Welcome back to the Healthy Diabetic Podcast . I'm your host coach , ken Kinnis , diabetes Coach , type 1 Diabetic Nutrition Coach and Strength Coach . Before we get started , please remember that nothing that you hear on this podcast should be considered medical advice or otherwise . Please always consult your medical team before making any changes to diabetes management . Okay , we'll jump right in here .
Speaker 2Today I had the amazing pleasure to sit down with Grayson and his family . Grayson is one of my campaign way kids . He was on the podcast a little bit ago as one of the campaign way kids , so if you want to listen to that episode , go ahead and go back and listen to that episode . It's a very good episode of him just quickly talking about his diagnosis story . But we got to hear his diagnosis story in a little more depth in this episode and his mother , who is his primary care parent , was also in attendance , and his father , who is also a Type 1 diabetic , was in attendance .
Speaker 2So I got to have a really good conversation with these three individuals talking about their different perspectives on diabetes , how they have come together , how Brian and Sarah Grayson's parents have come together and built and developed a strategy of parenting Grayson and his Type 1 diabetes , and we also got to hear a little bit about Brian's diagnosis and how he's been doing with his diabetes for the last 31 , 32 years . So this is a really good episode from the perspective of all three of these amazing individuals . I'm really excited for you guys to hear this conversation . So , without further ado , let's get with Grayson , sarah and Brian .
Speaker 3My name is Grayson Adams . I'm 13 years old . I was diagnosed in September of 2020 . I don't I think we're gonna start school , because I was homeschooled at the time and we were gonna start school that day , but so I've been showing a lot of the signs of having diabetes drinking a lot of water .
Speaker 4Going to the bathroom a lot . Yeah , going to the bathroom a lot .
Speaker 3Just those kind of things .
Speaker 4Losing a ton of weight .
Speaker 3And I was pretty much skin and bones . And then my mom told my dad check his blood sugar , like just to see , just to make sure , just to be safe . And when they did , I think it was like 220 , I think around there . I honestly can't remember how high it was , I feel like it was 220 .
Speaker 4220 , 250 , but he didn't tell me that Brian had checked it . So he came downstairs after he checked it and I gave him a chocolate chip muffin for breakfast . And then his dad comes down and says by the way , I checked his blood sugar and it's high . Can you go ahead and call the doctor ? And I said well , how high . I just gave him like a giant muffin .
Speaker 2Oh gosh .
Speaker 4So we told the doctor and they went ahead and told us to go straight to nationwide children's at that point .
Speaker 3Yeah , you could finish .
Speaker 4Yeah that's crazy .
Speaker 2It's like , yeah , it's crazy because there's so many people that I talk to , like adults , kids , that they're way higher at diagnosis , like way higher than 250 . And that's interesting that you guys were . You know , he was that low .
Speaker 4Yeah , that was his fasting flutter , like he hadn't ate anything that morning . But then by the time he got to the hospital it was like 600 , 600 or 700 . I don't remember . So as soon as that muffin hit he definitely spiked up .
Speaker 2That darn muffin .
Speaker 4I think that's part of the . Yeah , that was part of the thing they kept saying . You don't usually come in with like a 250 blood sugar . So when they were working on diagnosing , grayson said he remembers them saying like well , we're going to take some more readings and they weren't quite sure .
Speaker 2What the interesting thing about that , though , is like you know , brian , you're type one too , right ? I am , yeah . So his dad's type one . He's coming in with this high blood sugar Like it's a fast , like everything about that , everything about his symptoms , everything about it is screaming like , okay , just do a C-peptide test and you're fine . Okay , let's figure out this . Figure this out for real . Why are we doing more like finger pricks ? Why are we doing like more testing ? Like that Just do a C-peptide test , that'll tell us .
Speaker 4Yeah , definitely .
Speaker 2So yeah , it's so interesting . And then , how long did you guys spend in the hospital ?
Speaker 1It was short really .
Speaker 4Well , I found out that it's not so short now from meeting other families . But for our hospital , our children's hospital , he went in on a Monday and came home Thursday night , I think , because they were supposed to leave to go camping Friday and he didn't want to miss to go camping .
Speaker 3Yeah .
Speaker 4So , but we're finding out now that sometimes it's just like two days as soon as you get those blood sugars regulated .
