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Episode 64 - A True Balance With T1D Mama Amanda G.
245 Plays1 month ago
Amanda Gentles is on the podcast sharing her beautiful balance of letting her 8yr old son be a kid and also caring about blood sugars. She discusses trying out different technology to find what worked best for her, the mental health aspects of being a type 1 mom, being married to a T1D and so much more!
Raquel is currently in a contracted agreement with Tandem Diabetes.
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T1D Babysitter List: https://stan.store/typeonetogether/p/t1d-babysitter-resource
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Super Parents Community: https://honeyhealth.app.link/28gQmJjyDsG
Facebook Group: https://www.facebook.com/groups/typeonetog
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Transcript
Introduction with Two Amandas
00:00:24
amandacberg
Hi, everyone. Today, I am sitting virtually with two Amanda's, um both mom and type ones. I think you can already guess one of them, of course. um But we have another Amanda here who has a lot of just interesting stories to tell, I think, in her own experience. So I'm really excited as we get into interviewing more type one parents. So welcome to the show.
00:00:49
Amanda
Oh my gosh, thank you so much. I am super excited to be here talking to you too.
00:00:55
amandacberg
yay
00:00:55
amanda
We're so excited to have you and just to get like fresh perspective, it's always great to hear um how other people live with diabetes and their management styles.
00:01:01
amandacberg
yay it really never it's never the same for anyone who's
00:01:07
Amanda
Yeah, absolutely.
00:01:07
amanda
So we're excited.
00:01:10
Amanda
Because it's all very different for every kid because we don't want to make it easy, right?
00:01:19
Amanda
No.
00:01:20
amandacberg
Yeah, it's all different.
00:01:20
Amanda
That's right.
Family History of Diabetes
00:01:22
amandacberg
Can you start just by sharing a little bit about your story and how, why you're here?
00:01:27
Amanda
Yeah, absolutely. um So my son Cooper, um he's seven, he'll be eight in about a month. We um got his diagnosis about two years ago. Actually, almost exactly. we are ah October 1st was his diagnosis. so um My husband, what's interesting about this is my husband Andrew is a type one as well.
00:01:55
Amanda
ah He was diagnosed when he was 13. He's the youngest of three boys. The oldest brother is also a type one.
00:02:03
amanda
Oh wow.
00:02:04
Amanda
he was yeah He was diagnosed when he was three years old. God bless his mother. I mean they you know, it's like peel a stick and you hope you're within a hundred points ah Of having his number I cannot even comprehend How that was for her we unfortunately lost her a few years ago before Cooper was diagnosed So all of those questions I would want to ask now.
00:02:15
amanda
Yeah.
00:02:27
Amanda
I'm not able to which is which is terrible um so funny story Andrew when he moved in with me before we got married and I had a cat who was 12 years old, who I'm not kidding, six months after he moved in, was diagnosed
Diabetic Cat Anecdote
00:02:44
Amanda
a diabetic.
00:02:44
amanda
Oh my gosh.
00:02:45
Amanda
So it's like, it's a little bit contagious in some way, right? I was like, okay.
00:02:49
amanda
you
00:02:50
Amanda
So I have this type one husband given my cat shots twice a day. and you know You can't turn back the clock. I can't tell you what I knew and didn't know about diabetes back then, but it wasn't much. I knew he needed insulin. um He was a grown man. I was certainly not helping him manage his diabetes. I had finger stick ah you know tabs all over the house and juice boxes and whatnot, but that's kind of as much as I knew, and I didn't think much about it, to be honest with you.
00:03:26
Amanda
when we decided to have kids, it never crossed my mind.
00:03:31
amanda
Hmm.
00:03:31
Amanda
It wouldn't have changed my mind at all had I thought about it. I just, if I'm being really honest, I just didn't think about it.
Testing for Diabetes Antibodies
00:03:39
Amanda
um So we had Cooper, as luck would have it, um and this was not planned, but the pediatrician we chose, her ex-husband was a type 1 diabetic and says her daughter.
00:03:50
amanda
Oh my gosh. Oh my gosh.
00:03:52
Amanda
Yes.
00:03:54
Amanda
I try attract them, you guys.
00:03:55
amanda
It really, yeah, you attract them.
00:03:57
Amanda
I attract them. um So when Cooper, I don't know, I'm going to say somewhere between one and two, she told us about the antibody testing.
00:04:09
Amanda
And we were like, okay, I mean, just my personality, if there is information to be had, I would like it.
00:04:17
amanda
who
00:04:18
Amanda
um So this was not even a question of whether or not we were going to get him tested. We did. oh I remember Andrew calling me because the letter came in the mail that he had four of the five antibodies.
00:04:32
Amanda
That was much harder for Andrew to hear than it was for me to hear.
00:04:36
amanda
Hmm. Hmm.
00:04:38
Amanda
um You know, look Andrew is coming from a perspective of he'd had it for so long He knows how hard diabetes is and he also had it for so long and Raquel in a similar situation for you, right? Technology wasn't what it is now when he was growing up. That was much more challenging. It was much more difficult um I do think there was a part of him that felt responsible for it um and You know, for me, it was Andrew made it look easy.
Managing Diabetes vs. Other Illnesses
00:05:12
Amanda
I didn't have to think about it much. I'm like, okay, you eat, you get insulin. Like this seems okay. Um, and it's a problem with the solution. I lost a, my older brother to a stage four brain tumor.
00:05:23
amandacberg
Yeah.
00:05:25
amanda
Hmm.
00:05:27
Amanda
um about 10 years ago. That's a problem without a solution. There wasn't anything we could do.
00:05:31
amanda
Yeah.
00:05:32
Amanda
That was inevitable. This was like, okay, like you want to throw this at us? like We've got this. So we did try, ah the pediatrician also gave put us in touch with the trial net, I think at the time.
00:05:48
Amanda
They had a clinical trial to potentially delay onset.
00:05:53
amandacberg
Mm.
00:05:53
Amanda
We're like, okay, that sounds great. We went in September of 2020. Only one parent could go. My husband went, I think that was traumatic, like you know trying to do a blood draw like that.
00:06:03
Amanda
um And he definitely remembered that. um The doctor told us Sorry like you don't qualify. I don't know what happened that made him qualify were were his numbers elevated Something about it was like this isn't going to work um And told us he would be diabetic within a year Okay,
00:06:24
amanda
Mm.
Monitoring Before Diagnosis
00:06:26
Amanda
so
00:06:27
Amanda
We did with that information, we found an endocrinologist ah just to have one, and we started going once a year. We're just going to do regular A1C checks.
00:06:38
Amanda
We're going to get ahead of this. So we did. First year's fine. Second year, we're a little bit elevated. And then she's like, why don't you come back in six months? We did.
00:06:49
Amanda
And at that point, I remember she walked out of the room. The number popped up on the screen. He was 7.4, and Andrew's like, this is it.
00:06:55
amanda
Yeah, mm hmm.
00:06:57
Amanda
I was like, oh crap, really? Like we're going to have to like maybe do some long acting, you know, Lantis once a day. Oh God, how are we going to do this? And this is on a Monday. She gave us a prescription for a Libre and she's like, get this on him. Let's just monitor it for two weeks and see what happens. Um, I mean, I know you will understand this. Uh, this is a, he's five at the time.
00:07:23
Amanda
This kid is, and I mean terrified of needles. It took so much bribing.
00:07:32
amanda
Yeah.
00:07:32
Amanda
I do remember at one point chasing him around the backyard. We didn't get it on him until Friday. He was so proud of himself when we finally got it on. And you know we're watching it.
