that might end up you know, informing what kind of a physician she becomes one day so it is really just people helping people in ways that you don't imagine. You know, if you stopped and if you sit back and really think about it, your mind would never would never come to that it would never say Hey Henry is in a in a preschool where Are there kids learning how to be teachers? And one day, you know, one day there'll be some little, some little kid or in a in a fourth grade class who is having an easier time because Henry, you know, Henry's preschool teachers, their teacher now. So that's, it's really kind of beautiful. So good for you look at so no, no problems like you hear a lot from people about especially a preschool not you know I'm a stay at home father I've been one for I'm not even I don't even want to say it's gonna make me sound old, but for a really, really long time. And even though Arden didn't need preschool, we did want her to have some of the socialization aspects of it. So I tried to find one where she could just go like a couple mornings once in a while. And I finally did, but the extent that I was able to, to make happen for Arden was basically she went into the room, and I sat out in the vestibule.
Rachel Morgan 40:58
Yes, we've done that with some summer art camps. Yeah, it's, it's hard. It's especially with a young child that cannot articulate, I feel low, I feel high. You know, you're putting a lot of trust in that in that caregiver or that facility. You know, we're, we're affiliated with the university, we're public university. And the it's been amazing. The director had us in there, we completely trained the entire staff during their orientation. People checked their own blood sugar's and it was very funny. One of his primary teachers, her blood sugar was I think, 76. And she's like, am I supposed to drink the juice box right now? This is this. Okay. So it's been amazing. And we've used some of the resources that the ADA has got a lot of PowerPoints and things like that for people to take into schools. But I have seen so many instances where people will post in a lot of these online forums and say, hey, the preschool just said, My son or daughter can't go here anymore because of type one. And that's just
Scott Benner 42:05
heartbreaking. Yes. And here's the worst part. Sort of understandable. And I know that a lot of people won't agree with that. And I, but if you're, if you're, if you're in a situation where you think to yourself, either, you know, I want to, I want to hope that when these kids get turned down, they're being turned down, because because the school is saying, Look, I don't think we can give them the proper care. And I don't think it's safe. I guess, I guess the cynic inside of me says they're doing it for, you know, for, for legal reasons, and they don't want to be held accountable for anything. But I mean, I can understand somebody saying, I don't think this is something that we can do. And it's it's disappointing and heartbreaking that this is happening to the kids, and I just I'm stuck right in the I'm not in the middle, I'm more towards the side of hey, screw you, you have to help us. But I do get it a little bit. You know, like I can understand being scared of it. If if, you know, I've seen that look on, on teachers faces on friends faces, you know, friends, parents faces, they, they want to do the right thing. They're not sure if they know what the right thing is. And I think sometimes all the education in the world doesn't bring them even close to where they would really need to be if something really went bonkers. And do you do you have a Do you have that worry ever that that if something went nuts with Henry that there just be a lot of frozen faces and nobody would know how to react?
Rachel Morgan 43:41
Yeah, I mean, being a parent of somebody with type one, I think means you'd have all kinds of new worries and fears that never leave you. I I feel pretty comfortable where he is now. So I honestly I've worry about school and in his 504 and that sort of thing and, and because he will be young he'll he will This is the life he will have known as a kindergartener, you know, he does his own finger poke sometimes if he wants to help we don't you know, force this on and we talk about numbers and carb counting and checking his blood sugar and not testing it and you know all of this stuff and so sometimes he wants to help but he can't be totally responsible for that. So I'm think about the future a lot but you know, if he were to need glucagon, for example, I think that they would they would be prepared for that so that that we've taken his old expired glucagon and like okay, here's how you do it. Here's the orange and you know, have at it and let people train with those as well.
Scott Benner 44:49
I I've had a couple of times, once was with a with a friend of Ardennes it was a parent of a friend. And after multiple multi Trouble multiple times of art and being over there and playing and doing things or a party at their house or something. And I've had all these conversations and explained all the things that I felt like I needed to explain and not try to overwhelm them, but just give them enough. This person comes to me one day, and just we're just kind of a quiet moment, we're sitting around and they say, you know, I don't think I completely understand the diabetes thing. And I was like, Oh, do you have a question? She goes, Yo, what's it with all the sugar? And I was like, Oh, my God, like, she had no understanding whatsoever, just, I would have done just as well. It's just leave Arden in a field by herself. You know, it really, it baffled me because we had long, long conversations, but those are the people who end up saying after, you know, I don't believe I try not to believe this when people say, oh, you know, if I don't think I could handle this, if it happened to us, and I, you know, my first reaction is always, oh, it's your kid, you would figure it out. But now there's sort of this heartbroken little part of me who thinks that there are a certain segment of people who would who can't handle it? And I do wonder about those kids, you know, sometimes, you know, are they are they somewhere right now with a person who just never really could figure it all out? Or get the math of it? Or, you know, take the pressure and how are they handling it? And, you know, because I tell you, I would have bet money that this person understood. You know, like, I thought I was being I explained it to a number of people. I've talked in front of large groups, I feel like I can talk about diabetes in a, in a cogent way. You know, that's understandable. And she just didn't know she was just lost. And I was like, okay, so Arden was over there again recently, and we just, I just ratcheted it up, you know, the level of, you know, our communication. We just ended up talking a little more through text messages. But yeah, I mean, it really does. Arden's had teachers who I knew for sure, understood. And she's had teachers that I've thought, wow, I think if anything really goes wrong, all that person's going to do is call the nurse's office.