Speaker 2Yeah , as soon as you get back in normal ranges they just like okay , it's PC when it used to not be like that 20 years ago it used to be not be like that . Brian , I can't wait to hear your story too . It's like you know , I have a really good friend that he spent . I mean , there's so many people had spent like a week in the hospital and with just a constant education and learning and like and that's not . That's not the reality of the situation anymore . It's crazy .
Speaker 1Yeah , yeah , it was much different . My experience like sitting through everything with him , thinking back to being an 11 year old going through myself . I'm glad he didn't have to go through everything I did , but yeah , it's definitely much different .
Speaker 2Yeah , so that's interesting and , brian , if you're comfortable , and if I'd love to hear your story about , like , what happened with you and like you know you're , you're 11 , how do you know ?
Speaker 1I'm 42 .
Speaker 2Wow , yeah , so I mean you , you've had it for a long , long time .
Speaker 1Uh-oh .
Speaker 2That leaves you guys , sorry .
Speaker 1Yeah , there we go .
Speaker 2Okay , sorry about that , right , yeah , so you've I mean you've had it for a long time , and and back when you were diagnosed , things were totally different than they are now .
Speaker 1Yeah , it was . It was definitely a big difference . Um , so I mean when I was diagnosed . So it's funny . I mean both with Grayson and myself as a kid . So my father was a firefighter and EMT , like , so he should have known the signs . It was one of those things , sarah and myself Sarah was previously a paramedic and I was still a paramedic and then obviously I've been a diabetic for you know , 30 , 31 years .
Speaker 3Yeah .
Speaker 1Like we should have recognized the signs earlier . I mean , luckily we I mean we recognize them kind of early anyways . You know , I can remember back when I was a kid , Um , just that whole scenario . So Sarah likes to joke a lot with me about my parents and how I was raised as a kid , Um , and some of the choices that I got to make as far as eating and meals and stuff that I won't go completely into that , but not the best , not the best diet
.
Speaker 2Not alone man . I was in the same boat , man .
Speaker 1Yeah , um , and I guess I'll come back to that , because there's one thing I remember about sitting in the doctor's office , but , um , I remember that day , um , I had recently , prior to that , I played hooky from school . So , when I get my mom , the story about not feeling good in the morning . So I stayed home from school , you know , a couple of weeks before uh woke up that morning . Um , well , uh , rewind a little bit , but , um , I can remember . One thing that I do remember is going to McDonald's and going through the drive-thru and getting , at the time , a large Coke right With my value meal that that I get , you know , going through the drive-thru or whatever , getting the large Coke and drinking it before we got out of the drive-thru , like you know . So , like the thirst , like I can remember that , which obviously you know now I'm drinking a super size , you know , coke full of sugar . Probably didn't , didn't help my situation . But the next morning , uh , waking up , just feeling awful and then getting the lecture from my mom about you know , I've used my freebie for for that quarter or whatever , like you're getting after going to school , like you're not , you're not screwing with me , um , so she made me get out of bed and then I can remember throwing up shortly after that . So she's like , oh well , maybe he really is sick , um , and then you know , I don't , I don't know , you know what'll happen between that .
Speaker 1But obviously my parents , you know , they started thinking about it , um , so they made a doctor's appointment and as soon as we got to the doctor they took me back . I mean , obviously they had an idea of what was going on . You know , they checked my blood sugar and it was . I mean , I remember being like over 600 at the time and remembering just kind of the look on my dad's face when they tried to explain what was going on to me . And I can't remember thinking like when they basically said my body can't process sugar , like I remember saying so does that mean I can't ever have ice cream again ? That's the one thing I remember from being in the doctor's office was the thought that I'm never going to be able to eat ice cream . Anyways , fast forward . They wanted to call a medic to have me transported to the hospital , obviously my dad being a firefighter who can do everything .
Speaker 1He's like no , we're fine , I'll take him over to children's . So we went over to date in children's and I mean I know I spent at least a week in the hospital with that diagnosis and just everything like going through the finger pricks so many times a day , like it was just as hard as it was for Grayson . I feel like it was totally different for me , yeah , totally different .
Speaker 1And I'm glad that you didn't have to go through all of that . Yeah , multiple injections , multiple injections a day , and just having to get over giving yourself shots and all that . Yeah , it was rough . And now I've had 31 years to learn all the bad habits and I've passed on to Grayson in just two short years , which has been difficult .