00:07:44
Amanda
By Saturday morning, I was like, Andrew, this thing hasn't gone below 300 since we put it on He's like, it's time to call the doctor.
00:07:48
amanda
Oh my gosh.
00:07:53
Amanda
And I was like, okay. And we called. They said, see you in the ER.
Hospital Learning Experience
00:07:58
Amanda
And you know about an hour, ah we were I was like, okay, this is this is it.
00:08:04
Amanda
And You know, that's certainly jarring, but I have to say in the, and i type ones will understand this, in the world of diagnosis stories, that's about as picture perfect as you can get. You know, we knew what was coming. I had a little bit of knowledge, not a lot, but I, so you know, I had a model. Here's my husband. He's a grown man.
00:08:30
Amanda
He's running Ironman. He's super successful. He's very healthy. So I didn't have that fear of like, Oh my God, what, what is the thing my kids not going to be able to do?
00:08:41
amanda
Yeah.
00:08:41
Amanda
Cause I knew we could do anything. I was like, okay, this is something for us to learn, but he can do this. So I think I was able to skip maybe a stage or two of that, of that grief.
00:08:52
Amanda
Um, and so, i'm um, I'm very thankful for that.
00:08:52
amanda
yeah
00:08:57
Amanda
And those two days in the hospital,
00:08:59
amanda
Mm
00:09:00
Amanda
that's a different level of trauma. you know not Not because they did anything wrong, but again, your you know your kid looks up at you and is like, I have to get a shot.
00:09:03
amanda
-hmm.
00:09:13
Amanda
No, you got to get five or six a day. And we're holding him down.
00:09:16
amanda
Yeah.
00:09:17
Amanda
And you know it's just... You're taking in, God bless the people who have to teach it. You're taking in so much information in less than 48 hours to go home and do this. And I'm so grateful for the people who do that. But what I will say is, they teach you the science. And I'm very like logically brain cells like, okay, you have just given me the information. If I do A plus B, I am gonna get C, I got this.
00:09:50
Amanda
What would have been helpful to even know is we have given you part of the equation. We've given you the science. The art buckle up because that's where it gets hard.
00:10:03
amandacberg
Yep.
Art of Diabetes Management
00:10:05
Amanda
And what affects Andrew's blood sugar does not affect Cooper's blood sugar.
00:10:05
amanda
Yeah.
00:10:09
Amanda
And it's, you know, it's every day. It's every kid. It's every meal. It's all so, so different. And I know they can't teach you that. but God almighty, I would have liked to have been prepared that you are gonna think you are doing everything right and it's still gonna fail.
00:10:20
amanda
It could warn ya.
00:10:32
Amanda
and And that would have been good, ah been good to know. So look, that that first week at home was was really hard. I'm not proud of all of my parenting moments ah that first week and trying to get him to do the shots, but I do remember distinctly like,
00:10:49
Amanda
That following weekend, we went out to lunch with some friends. We did his dose at the table. He was fine. The other kids wanted to go have ice cream. So I was like, okay, bud, you can have this little kid scoop because it's under what what we need to dose for.
00:11:04
Amanda
And that kid looks at me, pulls up his arm sleeve and says, give me the shot. And I was like, okay, so we're done being afraid of this. That's great. Ice cream has just tipped us over.
00:11:13
amandacberg
Wow.
00:11:13
amanda
Wooshoo!
00:11:16
Amanda
I can handle this. Okay. Um, so he got, you know, he got, he got used to that relatively quickly.
Communicating Needs at School
00:11:25
Amanda
Um, And then you know we kept him out of school for four days ah to kind of get him used to the shots before we sent him back. And then you know you're responsible
00:11:41
Amanda
in an hour to go into the school and say, here's your diabetic kid, and here's what we're going to do.
00:11:44
amanda
Mmhmm.
00:11:48
Amanda
um I want to say ahead of time, because I'm sure everyone listening has heard Amanda's story. And so I want to recognize like the privilege of our situation.
00:12:00
Amanda
And it should not be uncommon.
00:12:04
amanda
Yeah.
00:12:04
Amanda
ah it should It should be the standard. but um
Healthcare Support Privilege
00:12:09
Amanda
Yeah, I just want to right recognize that it is different.
00:12:09
amanda
I appreciate. I so appreciate is saying that.
00:12:13
Amanda
Yeah.
00:12:14
amanda
But, like, I don't want any families who are receiving the care that they should be receiving at school to feel guilty for getting what they should be getting.
00:12:25
Amanda
yeah Yeah, you're absolutely right.
00:12:27
amanda
And so I hope that You know, yeah, I hope that no one ever, and any of you who are listening, who have really amazing policies in place in your district and the school works beautifully with you and it's a team effort, like I am genuinely so happy for all of you.
00:12:44
amanda
There's literally not one part of me that has ah and an ounce of jealousy, like there really isn't.
00:12:44
Amanda
Yeah.
00:12:50
Amanda
you Yeah, of course.
00:12:51
amanda
So I appreciate you saying so, but I'm just happy for you that that's the case for you guys.
00:12:55
Amanda
I just i know that you know for you and others, I just feel it's important to recognize the privilege that comes with our situation.
00:13:01
amanda
Yeah, thank you.
00:13:04
Amanda
And you know we are at a small private school that just happens to be down the street. um So we have a dedicated nurse. We didn't even, you know, I think they have documentation from our doctors in terms of like a 504 plan. We have not needed it. um We've got a ah group text chain with the teachers and the nurse and myself, and we just manage this oh as it comes. Like I meet with each teacher at the beginning of the school year and try to do for them what
00:13:42
Amanda
that stay in the hospital didn't do for me, which is to say, here's a lot of information we're going to take in in an hour. And I've created a manual for them to like go back and reference. then But then what I think is really important to say is, we have a lot of technology on this kid.
Team Approach in School
00:13:57
Amanda
There are 10 people watching him at almost any given time, and I don't know all the answers. like Some days he's going to be high, and I don't know.
00:14:04
amanda
Mm hmm.
00:14:06
Amanda
We're going to make some you you know very educated guesses on how to do that, but I am your safety net and is I don't want to diminish this experience for anyone and how scary this disease can be.
00:14:21
Amanda
But I will say to them, you are not going to kill him. I promise. We've got a lot of safety nets here. Like, you're not going to kill him. And I need you to sort of release some of that fear because it may keep you from doing the thing I need you to do in that moment, which is to let him be a kid.
00:14:37
amanda
Mm hmm.
00:14:39
Amanda
And so much of this is, you know, a little bit of winging it, a little bit of educated guess. He's seven. He can tell you some stuff, but I need us to be a team in this.
00:14:51
Amanda
And if we're following this like you know but so stringently, were we're going to drive all of ourselves a little bit crazy.
00:14:59
amanda
Yeah.
00:15:00
Amanda
And if we can keep to do if we can do that, right and if we can intervene at the right time, and we can do these little small course corrections throughout the day, I said to the teacher this year, I was like, we're playing a video game.
00:15:12
Amanda
We're going to bump and nudge these numbers until we kind of get them where we want. I find that that's going to allow them to do what they're there to do, which is teach and not get us, any of us into a scary situation or an annoying one with just alarms going off all the time, you know?
00:15:21
amanda
Yeah.
00:15:30
amanda
Yeah.
00:15:30
amandacberg
I think that's so powerful. You brought that up in one of our one-on-one sessions, and I'm so glad you said it here because, like, that is the fear. No one says it, but everyone's scared they're gonna kill the child, right?
00:15:41
Amanda
Kill him. Yeah.
