loader from loading.io

Minisode #4: Why We Went "Untethered"

Diabetes Connections with Stacey Simms Type 1 Diabetes

Release Date: 01/23/2020

Minisode #7: Spare a Rose / What Can We Do About The Price of Insulin? show art Minisode #7: Spare a Rose / What Can We Do About The Price of Insulin?

Diabetes Connections with Stacey Simms Type 1 Diabetes

Two big topics for this mini-espidoe. Stacey talks about Spare a Rose and talks to the leaders of Patients for Affordable Drugs. Spare a Rose is an initiative to get insulin and other vital diabetes supplies to children in the developing world. Stacey also talks about what we can do about the price of insulin with founder David Mitchell and Lauren Stanford, the community organizing director. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!        Episode transcription:  Stacey Simms ...

info_outline
Ask The D-Moms: Driving, Independence and Ask The D-Moms: Driving, Independence and "Holding Hope in our Hands"

Diabetes Connections with Stacey Simms Type 1 Diabetes

Ask the D-moms is back! We’re tackling leaving kids home alone, keeping perspective when you’ve been in the diabetes community for a long time and driving with T1D. Moira’s daughter was behind the wheel before CGMs and Stacey's son just got his permit. In Tell Me Something Good, an amazing way to raise awareness.  We’ll talk about the .. and its’ going on right now. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to...

info_outline
Minisode #6: Whose Graph Is It Anyway? (A D-Parent's Struggle) show art Minisode #6: Whose Graph Is It Anyway? (A D-Parent's Struggle)

Diabetes Connections with Stacey Simms Type 1 Diabetes

Watch your language! That's what Stacey is trying to tell herself this week. When you're a parent of a child with a chronic condition, it's hard not to say things like "our diabetes" and "our CGM graph." But it's not "ours" exactly, so how do we better talk about this? Stacey also shares her frustration as she finds herself falling into the trap of perfect numbers and trends. While her and Benny's experience with Control IQ has been wonderful so far, it's also bringing back some of that perfection trap she thought she'd left behind. ----- available to Diabetes Connections listeners! -----...

info_outline
What Is Monogenetic Diabetes & Why Should You Care? show art What Is Monogenetic Diabetes & Why Should You Care?

Diabetes Connections with Stacey Simms Type 1 Diabetes

This week.. what is monogenetic diabetes and why should we – on a mainly type 1 diabetes podcast – care about it? The majority of people with monogenic are misdiagnosed as type 1. People like Kristin Skiados who thought she’d lived with type 1 for 38 years and her daughter Ava, was also misdiagnosed. We’ll talk about how this could happen, what it means for the rest of us and what monogentic or MODY is all about. In Tell Me Something Good, how a little sister’s diagnosis changed a sibling's outlook and career.. And what the heck is a diabetes merit badge? This podcast is not...

info_outline
Minisode #5 - Stop Posting Sick Day Photos of Your Kids! show art Minisode #5 - Stop Posting Sick Day Photos of Your Kids!

Diabetes Connections with Stacey Simms Type 1 Diabetes

Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress. What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids. Links referred to in the episode can be found in the transcription below. ----- available to Diabetes Connections...

info_outline
DiabetesWise - A Consumer Reports for Diabetes Technology show art DiabetesWise - A Consumer Reports for Diabetes Technology

Diabetes Connections with Stacey Simms Type 1 Diabetes

Choosing your diabetes technology can be complicated. Wouldn’t it be nice if there was sort of a Consumer Reports for pumps and CGMs? We found out about from people who know it’s about more than the hardware. Stacey talks with Dr. Korey Hood who lives with type 1 and is with Stanford University as well as Laurel Koester, with the Helmsley Charitable Trust. Together, these two groups created Diabetes Wise. Stacey, Korey & Laurel talk about how it works and  why it’s needed. Stacey spoke to Korey on a previous episode about diabetes gear and mental health. In Tell Me...

info_outline
Minisode #4: Why We Went Minisode #4: Why We Went "Untethered"

Diabetes Connections with Stacey Simms Type 1 Diabetes

Using a shot of long-acting insulin along with an insulin pump sounds like a weird idea. But Stacey found when her son's insulin needs went way up around age 11, that it worked incredibly well for them. She explains the method of untethered, which is also sometimes called POLI (Pumping On Long-Acting Insulin), what led them to believe it would work, and why you don't always need to use a ton of insulin to benefit from it. ------ ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!        Episode...

info_outline
Competing on Food Network Kids Baking Championship With T1D show art Competing on Food Network Kids Baking Championship With T1D