Rachel Morgan 47:10
I can see the school that Henry will attend, from the edge of my blog,
Scott Benner 47:16
to your running shoes on.
Rachel Morgan 47:17
Exactly
Scott Benner 47:19
what you know, you know, what's funny is, this happened to us a couple of days ago. So if you listen to this podcast, you pretty much know that Arden's weren't a Dexcom CGM, I can see her numbers on my cell phone. And she and I talk extensively, sometimes throughout the day by text messages. And we handle her blood sugars completely by ourselves. She's at this point hasn't been in the nurse's office for a diabetes related things since I think the beginning of third grade and she's about to finish fifth grade. And so the other day, at the end of the day, she had gym at the end of the day. And I saw her blood sugar, it started kind of trending down it was it was a little high to begin with. When she left for gym, she was like 180 and it was trending down and just kind of a diagonal down arrow and it was just coasting down, I felt pretty comfortable that she'd be back from gym before it before it got crazy. And maybe I didn't even think it was gonna go low. But there's so much I was so comfortable I got in the shower. And I think right now that any person whose child has diabetes completely pletely feels me when I say I don't think I got in the shower until like 230 that day. And so, so I'm in the shower and my phone's beeping again. And I look over and now it's she's like 160. But now the arrows straight down. So for people who don't use Dexcom straight down could mean that her blood sugar is falling about two points per minute. And so I was like, Okay, I still have time I looked at the clock. I knew when Jim was going to be over. But then it went to 130 straight down. And now I'm telling off a little faster. And looking for that second ad I'm texting her Hey, Jordan, Hey, Jordan, Hey, Jordan, Hey, Jordan, like you know, over and over again. And nothing she's not responding at all. And then it was 120 straight down and then it was 110 straight down. And at this point now now I'm just texting letters hoping to get her attention or the teacher will hear it. But in my heart, I realized they're in gym, her bags off to the side with their phone and the kids are probably screaming, nobody hears this. But I don't want to panic. I pride myself on not panicking. But 110 became 100 became 95 and art in school is a block from here. And before I knew it, I couldn't stop myself. I had a shirt and a T shirt and a pair of shorts on and I slipped on a pair of shoes. And I drove across the street and it was 85 and 80 and 75 and I got to the office window and you know in a post 911 world you Getting into my kids school, you know, takes an act of Congress, you have to have the photo ID and you know, somebody has to come vouch for you and you know, and everything else. And I went to the window and I looked at the woman, I said, I need you to trust me, I have to go in the building right now. I will come back and explain and she buzzed me right open. I said, Where is Arden and she looked in the computer, and she's like, she should still be in gym. So I run down to the gym, probably scaring small children, scaring myself, worrying that the school is going to think that this great plan that's working perfectly for us is not a great plan anymore. Like that was my biggest concern. I was stuck in between art and safety, and not wanting to throw what we were doing off kilter at the school. And I walk in the gym, and I look at the gym teacher, and there's like three kids left in the gym and I went Arden and he goes, she just walked back to class. And I looked at my phone and her blood sugar's 60. And it's still straight down. And I'm like, Jesus. So now I'm speed walking through the school, trying to remember where are these classes, because I'm not there that often. I'm texting her and texting and texting her. And just a second later, I get this text from her. I'm probably about 75 yards from her class and I get this text message. Why are you texting me so much?