00:15:42
amandacberg
Because babies can be so scary. And to just put out there so matter-of-fact, I think that's so powerful and something that we can all take away, like,
00:15:44
Amanda
Yes.
00:15:51
amandacberg
just say it like if you're in the situation where there really are so many eyes on the kid like you're gonna be fine you know and things might go wrong but i just love your approach to all of this because you understand how hard it is but you also you're just matter of fact about it and you're like it's fine we got this you're not super emotional about it and maybe it is because you saw your husband thriving with it but
00:15:52
Amanda
Yep.
00:16:11
Amanda
Yeah.
00:16:12
amandacberg
It's just such a good balance that I can like feel from you. You allow him to be a kid, and I know from working with you that you really care about his blood sugars, and you want him to feel good, and that's the exact balance you have to create.
00:16:21
Amanda
i do
00:16:23
amanda
Yeah.
00:16:24
Amanda
yeah
00:16:25
amanda
Yeah.
00:16:25
Amanda
yeah i just you see that sense of fear whether it's in some of my families or um
00:16:32
amanda
Let's.
00:16:32
Amanda
and listening into some of your other classes. And you don't want that fear for anybody to keep them from interacting with your kid or spending time with them or letting them run and do all of the crazy
00:16:41
amanda
Mm hmm.
Reducing Fear in Caregivers
00:16:49
Amanda
things.
00:16:49
Amanda
And I was like, if there's a time where I don't answer, I may not give him a full juice box in this situation, and while I don't want that to be a course of action every time he goes low, if I'm not answering, give him the juice box.
00:17:04
Amanda
Let him go to 250. You know what I mean? If you're afraid, then like I'd rather him run a little high in that moment than make you feel scared of interacting with him, because I think that's what he's going to feel, and that's what he's going to take away from that interaction.
00:17:07
amanda
Yeah, it's so that's so powerful.
00:17:24
amanda
And a topic of conversation that we've touched on before, but haven't really like fully dove into ever. And it is this very strange balance of having to acknowledge with the people who are going to interact with your child that like
00:17:33
Amanda
Mm-hmm.
00:17:38
Amanda
Mm-hmm.
00:17:41
amanda
Yes, it's a disease that is life threatening. Yes, things can go wrong in 10 minutes, but we have like so much at our fingertips to prevent it from happening.
00:17:49
Amanda
Yeah.
00:17:53
Amanda
yeah
00:17:55
amanda
So if you just utilize the technology and you you know like I think, I mean, for some people in our lives, I think the fear is like, what if I just like accidentally forget my phone and then something happens? And it's like,
00:18:15
amanda
Well, let's get around that. Wear something around your waist with your phone in it.
00:18:20
Amanda
That's right.
00:18:21
amanda
And before we leave, the phone is on, volume is up, and you have the phone on your person the entire time you're with the child. Well, then guess what?
00:18:31
amanda
That fear goes away. And then the alarm is going to go off.
00:18:34
Amanda
Yeah.
00:18:35
amanda
So the fear of like, oh, they pass out in 10 minutes goes away because you're going to catch it.
00:18:41
amanda
um And I think it's just kind of peeling back all the layers, getting to the root of like what specifically is causing the fear and then, you know, creating actionable items.
00:18:41
Amanda
Yeah.
00:18:50
Amanda
Yeah.
00:18:54
amanda
But it's hard to do that.
00:18:54
Amanda
It is.
00:18:55
amanda
It's an emotional disease process.
00:18:58
Amanda
Yeah, and i've and I've had this conversation with my family because they're like, well, i don't what happens when you know his blood sugar is here, but he wants to eat? And I was like, I know you want me to tell you that there's always an answer. If this happens, do this.
00:19:17
amanda
Mm-hmm.
00:19:17
Amanda
And there isn't.
00:19:18
amanda
Mm-hmm.
00:19:18
Amanda
So I need you to know, I say to them all the time, here we go. um and I'm gonna take my best guess in this situation. And I kind of walk them through my thought process. One, because I need them to know, yes, so I am his mom.
00:19:32
Amanda
Right now I am his full-time pancreas. And I will take on that job as long as he'll let me. um But I am some days making this up as I go.
00:19:42
amanda
Yeah.
00:19:42
Amanda
We all are. And that's, there's some freedom in that too. You can't, it's hard it's it's hard to do it um really wrong.
00:19:49
amandacberg
Yeah.
00:19:49
amanda
Yeah.
00:19:53
Amanda
And when I'm in those situations where he's going away to a new camp or we're doing something else, I remember like my in-laws sent Andrew to France for a year as a teenager to do a study abroad.
00:20:12
Amanda
He didn't even have a Dexcom.
00:20:14
amandacberg
you
00:20:14
amanda
Wow.
00:20:16
Amanda
Now that is probably not a decision I'm going to make. And, but I respect the fact that they did it and I'm like, okay, you went over there and I know you drank and I know you did all the things and you're still here.
00:20:29
Amanda
So I'm honestly, I am more fearful of, you know, my husband and my son doing a road trip to their golf course in South Carolina and being on the highway in a car.
00:20:30
amanda
Yeah.
00:20:43
Amanda
Then I am worried about him dying of a low blood sugar.
00:20:49
amanda
Yeah.
00:20:50
Amanda
Anything can happen, but that's, that is genuinely how I feel about it.
00:20:57
amandacberg
I can agree with that personally. I feel like I have so much health anxiety lately and it's not about diabetes funny enough.
Switching Management Technologies
00:21:02
amandacberg
Like you do over time, you kind of grasp it and understand that you can take care of it.
00:21:02
Amanda
Yeah.
00:21:07
amandacberg
Hopefully enough, or that you at least can let go of the things that you can't really control. So yeah.
00:21:13
Amanda
Yeah.
00:21:14
amandacberg
Okay. Can you share a little bit about your technology journey? Cause I know you've been trying different things and switching things up.
00:21:20
Amanda
Yeah.
00:21:20
amandacberg
yeah
00:21:21
Amanda
Yeah. so what i will So when we got diagnosed, obviously he was MDI for a while.
00:21:28
amanda
Yup.
00:21:29
Amanda
um We pushed for a pump. you know I think they typically want you to wait the full six months. And I'm like, I've got a pantry full of pump supplies. we've We get it. like This just feels unnecessary torture to a child when the technology exists to do a pump.
00:21:45
Amanda
So We um moved to one I think four months later and we started with on the pod five. We didn't get a lot of information on our choices. Not that I don't think I would have made a different decision at the time. My husband had been on a T-Slim forever. He was tubed. I'm looking at a five-year-old going tubeless just seemed to make the most sense and Yeah, I didn't do much research beyond that.
00:22:17
Amanda
And that first year or so was great. I mean, we we got it to a place where we were in range you know more than the threshold of where they would ask you to be in range.
00:22:32
amanda
Mm-hmm.
00:22:33
Amanda
Our numbers were pretty good. And so what I will go back and say is this you know approach I have that seems kind of lays off air of you know we're not going to kill him.
00:22:45
Amanda
But then talk to me about his numbers and I get a little type A crazy about it. um You know, that's where I feel like I can be impactful to him. If I can take away this variability for you and have you feel better, I'm gonna try. I also feel this pressure of if I can learn this now, I'm gonna be able to hand it over for you and I will have taken all these, you know,
00:23:11
Amanda
all this crazy learning journey you know and the punches that come away. If I can take those now, then I feel like I can kind of save him from that, which is probably not realistic. But um when you're looking at a seven-year-old, it gives you a little bit of ah hope and and something to hold onto in that way.