Diabetes Connections with Stacey Simms Type 1 Diabetes

When 11 year old Elise Sammis applied for the Food Network's Kids Baking Championship, she didn’t think twice about telling them - right up front - that she lives with type 1 diabetes. She says she wanted everyone to know in order to show that diabetes wouldn't keep her from her love of baking, or anything else. Turns out, there's another young woman with type 1 on the show this season! Stacey met Elise & her mom, Natalie, at an event in South Carolina. They spoke about the show, the stress and her diagnosis two years ago at Disney world. In TMSG - good news at the dentist - and it...

info_outline
Minisode #3: What I Want From Tandem's Control IQ show art Minisode #3: What I Want From Tandem's Control IQ

Diabetes Connections with Stacey Simms Type 1 Diabetes

  As we all wait for the release of the newest hybrid closed loop software, Stacey has some thoughts about what she hopes it'll bring to her family's experience. Transcription below! ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!        Episode Transcription Stacey Simms  0:00 This episode of Diabetes Connections is brought to you by “The World's Worst Diabetes Mom, Real Life Stories of Parenting a Child With Type One Diabetes,” available now as a paperback eBook and audiobook, Learn...

info_outline
All About Babies and Toddlers with Type 1 Diabetes show art All About Babies and Toddlers with Type 1 Diabetes

Diabetes Connections with Stacey Simms Type 1 Diabetes

We're talking about the youngest people with type one diabetes: babies and toddlers. When you can't talk and you're barely eating solid food, the challenges of T1D rise to a new level. Stacey's guest is Pediatric Endocrinologist Henry Rodriguez, the clinical director of the University of South Florida Diabetes Center. The interview features everything from breast feeding, diluted insulin, pump and CGM use in babies and much more. Resources: Facebook groups:   In Tell me something good. The other end of the spectrum: celebrating a long life with type 1 - 64 years since diagnosis...

info_outline
 
More Episodes

Using a shot of long-acting insulin along with an insulin pump sounds like a weird idea. But Stacey found when her son's insulin needs went way up around age 11, that it worked incredibly well for them. She explains the method of untethered, which is also sometimes called POLI (Pumping On Long-Acting Insulin), what led them to believe it would work, and why you don't always need to use a ton of insulin to benefit from it.

More info on untethered here

More info on Tresiba here 

------

Check out Stacey's new book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode transcription (rough transcript, please excuse any grammar, spelling, punctuation errors)

 

Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom, Real life stories of parenting a child with Type One Diabetes available as a paperback eBook and audio book. Learn more at diabetes connections.com

Announcer 0:21

this is diabetes connections with Stacey Simms.

 

Stacey Simms 0:27

Welcome to an episode of diabetes connections. I'm your host, Stacey Simms, and this is one of the new episodes I've added for this year. Where in addition to the weekly interview shows that are longer. I have started doing these shorter mini episodes where it's just me talking about one topic, hope you're enjoying them. It's been really fun to get the reactions and hear what people want to hear more about. So if you're brand new, just real quick. My son was diagnosed right before he turned two back in 2006 he is now 15 and a freshman in high school taller than me, and recently got his permit to drive like North Carolina. And our young, young permitted drivers are graduated licensing. But that's not what we're talking about today. Just to give you context on how old he is, and you know where we've been, he was diagnosed 13 years ago.

 

couple of episodes back. I mentioned Tresiba. I was actually talking about a Tell me something good segment on the show, which we do every week. Um, a family was sharing their last night of Lantus because their daughter was going out of pump, and Lantus really burns. So I was talking about Tresiba, which is another newer, long acting insulin as an alternative. And I had a couple of people asked me about that, one through email and a couple online. Don't you use Tresiba, they said, as an untethered method for Benny, and I thought this would be a really good chance to answer that question and talk a little bit more about what's called untethered or POLI. They both kind of mean the same thing. They're a little bit different, but we'll go through them.

I will start out by saying, once again, I am not a medical professional. All of the information I'm giving you here is through my personal experience as a parent of a child with Type One Diabetes. I am not a healthcare provider, please call your endo or your care team to follow up and ask them any questions especially about a topic like this one. But this is the kind of topic I love sharing about because the only reason we tried untethered, which changed my son's life and has just been amazing. Over the last. It's been more than a year now. We started in September of 2018. So the only reason we started it is because another diabetes mom reached out and said, Hey, have you thought about trying this? So Cheryl, thank you very much. I'm just trying to pass along the information here.