And I just texted back drinking juice your low, and she goes, Kay. And I stopped myself in my tracks and I'm like, Okay, I'm not gonna go find her. I'm not gonna go panic. I'm not gonna go tell anybody. Like, it's good. I'm okay. It's going to be okay. And so she, she, I text her back in a second. Did you drink the juice? She said, I did. Do you feel dizzy? She said, I don't. I said, if you feel dizzy, I want you to text me back. She said, Okay. And I turned around, and I calmly walked back to the office and said to the woman, I'm really sorry. You know, I just couldn't contact Arden and our blood sugar was in a bad way. And everything's fine. And thanks very much. I couldn't get out of the building quick enough, because I really didn't want somebody to grab me and go, Hey, you know. And so the woman at the front did say to me, she goes, Just take a deep breath. And I said, I'm actually fine. I think the out of breath thing is just from being out of shape. And she and she laughed and, and, and I and I got outside. And I just took this big, deep breath in, and I just went back to my life. I'm like, It's okay, like, I in a heartbeat. I thought I didn't overreact. But I guess I ended up overreacting because if I could have solved the future, I would have been alright with her texting me back at 60. And being like, Hey, it's me. I'm sorry. I didn't hear I was just in gym. And, and she was, you know, she was absolutely fine. But there is that part of me that went back over it again afterwards. And I thought, when's the last time I actually spoke to the gym teacher about this? Like, what do they really know about it? You know, like, what does her teacher really know? It's April, it's almost may school's almost over. I you know, at the last back to school night, her teacher had no idea. She's like, I wouldn't even know Arden had diabetes. If I didn't hear beeping, sometimes I'd never think of it. And that, you know,
Rachel Morgan 53:05
that's in, we know what this disease can do. And that's why it creates those moments. And I think that there's it's very easy to have a perception of like, oh, you can and can't eat this. And what is it about the sugar and you take insulin, you're fine, right? It's
Scott Benner 53:22
a real oversimplification, because I don't think there's any other way.
Rachel Morgan 53:26
No, the drug that makes life possible could also end it. And that's in your, you are trying to replicate a human organ, you know, we've got a village of people around Henry trying to be his pancreas. And as much as we love him, and as much as we know, like, we can't do what his pancreas did,
Scott Benner 53:46
right? Yeah. I just found myself explaining this to a person the other day, just the idea of the, the amount of time it takes for manmade insulin to start working and how it it takes a protracted amount of time to finish what it's doing. And, you know, I think I said to the person that I was talking to, I was like, you know, if you took a if you had an apple right now, I said, I don't know what Apple might have eight or nine carbs. And I said you'd eat it, maybe your blood sugar would bump up a little bit, maybe it would go to 110 and then you know your your body would bring it right back again in a very quick and reasonable amount of time. I said by the time your blood sugar was back to where it started. Arden's insulin would just start to work, you know, and her blood sugar would already be moving up and then there would be that fight between the insulin and this I tried to describe how if I use too much insulin, once the carbs and the Apple are kind of going from her system that her insulin wouldn't know to stop working. It would just continue to sorry, there's an alarm to check Ardens CGM that it wouldn't notice stop working it would just keep going and it could just keep dragging your blood sugar down and the the empty looks that I was getting back. Whereas was my you know You know, I've said before, and I'll say it again, like, I want people to understand, but it's not reasonable to expect everybody to understand diabetes or anything else that's going on in somebody else's life completely. But the difference between having a real firm grasp and deep understanding and understanding it all, was what I was seeing on their faces. Like, I know that they were looking back at me like, oh, diabetes, I just thought that meant no soda, you know, like, they can eat Yeah, it was just a real, it was a disconnect. That was it was. It's not, I'm not heartbroken by it anymore. But to me, it tells a real story, and it tells me that we are we are going to be responsible for art and safety throughout her life, and she's going to be responsible for it as an adult, like counting on somebody else. Is, is an exercise in flipping a coin. Really? So yeah. Well, that brought things way down something. Something good must be happening for Henry did he tell me about going to front, you're gonna go to friends for life. We are coming up on an hour, but you're gonna do something that I want to do every year and never get to do because my kids played too much competitive softball and baseball. But where are you going?
Rachel Morgan 56:16
There. This was the same CDE that I had mentioned. And I thought this woman has allowed us to stay on the palm who's milling her? US her own supplies. We've got to go there. And I've heard so many good things. It's called children with diabetes. They have a website and they do a friend for life conference. I think it has an international drawl. Mainly Americans been reading folks from Ireland, England, Canada are coming in. It's in Florida. It's in the summer. And from what I understand it's a very positive experience because they they teach the entire family about what does it mean to live with type one you have presenters from the the guy who's working on the the bionic pancreas, you have folks who've lived with it, I think, the Gary Snyder who wrote think like a pancreas, he presents there and just you see families that, that live this life, and it's a good life. And they they're there. They commute and they celebrate together. And I think we want to be part of that. It's important for me that Henry see other people wearing pumps, particularly little kids his age, you know, he's met some adults that were pumps, but he's not seen a little kid his age. And I want I want him to see that and experience that and I'm looking forward to it. I haven't been but I've heard nothing but amazing things about it.