Challenges at School
00:23:28
amanda
That's exactly how I feel.
00:23:28
Amanda
So, yeah, I mean, yeah, I'll i'll take the body blows now if I can save him from a few a few later.
00:23:30
amanda
Yeah, we're totally on the same page.
00:23:35
amanda
yeah
00:23:37
Amanda
So,
00:23:41
Amanda
At the end of last school year, I started to feel like we're doing great. I feel like I'm working really hard um to keep to keep him in range, especially with highs. Lows weren't as much of an issue, but I'm working really, really hard on ah you know combating those highs and we're constantly doing corrections.
00:24:08
Amanda
I'm holding back on asking the nurse or teacher to give a lot of corrections because you know I don't want to be that parent while they're at school. I never want to take advantage of what I feel is the gift of a partnership they've given me. So we would do it sometimes, but sometimes I'm like, okay, we're just going to let him ride a little high and I'll deal with this when he got home.
00:24:31
Amanda
And like I said, Andrew had been on tandem and I started reading about, you know, I knew that algorithm, TSLIM didn't feel like the right choice for him. But then I started reading about Moby and I was like, okay, I know it's tubed, but it seems, you know, a little bit of the best of both worlds. I'm super, super interested in this algorithm and specifically around Basil rates, cover he grew three inches in the last year. His growth spurts are crazy. um you know Sometimes his insulin needs, like, I cannot throw enough in the kid. Sometimes they're dialed back. And with the Omnipod, I was like, you know it takes a little bit to learn that that new total daily insulin to adjust the basil.
00:25:20
Amanda
So I was starting to feel like the pod we were on now is addressing a problem I had two pods ago, and it's not the same. And I wanted more, I mean, I told you I'm a little bit of a control freak. So I wanted a few more levers to pull. And I liked this idea of being able to manipulate the basal rate, being able to create new profiles for him.
00:25:47
Amanda
And so all of this kind of happened over over the summer. And you know if I'm being really honest, that is probably in the course of his journey, the lowest my mental health got as his mom and and caregiver for that.
00:26:03
amanda
Hmm.
00:26:06
Amanda
We got him on the Moby. And I was so excited, trying to convince him to go to new technology, not because he was, the needles are the same. It's not that much different, but like, man, does this kid not like change.
00:26:18
Amanda
So we, it was a lot of incentivizing him ah to go to it.
00:26:18
amanda
Yeah.
00:26:24
Amanda
And he finally agreed. And those first two weeks were garbage. I mean, they were garbage. Here's the thing. If you were on Omnipod, basal rates seem great, but I've never had to do one.
00:26:36
amanda
Yeah.
00:26:37
Amanda
it It did it for me. We never set basal rates. And then I'm doing all of this research and, you you know, basal rate testing. I'm like, you want me to try to get this kid in the middle of camp to not eat for four or five hours? I was like, this feels just untenable to me. um I mean, I remember just sitting on my couch just, and I don't cry about diabetes really ever, just sobbing, thinking I'm failing him. Why can't I get this?
00:27:07
Amanda
i I know people love it. I know I can. Why can I not get this for him?" And then you know sort of at the same time, um he had this summer camp they for the last two weeks of summer and they called and they were like, so our nurse backed out.
00:27:27
Amanda
And I was like, so what you're telling me is you don't want him to come. And she's like, kind of.
00:27:32
amanda
Oh my gosh.
00:27:32
Amanda
And I was like, okay. So i had so we stopped. I told Andrew and I sat down Cooper to tell him about it. And this kid doesn't cry about diabetes.
00:27:44
Amanda
He'll sometimes say, this sucks. Why do I have it? I wish I didn't. same Z's bud. I wish you didn't either, but this is what we're dealing with and we got it." But he sat there and he's like, why? And he's like, he had this last week of camp in his head because he was going to be there with his best friend and he had been looking forward to it. And he sat there and cried and he goes, why can't I do this? And I was like,
00:28:10
Amanda
hold my beer, you're going to go to that camp. like We will figure this out." And I called the woman back and I said, ah I know you weren't expecting a negotiation, but I'll horse trade with you here and I'll take him out that that first week because I know you guys are busier and i I've got a backup plan for you.
00:28:15
amanda
If.
00:28:29
Amanda
But I know that last week of summer, a lot of the schools have gone back. and you're not going to have to deal with as many kids. I was like, all I need is somebody with a cell phone who is willing to text me. That's all I need because I'm watching him. You can watch him. I'll tell you what to dose him. I was like, I promise I will change his pump to let him ride a little higher. You won't have anything to worry about. And then I was like, well crap, now I actually have to make good on that promise and um you know looking online and I had followed all of you before.
00:28:59
amanda
ugh
00:29:06
Amanda
I had started with Meg ah in the very beginning because she was on Omnipod and so I felt like I learned a lot through that. And doing the search and I reached out on your website trying to do a one-on-one session.
00:29:22
Amanda
And Raquel had emailed me back and she's like, oh, this you know diabetes educator isn't available. Can I talk to you? I was like, oh, you can talk to me.
00:29:30
amanda
Yeah.
00:29:30
Amanda
This is awesome. Yes, let's do this. And we sat there and worked through what those you know what those profiles should be, how to change his basal rates.
00:29:42
Amanda
um I did the master class on tandem, which was so helpful because that first day of camp, I promised her she wasn't going to have a lot to work to do. That kid was low all day.
00:29:54
Amanda
They were chasing him with gummies.
00:29:54
amanda
yeah
00:29:55
Amanda
and I was like, what is happening? and I realized when they would give him a gummy and he'd go up, The Moby was giving that correction. And so I was dosing lunch based on one thing, not knowing that insulin was in there.
00:30:11
Amanda
And so then we went in and I was able to just change that correction factor for, you know, so it was giving almost no insulin and and lower all those basal rates for him.
00:30:19
amanda
Mmhmm.
00:30:21
Amanda
So this summer, this what this particular camp, it was all outside. It was swimming. It's 90 degrees in Atlanta. on a good day, you know, at that time of year. And he sat at like 120.
00:30:35
amanda
Nice.
00:30:36
Amanda
Um, so I don't, I'm not sure Raquel knew what she was getting into.
00:30:36
amanda
Wow.
00:30:39
Amanda
So I was like, this call is great. I have a lot of more questions. Like how can we make this, uh, you know, we'll check in every couple of weeks.
00:30:42
amanda
Hehehe.
00:30:46
Amanda
So as his body changes, like you're not necessarily, I don't think I was saying, Hey, Raquel, tell me exactly what to do.
Tips and Strategies for Management
00:30:55
Amanda
It was, let me give you, here's where I think we're going.
00:31:01
Amanda
Help me learn what to look for. So I know. Which of these numbers is a correction factor? Is it carb ratio or is it basal? Which one am I dialing up and dialing back at that time? And it has been, look, we still have highs, we still have lows. it's It's not a magic wand, but I will say it's been a real game changer for us. In terms of, I really notice it now once he's back at school,
00:31:34
Amanda
it will stay stable. you know I don't have to worry about it going high and and either having them give a correction or me having to deal with that at the end of the school day and get them back down.
00:31:46
amandacberg
Yeah, ah it was so great working with you. And I mean, I didn't really offer that. It was just kind of a one off thing. I am thinking about doing that more. If anyone's interested, let me know. But I i have to say I'm in a contracted agreement with tandem diabetes.
00:31:58
amandacberg
But like we even recently posted a story a parent was asking us to ask the community like how it's going on Moby for their kids bing and
00:32:06
Amanda
Mm hmm.