So what are we talking about? Well untethered means making use of an insulin pump. pump and taking long acting insulin at the same time, a lot of people use untethered to mean that they only use the pump for boluses. So in other words, all of the basal would be coming from the long acting shot. That's why another term has cropped up which is POLI pumping while on long acting insulin. And that is supposed to mean where you do something a little bit more flexible 50% of Basal from the pump 50% from the long acting, and all of the boluses from the insulin pump, and that's actually what we do, but I still call it untethered. So for the purposes of this podcast untethered is going to refer to any use of an insulin pump with long acting insulin, whether you're doing 20%, long acting 100%, long acting Basal, that sort of thing, just for conversational purposes. I think untethered is an easier way to go. I have been criticized online For calling it untethered, because I guess technically it's not correct, but you know me that has never stopped me before.

Alright, so why would you use it? Right? What this is my question, why would you go through all of the bother that is an insulin pump, right? inserting the inset every three days wearing the pump itself, you know if you've got little kids wearing it in the pouch, or if you've got the Omnipod schlepping the PDM around, you know, why would you do all that and then add a shot of long acting? Well, in my case, I couldn't imagine it until Benny became a teenager because what happened was his insulin needs went up so quickly and went up to numbers I never thought we would see. I didn't know people could take that much insulin and be ok.

And in our case, and this is a layperson opinion, but I stand by it. I think the insets get overloaded. You know when your basal rate is 40 50, 60 or more units a day. Those insets just They don't seem to be able to keep up. We had so many leaks. We had so many issues. And we tried everything. We rotated sites. We tried a longer needle. We tried every two days every one and a half days. But you know, I turned around the insulin would be like leaking down this kid's stomach. And we knew that it just wasn't working. Something wasn't going right. Plus, he has the Tandem tslim X2 which holds 300 units, we had switched from Animas which held 200. I mean, no pump holds exactly about that. It says it was always a little bit less because you have to prime it and blah, blah, blah, if you use a pump, you understand. But with that 300 units, he was still changing out his cartridge so much more often than before. And I knew that something had to give.

And then Cheryl reached out online and said, Hey, I really think you might want to try this. It really might help. So we talked to our endo about it. He recommended Tresiba which was also what Cheryl had recommended which is a newer long acting. And I always laugh because when I talk about Tresiba, I feel like I'm talking about whiskey Right, it's smooth. There's no burn. It's steady. It just doesn't sound like you're talking about insulin. But all those things are true. And it just lasts longer in the body than Lantus or Levimr. And that works really well. For some people, it doesn't work as well. For others. Of course, your diabetes may vary as always. But what's nice about Tresiba is once you hit the steady state, once you've been taking it for three to five days, there's a little bit more flexibility in when you have to take it. In other words, if you take Lantus every day at seven o'clock at night, you really have to take it at seven o'clock at night. There's there's not a lot of wiggle room with it. But of course, it's always better to take it at the same time. But with Tresiba you can miss that dose. We have missed the dose by several hours. And it really has been okay. It just works a little differently in the body and I'll link up more information as to why it's a different makeup. It really does work differently in the body and it's been amazing for us.

So we worked with our endo and CDE to figure out the dosing, because we had to change it gradually over time to get to I believe we started out with 30% basal from Tresiba 70% from the pump, and we gradually moved it up. And now he's 50-50. It really took about three months to find the right dosing because we were hitting moving target, right, we went from 30 to 40 to 50%. And we were changing things all the time. But we saw changes right away. I mean, it was incredible. Once those basal rates in the pump came down, it seemed to work so much more efficiently. I really do believe it was the insets, but even if your insetts are working great, and your basal rate is like 20 a day, you know, if it's different and you're not a teenager, why would you want to try this?

Well, interestingly, the first people I ever heard of doing untethered, were adults. And the reason that they shared with me was, they just had a little bit of trouble, especially at first trusting the insulin pump. You know, think about it. If you've taking shots, your whole life with diabetes. And suddenly you're on an insulin pump. But you know, it's been 10 years or 20 years, it may be difficult to trust it, not just the technology, but you don't see the insulin going in, like you do with shots. So both adults said that they started with untethered, because it was kind of an emotional thing. They wanted to make sure that everything was working, they wanted to kind of ease into the pump. And then one person did that for a couple of months and one person stayed on it. And I have another friend who has really bad anxiety and she found herself worrying. Are my insets working? Do I have a bad cannula, is something's gonna go wrong while I'm sleeping. And her endocrinologist prescribed, untethered to help her with that anxiety and to help her feel better and to know that the insulin is indeed going in. And that's made a huge difference for her too. So there are a lot of reasons why you consider something like this.