Scott Benner 57:41
Yeah, yeah, I again, I've been to a local one in Philadelphia like a breakout one, I guess. But I've never been to Florida. I have my friend Moira Maurer, McCarthy. She gave the keynote I think the last couple of years there. I don't know if she's doing it again this year. But she's a fantastic speaker and her daughter's a grown person with type one. Yeah, I wish I could. I wish I could go. But Arden plays so much softball. It's a little league. Like, like all stars, and like district championships and things like that. And she'll be done that when she's 12. So I think that's going to be our first chance isn't a couple of years when, when she gets past 12 years old, we should be able to finally go, I think you're gonna have a fantastic time. But from what I've seen, and from what other people have said, it's, you know, it's as magical as the place where they hold it, which I think is at Disney. So are you going to catch a little Disney while you're there?
Rachel Morgan 58:37
No, we're gonna go to Legoland. Nice.
Scott Benner 58:42
Yeah. Excellent. Good for you. Well, I think Henry is, it sounds like he's a lucky little boy because you are perhaps the most well prepared diabetes mom I've ever spoken to. And you've got a motor to that doesn't let you stop. How are you taking care of yourself? Is do you find yourself? Do you find yourself worn out beat up?
Rachel Morgan 59:06
Yeah, it's the sleep. And we've got better sleep obviously when we have the CGM. So my husband and I we are pretty both. We're both well versed in dividing up the care so it's really the sleep issue. And that's probably one of the things that I want to get him back on the CGM for I'm sure I'll still wake up I'm sure I'll still check in. We have the decks for we don't have the deck share but I can only imagine how amazing that would be just to look at my phone and then go back to sleep.
Scott Benner 59:38
If if it did nothing else but cake kept me from having to walk across the house in the middle of the night. It would be great just for that but it is showing itself to be even more especially when you pair it with you know I have it on my iPhone now like I am seeing the benefits of of having it at my fingertips but my gosh overnight just to be able to reach over to your nightstand and not completely wake up or get out of bed is a huge deal. You know, I had somebody, like, not really a friend, but you know, an acquaintance, I showed up at something recently. And this guy looks at me looks at me and just goes, Wow, you look terrible. And I said, Thank you. I'm probably tired. And he goes from what I said, I don't sleep as much as other people. And so and you know, like, last night was a great example. Like I went to bed last night, I was exhausted, I passed out on the sofa. And I woke up to check on Arden and her blood sugar I we had a little out of range time with the CGM, so I wasn't getting a signal for like an hour. And of course, in that hour, she, you know, her blood sugar jumped up. So I now say you wait till it comes back down, because I'm not good at waking up and, and getting up and falling back asleep and getting up again, like once I'm asleep, I'm fairly asleep. So it was two o'clock in the morning, I Bolus what I thought was the safe amount. And then I waited about 45 minutes and saw that I didn't think that was doing it. So then, you know, I got more aggressive with the insulin, but I think I close my eyes again, by about four maybe, like I didn't go up for two hours last night in the middle of the night.
Rachel Morgan 1:01:19
It's more extreme leaving than having a newborn. Yeah.
Scott Benner 1:01:21
And then when I woke up this morning, I felt that um, you know, when you you know, when you've taken nap in the middle of the afternoon, and you wake up at the wrong time from it, and you can't tell what time it is. Or if you're touching the floor and paper on your head, the whole thing. That's how I felt this morning when I woke up. And and then you know, and then I get this guy telling me I look like hell. I'm like, buddy, I know, trust me, you don't have to tell me. But thank you. To this day, I think the most popular blog posts on my blog is just a picture of me looking tired. Which is disheartening for all the hard work I put into some of the writing, but never Nevertheless, I think it's what people really connect with is that idea of just being exhausted, you know? Well, I know that this is great advice that I don't take myself all the time, and that you won't take either. But please try to get some sleep and take care of yourself.
Rachel Morgan 1:02:10
You know, I will say this, my mom is a nurse. And so when she visits, she takes the nights for us and we sleep. So, you know, once every two months, we can sleep through the night.
Scott Benner 1:02:21
That should keep you alive for a good long time. Exactly. Well, Richard, you're really fantastic. And I'm sorry, we're running out of time, because I do feel like we could talk more about other subjects. But I really appreciate you reaching out and and wanting to do this. And would you say that if other people are thinking about reaching out and coming on the podcast? Was it a good experience for you?