00:32:08
amandacberg
and we posted the responses, and someone replied being like, wait, why is this better and um than Omnipod?
00:32:11
Amanda
Mm hmm.
00:32:12
amandacberg
And I replied, and I was like, it's not. There is not one size fits all for diabetes, and both Amanda and I really believe that. So I want to make that super clear. I also know that I'm not the best at sharing Control IQ, Moby, T-Slim tips on Instagram like Amanda is with Omnipod.
00:32:27
amandacberg
So I'd love to take a couple of minutes if you have any specifics that you'd like to share that were really helpful that we went through so we can kind of give some tangible tips. um I know even with like different site locations, I'd love to hear what happened with that because that was super interesting.
00:32:44
amandacberg
Yeah.
00:32:44
Amanda
Yeah, it was so we had some trouble in the beginning with the auto soft and not
00:32:53
Amanda
with the site itself, but I just felt like I wasn't getting it to last um more than about 48 hours. So for that, i I did watch a lot of videos. like That is specific on exactly how you need to put it in and hold the skin and pull it out to make sure you aren't bending that cannula. And things have gotten better with that. But you and I, Raquel, talked a lot about true steel.
00:33:19
Amanda
And when I brought that up to my son, he's like, excuse me, you are talking, you want to put a needle in me with a metal cannula and then you want to leave it in my skin?
00:33:31
Amanda
I mean, if this couldt kid could have, he would have given me the middle finger, I promise. He's like, yeah, that is just not happening. So again, like most things, like we have to talk about it a lot. He has a lot of questions, which I love about him. He wants to know how it works. he will not turn I will not watch them give me my flu shot or draw blood, and as scared as he is, he wants to see it. He wants them to tell he will make that nurse tell him everything.
00:33:58
Amanda
So as more comfortable he gets, um you know, with information, he let me do it. And now he's like, wait, you want to do something other than true steel? I was like, Oh God, okay, well, we're going to do both.
00:34:10
Amanda
So let's just buckle up. um So the true steel for us, which comes with a longer tube. And I was a little bit worried about that.
00:34:18
amandacberg
Mm hmm.
00:34:21
Amanda
He does not, he does not care. I will ah acknowledge here that could be um a gender thing. Like I'm not putting him in a dress. So we don't have as many things to worry about in terms of like clothing options for him. um So it does work. He usually we do um true still sites, you know, sort of at the top of his butt. And then we do the auto soft on his stomach.
00:34:50
Amanda
And one of the most interesting things, and I think you and I came to this at the same time in our last conversation, Raquel, was I never had a site on Omnipod where I was like, oh, the absorption is so much different. And the insulin needs are totally different if I use his butt rather than his stomach. And for whatever reason with Moby, his insulin needs are so much less on his stomach.
00:35:18
Amanda
So I've got the carb ratios all turned back, ah the basal dialed back a little bit on on those.
00:35:19
amanda
yeah
00:35:25
Amanda
And so again, it was the beauty of tandem. I have a profile for his stomach and I have a profile for other sites and I can just flip back and forth depending on where we put the site.
00:35:36
Amanda
And he's gotten really great about those site changes and it doesn't bother him at all. So I think, you know, talking about, you and I talked a lot about his morning and how important that breakfast dose was, like to start him at a good number before we dose breakfast and how that was going to set him up for the day. So I think your suggestion was we were going to go at 4am and start dialing up his basil to combat some of that dawn phenomenon. And you know,
00:36:13
Amanda
then we take it way down at around 2 a.m., because if he's gonna go low, that's when it's gonna happen. So it was really about pinpointing not only when he needed more basal, but when we needed to make the change in the profile in order for that to have the intended impact that we wanted it to, right?
00:36:31
amanda
and her
00:36:32
amandacberg
um before Yeah.
00:36:32
Amanda
um Yeah. um And so I've had to make changes since then, Of course, but I'm not afraid of making those. And I think you know just in the the few brief conversations we have, I feel super empowered to do that.
00:36:50
amandacberg
Yeah.
00:36:50
amanda
Can I ask because I don't understand um Control-IQ like at all because I've never done it.
00:36:58
Amanda
Yeah.
00:36:58
amanda
um So when you're talking about Bazel's, does Control-IQ not auto adjust your Bazel's at all? Like the user is 100% in control of deciding the Bazel rate.
00:37:15
Amanda
No, it'll dial it up and and and down. And so if it is predicting the same as Omnipod, if it's predicting you're gonna go below 70, it's gonna shut your basil off.
00:37:28
amanda
okay
00:37:28
Amanda
And if you're going high, it's going to turn it up a little bit. It's also, if it's an hour after you've done a bolus dose, it'll give you a correction as well.
00:37:39
amanda
ah
00:37:39
Amanda
So it will, however, it's going to make those adjustments based on what you have. And like so for us, we have five or six different basal rates for a day.
00:37:53
amanda
Okay.
00:37:56
amanda
okay
00:37:56
Amanda
you know, depending on what time of day.
00:37:58
Amanda
So it's gonna make those adjustments based off of that.
00:38:01
amanda
Right. And you have a profile for when you're using his stomach and those have five or six different basal rates.
00:38:06
Amanda
Yes.
00:38:10
Amanda
yeah Yep.
00:38:10
amanda
And then a profile for when you're using his upper butt, those have different basal rates five or six times.
00:38:13
Amanda
Yep.
00:38:16
Amanda
Yeah, I have the same time and it's the same like foundation.
00:38:16
amanda
to Okay. Got got it.
00:38:22
Amanda
I just knew to take the stomach down by about 10% on the basal. So I'm not totally coming up with it from scratch. I'm just like you know making little tweaks based on what that is.
00:38:34
amanda
So let's say the basal rate for the hours of noon one and two is, I i don't know point, what's the standard basal rate 0.8 an hour?
00:38:41
Amanda
Mm-hmm.
00:38:47
Amanda
for He's like, let's say like 0.2 or 3. Yeah, he's small.
00:38:51
amanda
Okay. Okay. So let's call it 0.3 an hour. So the algorithm says, okay, 0.3 is our baseline and then we'll increase or decrease from 0.3.
00:38:55
Amanda
and
00:39:06
amanda
That's what it's doing.
00:39:07
Amanda
Correct.
00:39:07
amanda
Okay. Okay. Interesting.
00:39:10
Amanda
Yeah.
00:39:10
amanda
Cool. Thanks.
00:39:12
amandacberg
Are there any other profiles right now, or is it just the site ones?
00:39:12
Amanda
Yeah.
00:39:16
Amanda
It's just the site ones. I did have a profile created for that last week of summer camp.
00:39:23
amandacberg
and Yeah, that was a hard weekend.
00:39:24
Amanda
And and that one was just, you know, I mean, I took everything down by like 30 or 40%. So that's that's its own special ah special one.
00:39:30
amanda
Yeah.
00:39:35
Amanda
But I have also found
00:39:40
Amanda
With Omnipod, we used exercise mode a lot or activity mode, and I haven't really used that. um with Moby at all. I find like his, his schedule is decently consistent. And if I go into, if he goes into an activity or a situation and our blood sugar is already pretty stable, then a little piece of granola or, you know, eight grams of carbs or whatever that is, is going to hold him over better because as, as much as they wanted to be helpful, like I would sometimes get texts
00:40:16
Amanda
you know, he's running out to recess and they're like, should we turn on activity mode? And I'm like, yeah, we should have done that an hour ago for it to really affect it. So I find like, hey, throw a piece of granolatum on his way out is easier and just tends to work better. It takes out a lot of the guessing for all of us in that situation. So I just haven't had to use it and that's a little bit freeing.