But I think the most important thing is to know what's out there to know that this is something that you can do. You don't have to do it forever. You don't have to do it at all. But if you want to try it out, you talk to your endo. And you can do it for a couple of weeks, couple of months. Keep it or not, if it doesn't work for you, nothing ventured, nothing gained. And if it works, it could work amazingly well. Benny hit puberty and oh my gosh, I'm sorry, I don't wanna get too personal on him. But I do want to share this. He hit it like a rocket ship. I mean, it just happened so quickly. It was and he was younger than most kids. And his insulin needs went way up, his numbers went way up, because we really didn't understand what was going on. You know, we were doing everything we felt we were supposed to be doing. I was helping him at the time. So I know it wasn't a question of not bolusing. But whatever we did, you know, once you get high, it's so hard to come back down and that was happening all the time. And in my head I'm thinking, you know, is he eating when I don't know about it, is he not taking insulin, you know what's going on, and it was the basal rates, they just needed to be increased. And once we added Tresiba, and took the load off those insets, his A1C, all his numbers, his time in range, everything went back to pre puberty, even though his insulin needs have gone up, and his teenage hormones are obviously still there.

So he's 15. We just had an endo visit and things are finally beginning it looks like to come back down in terms of insulin use. So I don't know how long will stay on untethered and control IQ coming out is, you know, possibly going to change things for us. But he has said he wants to stay on untethered for at least a month into control IQ, and our endo and our CDE supports that and of course, I do too, so we shall see what happens. But if you're a parent of a teenager, and you're freaking out, because their numbers have started to get really high, and you think, oh, they sneaking food, are they not bolusing, but you know, that doesn't feel right. You just don't think that's really the case of what's happening with your kid and I don't want to talk about sneaking food that's those two words should not be used together. So let's just say eating food without bolusing. That's a different topic for another time for sure. But you You're not sure what's going on with your kid. Do not assume the worst is all I'm saying, do some basal testing, talk to your endo about basal needs. Because if like me, your kid was diagnosed at two. And the first basal rates you ever saw on a pump were 0.025 when they suddenly shoot above needing three full units every hour, it's easy to think this can't be happening. This isn't possible. But it is. And this is just one way to kind of help ease the pressure off the pump. If that's not working the way you and your endo think it should be. It's an alternative to think about that really, really helped us.

It is no fun to take a shot every day. I give Benny so much credit. Although now he rolls his eyes at me. I can't even say like, I'm so proud of you. And he's like, Mom, you're so lame. But you know what I mean, right? It's not me taking the shot. It's not you if you're a parent. So we really have to get our kids on board with this. I'm not above incentives. Try this for a month. You know, here's 25 bucks for Amazon, or whatever works in your family. But I think it's important to at least ask these questions rather than live day in and day out wondering, what are we doing wrong? Feeling like a failure. teen years are tough enough. And I know, you know, using Tresiba isn't gonna solve everything. But I talked to so many parents who just don't realize how high the insulin needs can get. I mean, look, a basal rate of four units an hour. sounds crazy, but it's not that uncommon, using 80 to 100 units a day of basal insulin. It sounds bananas. But for some people, that's what they need. And people who don't have diabetes, their pancreas is are just pushing this insulin out as teens. You have no idea how much insulin your kids’ friends without diabetes is making them his body. They need what they need. So talk to your care team about it. Talk to your kid about it. And if nobody thinks it's a good idea, just remember, I am the world's worst diabetes mom.

Oh, I will would be remiss before I go to not say, while I have sung the praises of Tresiba, like everything else in diabetes land, you're often at the mercy of your insurance company. We were very lucky to find that this was covered. But it is not always it is a much newer, long acting, so you may have to fight for it. definitely make sure your endo is willing to go to bat and help you appeal if need be. If this is something that you really feel strongly about, and they do, too. You don't have to use Tresiba as the long acting to go untethered, it's just what has worked for us, but unfortunately, it is so new that a lot of insurance companies do not cover it yet.

Alright, we are doing these minisodes every Thursday, and every Tuesday, we have our regular length interview shows where I talked to newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people just living with Type One Diabetes. Learn more at diabetes connections.com. You'll also find the episode homepage and links to a lot of what I spoke about here, including studies about untethered and a lot more information so head on over to the website, please be sure to join the Facebook group diabetes connections group. I'm Stacey Simms, and I'll see you back here next week. Until then, be kind to yourself.

 

Benny 14:19

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

 

Transcribed by https://otter.ai