Rachel Morgan 1:02:46
Absolutely. I think the more that the folks who live with this, the more we can talk to each other. There's, the easier it is to bear. And the better advice and the better care we can give the people we love.
Scott Benner 1:03:00
I couldn't possibly agree more. Because I've just seen it firsthand so many times, and I'm seeing it already, even though the podcast is like three or four months old. And you should definitely go back and listen to other episodes if you get a chance. But But even in the short amount of time, the reviews and the private emails that I'm getting for people are are just echoing what you just said over and over again. And it makes it it makes it really, it makes it easier to do because it's not something that fits well into my day or into my life. And I know sometimes my wife looks at me like, did you just say I have to go upstairs in the bedroom and be quiet for an hour. So you can talk to a woman from British Saskatchewan and I'm like I did. So hustle upstairs and fold some laundry while you're out there if you would. But it really is. It's the community of people helping each other in myriads of ways is, I think the cornerstone of how people get through this. And I'm just trying to be a small part of of helping that continue on because I don't know it's helped me and I've seen it helped so many other people and I hope it helps you a little bit it already has. I mean, you found that wonderful woman that helps you with the tape allergy and, and everything else. Alright, I am going to hold you to writing a guest piece for for the blog and,
Rachel Morgan 1:04:24
and complete with pictures. I promise they'll be
Scott Benner 1:04:28
there'll be really eerie pictures of Henry's rash which I've seen. And it really is fascinating to see how something starts locally and spreads like that. It's frightening, honestly,
Rachel Morgan 1:04:40
it is. I mean, it was to the point where they were worried about his airway like just a complete anaphylactic shock. Absolutely.
Scott Benner 1:04:47
I was worried about it and you were sending me pictures of something that you had already taken care of. And you know, and when I looked at it, I was like it's it was frightening at first and and like you said it is completely different from just you know, a localized his reaction to something but you know, I would say to you if you helped me earlier in the podcast and you said, you know, we don't clean with alcohol either and you know, I don't too, but it was just nice to hear that somebody else doesn't. Because, you know, excuse me two weeks ago, I think I told the story two weeks ago, Arden was in a softball tournament and her it was a whole weekend tournament. So she was like in a hot tub, but like every night after softball and and coming up on 72 hours, her Omnipod just literally fell off. The adhesive had just had enough and it fell off of her in like the third inning of a game. So I changed Arden's insulin pump on a bench on a dusty field with a bottle of water, five napkins and an insult. So she stood in front of me while I sat on the bench, I just wiped her down with literally bottled water. And I was like, okay, like, let's wait for a second while that dries. And then I slapped another pump on her and and she went right back to playing again. And I know that there are a lot of people who would be horrified by that. But you know, it is something that we found to be necessary. Arden never had anything close to what I saw in Henry's pictures, but she was having reactions that would have would have stopped her from using an insulin pump do I think at some point, so anyway, Rachel, you are fantastic. And thank you so much for doing this. We are running over on time. So I'm gonna say goodbye. And unless there's anything else you want to add, because the last episode I did with, with Mason's mom, Michelle sent me an email like five minutes afterwards. And she's like, I, I really wish I would have mentioned this. And I said, Don't worry, Michelle, I think you mentioned a lot of good stuff. So is there anything else you wish you had? Or is this goodbye?
Rachel Morgan 1:06:50
I just want to say thank you. Keep writing. Keep talking. Oh,
Scott Benner 1:06:54
I didn't mean for me, Rachel. Amen. Amen. For something. Oh, thank you so much. I do genuinely appreciate it. And I appreciate your time here today. Okay, have a great day. Bye bye. Thanks so much for listening to this episode, the Juicebox Podcast don't forget, there's a detailed blog post including pictures and sort of a walk through how to from Rachel this week on Arden's day, talking about her son, Henry, severe at ease of allergy and how they deal with it. You can find me on social media at Ardens de or at Juicebox Podcast, the podcast is at juicebox podcast.com. iTunes, anywhere that podcasts are available. If you're able to go to iTunes and leave a rating or a review or both, I would really appreciate it for the Juicebox Podcast if you're enjoying it, please tell somebody else. And what else there's got to be something else music for the Juicebox Podcast is from Sydney Mueller. And that's pretty much it. I thought this was a really great episode Rachel was really well spoken and articulate. And she was even nice enough to leave a link to her own personal website in case you want to ask her questions about the adhesive allergies. So if you go back to the blog post on artists de.com or go into the show notes from this episode, there'll be links that you can follow to all of that stuff. Alright, that's pretty much it. I will talk to you next week.