00:40:40
amanda
Yeah, yeah, it is interesting how I feel like it's all very personality based. So Amanda, you and I definitely seem to be a lot more like aligned in terms of how we approach diabetes, because for me throwing a little bit of food or juice at
00:40:52
Amanda
Yeah.
00:41:00
amanda
your kid when they're about to exercise or when you notice a drop is so much easier than like whatever it is but there's just something mentally taxing about having to remember to pick up your pod or pick up your phone and do adjustments or like give extra of anything or whatever you know like like and and maybe it's because kids love the eating and love snacking and love so it doesn't feel as overwhelming Yeah.
00:41:22
Amanda
Yeah.
00:41:28
Amanda
And they love activity. Like this is not Andrew or Raquel saying, oh, I know I have a cycling class at one o'clock today, so I can turn on activity mode at noon.
00:41:39
Amanda
I mean, their bursts of energy and activity just, it doesn't stop.
00:41:46
amanda
Yeah.
00:41:47
Amanda
So there's no like, You know, oh, we're going to wait three hours and then we'll do activity. That's great when it happens. And i right now, the way his schedule works is we have breakfast you know before he goes to school, and then three hours later he has recess, so I don't have to do anything.
00:42:05
Amanda
It's beautiful, but I don't get to dictate the school schedule.
00:42:06
amanda
Yeah.
00:42:08
Amanda
So PE is absolutely right after lunch, and there we've got to throw there we've got to throw a little something at it.
00:42:09
amanda
Yep.
00:42:15
Amanda
and yes it It just doesn't bother him. um Dinner time, you know all those kids have their witching hour. So that's that's the time.
00:42:27
Amanda
i i I hate it for all of us because he wants to jump and um i mean I usually spend an hour saying, please stop jumping on the couch. Please stop chasing the dog around.
00:42:36
amanda
Yup.
00:42:37
Amanda
Please stop throwing that ball.
00:42:38
amanda
Yup.
00:42:38
Amanda
Please stop. Please stop. Please stop. Just sit here and watch a show.
00:42:40
amanda
Yup.
00:42:45
amanda
Last night she started dropping out of, she was so flat, so flat at 130. She had, we made Crunchwrap Supremes, like homemade Crunchwrap Supremes.
00:42:53
Amanda
Oh.
00:42:54
amanda
She had a whole one of those, which she never does. She had two scoops of sherbet ice cream and she was 130 flat, flat, flat. And then they were driving me crazy.
00:43:05
amanda
So when my husband was done with work, I was like, I'm out. I'll see you in two hours once you're done putting them to bed. Like I'm toast for today. And they just, it's ah hard because all they want to do is play with him.
00:43:18
amanda
So they're sprinting up and down and suddenly the next number is 110.
00:43:20
Amanda
Yep.
00:43:23
amanda
And then it's like 78. And I'm like, I opened the door. I'm like, are you seeing that? He's like, yeah, it came out of nowhere, which it does.
00:43:28
Amanda
Yeah.
00:43:31
amanda
But yeah.
00:43:31
Amanda
Yeah. And it's never just 78.
00:43:32
amanda
Yeah.
00:43:33
Amanda
It's 78 double arrows down.
00:43:35
amanda
Yeah, exactly.
00:43:36
Amanda
Like we're, we're past the point of no return here.
00:43:41
amanda
Yes, yeah, but I totally feel that.
00:43:43
Amanda
And that, and that
00:43:44
amanda
just the Can you please just sit and start moving?
00:43:48
Amanda
Yeah, I think um one of our biggest wins, and I'm going to give you all the credit here, Amanda, because I listened to one of your podcasts and you were talking about bowl listening for pizza.
00:44:00
Amanda
And it was so specific. And I was like, oh yeah, let's go try this. He never went over 138.
00:44:06
amanda
oh Yay.
00:44:08
Amanda
And I'm telling you, I've wrapped, I mean, I'm sure this is true for a lot of parents. I wrap too much in his numbers of myself.
00:44:19
Amanda
like If I nail something, um it feels like I'm Superman.
00:44:20
amanda
Yeah.
00:44:24
amanda
Yeah, exactly.
00:44:25
Amanda
and then if and then if And then if it's wrong, you're like, well, I'm just the worst mom in the whole world and I can't figure anything out.
00:44:29
amanda
Yes.
00:44:31
Amanda
And it's like, no, this is just diabetes.
00:44:32
amanda
Okay.
00:44:34
Amanda
And the second you think you have it figured out, it is going to smack you right in the face.
00:44:40
amanda
Yes, that's absolutely true.
00:44:41
amandacberg
Yeah, I had a friend actually call me last night and type one friend, we don't even talk a lot about diabetes, but she was like, I just need to vent to you for a minute about type one. And she was just saying how numbers have been super crazy.
00:44:53
amandacberg
She's had a big life change and all this stuff. And she was like, I'm trying to give myself grace, but like, it just feels so impossible. And I kind of had this moment where I realized like,
00:44:59
Amanda
Yeah.
00:45:01
amandacberg
we can say to ourselves all day long, be kind to yourself. like It's okay, you're going through a lot. And I imagine this is the same as a parent, but at the end of the day, in the back of your mind, giving yourself grace and then letting your blood sugars be super high and being kind to yourself for that, like you still feel the guilt or the worry that, oh, this is gonna hurt me in the long term.
00:45:20
amandacberg
And it's like, how can you really be so kind to yourself in that moment when like you still have that fear at the same time? like It's so hard for both of those things to coexist.
00:45:29
Amanda
Yeah.
00:45:29
amandacberg
And I'm curious, like from both of your perspectives how that feels because we feel a lot of guilt personally with that. And it's like, you can't really be next to yourself.
00:45:37
Amanda
Yeah.
Emotional Balance in Management
00:45:38
Amanda
Well, I think one of the things that makes you two and type one together specifically unique is the way you talk about it, which isn't to talk about it as if it's easy or if you do this, you're going to always get it right.
00:45:38
amandacberg
I don't know.
00:45:55
Amanda
And oh gosh, I've seen a number going up to 130. Like I'm so, I better like just you know hit it with a bunch of insulin and get it down. You're very honest about what this really looks like in the moment. and like Some days are good and some days are bad. I think it is, to your point, it's a little bit unrealistic when you see that blood sugar of 250 or 300 to be like, I'm just going to give myself all this grace and it's not going to matter. No, I think it's okay to feel frustration in the moment.
00:46:27
Amanda
But then two hours later when it's back, perspective is everything, right? Like we can always see things a little bit more clearly and to know and be able to say, well, that was a bad day or that was a bad meal.
00:46:40
Amanda
And I'm going to try to do that a little bit better next time. It doesn't mean I failed everything.
00:46:46
amandacberg
Yeah.
00:46:47
amanda
Yeah.
00:46:47
Amanda
And so I love the way you guys talk about that. um I think it's so, so helpful.
00:46:55
amanda
I appreciate that. It's hard. I don't know. Like your, this question, Raquel comes at an interesting time where last night, Danny ended up having a softball game.
00:47:07
amanda
So he left at like seven, 15, seven 30. And the girls were asleep and I'm laying in bed and I'm exhausted at this point. And I'm just like kind of mindlessly in bed, whatever.
00:47:20
amanda
And then I hear the PDM for the Omni pod, like give the alert. that it's time to get changed. And I'm like, Oh my God, it didn't get changed. So then I get up and at this point I'm feeling okay.
00:47:33
amanda
She fell asleep and she's flat at 120. Hmm. Maybe we're not going to have that insane spike that we usually do.
00:47:40
Amanda
Mm hmm.
00:47:40
amanda
Cause in the last week, the growth hormone spikes, spikes as soon as she's fallen asleep have been wild, like needing two to three times the amount of insulin than she normally does for correction at night.
00:47:47
Amanda
Yep.
00:47:52
amanda
And um so I go and change it and she's pretty good she like sleeps through it for the most part. But of course it was the one night she had her zippered like fleece onesie on so I had to like wake her up enough to like pull her arm out like, why can't you just be in a two piece so I can lift up.
00:48:04
Amanda
Yeah.
00:48:11
amanda
your shirt but whatever it was fine and then we had to do some finger pricks because it wasn't quite making sense and then I had to get up and dose once twice three times because I saw her starting to rise
00:48:17
Amanda
Mm hmm.
00:48:27
amanda
And I gave her that dose when she was at like 150 and I was like, okay, that'll slow it down. Next number was like 185. Oh my gosh, we need a huge dose. Let's do it. And now I'm thinking I'm good.
00:48:38
Amanda
yeah
00:48:39
amanda
I've done my due diligence as a mom. I can really let myself rest. And I had my high alarms to go off every 30 minutes because I was just like, I don't need to hear it buzz every five minutes.
00:48:52
Amanda
yeah
00:48:52
amanda
And then it went off 30 minutes later and she was like 240 double arrows up. And I was like, oh my gosh.
00:48:59
Amanda
Oh.
00:49:00
amanda
So then I had to go get up and give her more. And at this point, I can't give myself grace because if I had, ah as much as I needed that 30 minute break from being buzzed every five minutes in my head, if I had not done that and not been so selfish, even though it's not selfish and everyone can say, Amanda, you're doing everything you can, blah, blah, blah.
00:49:04
Amanda
Nope.
00:49:23
amanda
But internally, I feel like that's a selfish move. then I could have given her more insulin earlier, hopefully prevented it from skyrocketing like that. And then we're in this position where she's high experiencing glucotoxicity needing so much insulin, which then resulted in a low because she needed a big amount of insulin late enough into the night where once it was three hours after that bolus,
00:49:52
amanda
And the tail end of that bolus of insulin was in her body. Her body had no more reserves of growth hormone or food to combat the insulin. So then she's going low.
00:50:03
amanda
it was just
00:50:04
Amanda
I was about I mean, that's what I'm listening this I'm like I hear what you're saying and I would have felt exactly the same way and And you didn't know exactly how much insulin it was going to do.
00:50:17
Amanda
So we're always doing that mental math of how much do I want to crush this thing? And it always happens at night, right? It's always at 10 o'clock.
00:50:23
amanda
Yeah.
00:50:25
Amanda
And how much do I want to crush it? And how much do I want to deal with a low at 2 a.m. if i if I overdo this?
00:50:30
amanda
Yes.
00:50:33
Amanda
and it It's that hour, those two hours between eight and 10, and we have started to recognize it. So one thing I know you and your husband, I think sort of split the care duties.
00:50:48
Amanda
Um, Andrew is very involved. However, I will say like I take on primary responsibility for Cooper. So Andrew doesn't have two sets of numbers in his head at all time.
00:51:00
Amanda
Like that's, that's a little crazy, you know, cause they don't always coincide.
00:51:03
amanda
Yeah.
00:51:05
Amanda
So because I take on that primary responsibility, there've been plenty of nights where I'm watching a number rise and you know, he'll come in and we're watching a show and try to make a joke.
00:51:11
amanda
Yes.
00:51:15
Amanda
And I'm like, I will kill you right now. i I cannot punch diabetes and I can't take it out on this kid, but I will take it out on somebody and I'm sorry, it's going to be you. So now we've gotten to the point where I'm like, I can't. I can't talk about it right now. I know you want to talk about this work thing going on or you want me to help you with this.
00:51:38
Amanda
I'm so angry right now because I can't figure out exactly how much insulin to give him. That's either going to bring this down and not wake us both up at 3 a.m.
00:51:43
amanda
Yep.
00:51:47
Amanda
in a few hours, you know?
00:51:48
amanda
Yeah. Yeah. Cause you're stuck with this option of like giving a little that you know is definitely not enough to actually get it down and then being like, okay, I gave you a little, but now I have to just forgive myself for letting you run high and you're going to wake up and feel like shit.
00:51:55
Amanda
Yep.
00:52:03
Amanda
and
00:52:04
amanda
or I'm going to give you enough that I think you actually need and keep my fingers crossed that that you don't go low because then when you go low, you're going to feel like shit.
00:52:14
amanda
So either way, you're going to feel like shit and I'm just stuck in this teeny tiny little sliver hoping that the decision I make in a second's time
00:52:16
Amanda
Yep.
00:52:26
amanda
allows you, my child, to get the night of sleep you freaking deserve.
00:52:31
Amanda
Yeah.
00:52:32
amanda
And it's just like so yes and need, yeah.
00:52:32
Amanda
And need. Mm hmm.
00:52:35
amanda
And I, and when she did go low, my husband was snoring and we do, we split our um you know, how much we do, whatever.
00:52:46
amanda
And I rolled over and just gave him a swift elbow to the side because I felt I was so tired and frustrated that I just felt like I'm done.
00:52:46
Amanda
Yeah. Yeah. Yeah.
00:52:57
amanda
I did this stuff from seven fifteen to ten. I'm done, you know, and then he was up for an hour and a half. And then at one point he came in and I was like, is she OK?
00:53:10
amanda
Because he had to triple check with a finger poke, whatever.
00:53:12
Amanda
Oh.
00:53:13
amanda
And he was like, yeah, she's fine, but I have a meeting at 5 30. So can you take over again? I'm sorry. And it's like, yeah.
00:53:22
Amanda
Yeah.
00:53:23
amanda
Yeah.
00:53:24
Amanda
Yeah.
00:53:24
amanda
What am I going to say to that? Of course. Like, of course I will take over when you have to wake up in four hours for an important meeting.
00:53:27
Amanda
Yeah. Those times.
00:53:32
Amanda
Yeah, of course. I will say Andrew, if he goes low in the middle of the night or we need to check, he is the one who will do that because God bless him. That man can fall back asleep in two and a half seconds.
00:53:44
Amanda
And if my feet hit the floor, it
00:53:46
amanda
You're up.
00:53:48
Amanda
This is, yeah, it's a whole, you know, so we kind of, we kind of weigh that out, but I'm listening to this and then I'm thinking, you know, it's even more fun when you do everything exactly right and you nailed dinner and they're sitting at 110 and then 2 a.m.
00:54:01
amanda
yep Yeah.
00:54:04
Amanda
the compression low goes off and you're just like, ah, Dexcom, it's just and the worst.
00:54:12
amandacberg
I feel like all this highlights that there are a lot of lose-lose situations in diabetes and like sometimes people are looking for well how do you do this exact thing so that they end up in this exact range and like it's not I even experienced that going to a new cycling studio the other day and I was spiking a little bit before but I knew that if I gave insulin I would crash during the class because I'd have insulin on board so I barely gave any and then I took off my pump during the class I started at like 200
00:54:13
amanda
yeah
00:54:22
Amanda
You can.
00:54:33
Amanda
help
00:54:38
amandacberg
ended up staying around 170 the whole time but it made my workout so much harder and I did not feel good but I didn't have to leave the class and I really didn't want to do that at this new studio I'd never been to and like half had my tooth box next to me and I like didn't want to have to do that while I'm sitting on this bike like it's just so uncomfortable and I don't think there is a perfect thing I could have done then unless I went into that class at a perfectly steady 110 with no insulin on board which just wasn't the reality you know and I was like that way
00:54:41
Amanda
Oh.
00:54:50
Amanda
Yeah.
00:54:50
amanda
Yeah.
00:55:05
amanda
Yeah.
00:55:06
Amanda
Almost, almost never. Amanda, does Hattie feel her highs?
00:55:13
amanda
um Only if she is over the 220-ish mark for longer than a couple hours, then she's she doesn't verbalize anything for highs or lows.
00:55:20
Amanda
Then she will.
00:55:24
Amanda
Yeah.
00:55:29
Amanda
Mm-hmm.
00:55:30
amanda
um Lowes, she'll say, I don't feel good when she's in the thirties, which is terrifying. And we're trying to work on that.
00:55:35
Amanda
Yeah.
00:55:36
amanda
But at the end of the day, if like she is saying, I don't feel anything, what am I supposed to do about that? People are always telling me, like you need to teach her.
00:55:41
Amanda
Yeah.
00:55:44
amanda
I'm like, fucking how?
00:55:45
Amanda
How?
00:55:46
amanda
How in the what in the world? you What do you want me to do? Swing her around a million times and be like, now you're dizzy and 60. This is what it feels like. What the fuck? i don't That is one of my biggest pet peeves.
00:55:56
amandacberg
Bye
00:55:57
amanda
I'm sorry.
00:55:58
Amanda
Yeah.
00:55:58
amanda
You need to teach her. How am I supposed to teach a child? Anyway, who claims they don't feel anything. But when she's high over 220 for over two hours, her mood changes.
00:56:08
Amanda
yeah
00:56:10
amanda
She's super irritable. She complains about being thirsty. She's like kind of trips and falls ah all over the place. She's really tired.
00:56:17
Amanda
Mm hmm.
00:56:17
amanda
She's super moody. um So I know that she's feeling it.
00:56:21
amandacberg
-bye.
00:56:22
Amanda
Yeah.
00:56:22
amanda
And yeah, what about Cooper?
00:56:24
Amanda
Yeah, Cooper will feel his lows. He's gotten very good, in especially in the last six months, about articulating that. But listening to Raquel talk about even being at 170 and how that affected her workout, we're not there right now.
00:56:37
amanda
Yeah.
00:56:39
Amanda
i don't I think if it was prolonged, like, yeah, maybe a little grumpy, but the highs don't tend to affect him as much. But going back to our school conversation,
00:56:49
amanda
Mm
00:56:54
Amanda
It even shows more the reason you need that partnership because I was like, I'm teaching you now.
00:56:58
amanda
-hm.
00:57:00
Amanda
Eventually you're going to start teaching me. I don't know how Cooper is going to take a spelling test if he's sitting at 210. That's not an experience I'm going to have or can even create.
00:57:11
Amanda
so I'm like, at some point you're going to start to notice some of these things and how it affects his learning. Like we haven't really, you know, he's in second grade. Um, so that hasn't really been an issue up until now, but you know, it is always more than just the number on the Dexcom and the way we need whoever is with our kid to engage with us.
00:57:35
amanda
Yeah, yeah, definitely.
Communication Difficulties with School
00:57:38
Amanda
So.
00:57:38
amanda
ah Hopefully partnership is in our future.
00:57:43
amandacberg
Yes.
00:57:43
Amanda
It has to be.
00:57:45
Amanda
It has to be.
00:57:46
amanda
ah It needs to start with easier communication access because right now I am strictly only allowed to call the main school line and email them. So how in the world does that work?
00:58:04
Amanda
Yeah, I just, there's such a common sense aspect to it that is just ludicrous to me about it. But if for nothing else, don't you want to make your lives easier?
00:58:11
amanda
hey I know.
00:58:15
Amanda
Don't we want to, don't you want to be able to deal with this before you've got a kid's alarm beeping at decibels nobody wants to listen to for 10 minutes?
00:58:24
amanda
Yeah.
00:58:26
Amanda
um So for no other reason, I can't believe they don't want to make it easier on themselves.
00:58:31
amanda
I know there was one point a couple weeks ago where I had to call a bunch because she was skyrocketing like up 20 every five minutes and I wanted them to start sending an LVN over because it was a day that the health tech was the only one working and she can't give insulin even through a pump.
00:58:50
amanda
And um then all of a sudden, right after I called, of course, she like halted and then started coming back down.
00:58:53
Amanda
And, yep.
00:58:59
amanda
And so I like initially texted the nurse who wasn't there, but sees the school and she's like, you can't text me. And I was like, Oh my God. Okay. Um, and then I ah called the health tech again and just, it's so tense that there is no like warm and fuzzy.
00:59:20
Amanda
Yeah.
00:59:21
amanda
I can just feel them being like, what now? You know? And I was just like, I just wanted to tell you, like, she's coming back down. I know you don't have access to see this, so I'm letting you know, like, an LVN is not necessary anymore, like, sorry. And she was like, okay. And I was like, is this really the only way I can communicate with you? And she was like, yeah. And I started crying because I just couldn't help it. I was just so frustrated, like,
00:59:50
amanda
why isn't there a way to just quickly text you like, oop, just kidding.
00:59:50
Amanda
Yeah.
00:59:53
amanda
Like she turned around, I think she's fine. But instead it's become this whole thing where I'm like this super burdensome mother with outrageous requests and who's so intense and like messing everything up.
00:59:56
Amanda
Yeah.
01:00:09
amanda
And it's like, a I, I, what?
01:00:15
amanda
I just want to be able to text someone and be like, nevermind, she's good. And for them to be like, cool, we'll watch it.
01:00:20
Amanda
and And there's no way around this for you because, you know, in a lot of our lives, we all have challenging relationships and you sort of figure a way around like, okay, I'm not going to do as many meetings this with this person or I'm going to avoid them in this situation.
01:00:40
Amanda
It's like I said to my teacher or Cooper's teacher at the, you know, when we were doing our meeting, I was like, welcome. There will never be a day until Cooper leaves your class that you and I are talking.
01:00:52
Amanda
That's what diabetes is. There, there is never a day that you're not getting a text from me.
01:00:57
amanda
Yeah.
01:00:57
Amanda
And so you, this is relentless. You don't have a way to avoid this. So making it this awkward and uncomfortable for you is well,
01:01:03
amanda
Yeah.
01:01:09
Amanda
You know I have words about it. I'll choose to keep my mouth shut on the podcast.
01:01:13
amanda
Well, apparently we caught their attention, so yeah, that's all I have to say about that.
01:01:20
Amanda
yeah
01:01:22
amandacberg
Well, this is one of my favorite conversations, seriously, like I feel like we went into so many great topics that we haven't talked about before. Thank you so much for just sharing so much. And I really just value your perspective. I think a lot of parents can benefit from hearing it. So
01:01:37
Amanda
Thank you.
01:01:37
amanda
Yeah, it was so good.
01:01:38
Amanda
this It's so nice to be able to talk to some somebody who understands and who's been in those exact same trenches with you. um I loved every second of it.
01:01:49
Amanda
Thank you so much for having me.
01:01:51
amanda
Oh my gosh. Thanks for being here. And if you're ever in San Diego, you've got friends and places to stay.
01:01:57
amandacberg
and
01:01:57
Amanda
Absolutely.
01:01:58
Amanda
Same to you guys.
01:02:00
amandacberg
All right, everyone. We'll see you next week.
01:02:00
amanda
Thanks.
01:02:03
amandacberg
Bye.
01:02:03
amanda
Bye.