Speaker 2Yeah , but I will say , looking on the positive side of this , who better to be his parent than another type one ? That's the positive out of this . If we can look at some type of positive , that's the big positive I would really encourage you to look at is who better to take him through this than a type one ? Now , obviously , the management styles that you grew up with are totally different than management style Now . I mean , it's like he's on cloud nine right now compared to what you had to go through . So , yeah , give yourself grace , man . I can't imagine living in the era that you were diagnosed in . I am somewhat blessed , so I am .
Speaker 1You're back , you're back .
Speaker 2Yeah . So I would say that I can't imagine living in the era that you were diagnosed in , because I am so reliant on the technology . I'm so reliant on the data right in the palm of my hand , not having to write it down , not having to track it hour by hour . It's in my freaking hand and that's how I've become very good with diabetes and not having that technology . I can only imagine . Can only imagine .
Speaker 1Yeah , I can remember my mom putting together I mean it was , we called her the kit , but it was a little like shower totes or whatever to have the bupometer and the lancets and strips no Ketone test strips and everything together . But then my paper log kept in track of all my blood sugar in . Yeah , I can remember the first time that I forgot to check my blood sugar before I ate and thinking that my mom was going to kill me . I was at home after school or something .
Speaker 3Yeah .
Speaker 1And I still don't think she knows that I thought I was cheating this Because I just put a number in there that I thought sounded good and thinking that she finds out she's going to kill me .
Speaker 3Yeah .
Speaker 1Now everything is on this iPhone .
Speaker 2Technology is readily available to us . Yeah , it's incredible . It's incredible . Grace , you're on Cloud9, . Man , we got it so good . You don't even know . You don't even know , brian , did you have to pull your insulin too ? Like not to really age , you right , but did you have to pull the insulin and mix it and that type of stuff too ?
Speaker 1Yeah , yeah , I remember having , yeah , I had . So when I started there were so many units of regular insulin and then so many units of NPH insulin . So mixing that morning and evening . And then I remember transitioning to the long-agged volantis insulin with the short term , so the overnight shot and then also the boluses before every meal with the regular insulin . So going from two injections a day to like five injections a day trying to get better control .
Speaker 1And then I can remember it was shortly after Sarah and I got married looking at these new fangled insulin pumps and trying to figure out what all that meant . But at the time our insurance wouldn't cover it unless my A1Cs were all out of whack and I didn't have control . So I remember purposely . Well , maybe I should say this I remember purposely making my blood sugars go all out of whack so that they would approve it and get it going , which they did , and that was .
Speaker 4You were probably when you were 25 or 26 , usually , yeah .
Speaker 4And the crazy part of it too is that his whole childhood of diabetes he was going to his family doctor . When we start dating in our early 20s he said , yeah , my family doctor just controls everything . And I was thinking like there's got to be a specialist , like why is this not happening ? And then finally he got connected and with an endocrinologist . But he was like 23 , 24 when that happened and the endocrinologist was like somewhere , buddy , you fell through the cracks Like you should have been coming to this clinic a long time before this . But when you have a long time primary care physician , it seems like sometimes good intentions but they just didn't want to let go of having that care for him . I guess .
Speaker 2Right , which is crazy because it's like it doesn't mean the chronologist was like .
Speaker 2Yeah , it's crazy , when you think about that too , of not wanting to let go of that care . It's like the same thing with us being caregivers for our young kids and not wanting to let go of that care , and it's just that's one thing that you , especially as a professional . In my sense , it's like I want that individual to be with the best person , and if it's out of my scope of practice , then it's out of my scope of practice , like that's what being a medical professional is . So that's interesting and I see that all the time . Even today we see that and it's sad . It's sad .
Speaker 2And then you actually you look at it from the other's perspective , the other side of these family care practitioners that rightfully so they don't know anything about diabetes . My family care practitioner didn't know crap about diabetes . You know anything , didn't really know anything , and they knew how to give insulin . They knew that the formulas , like if you needed to go on insulin , but that's about it . And I almost feel like even some of the endocrinologists are like that . Everyone's living in this little black and white book of like here's what we should be doing for diabetes , when every person is different . Every individual is different . How this is , from the symptoms , from how you deal with food , from how your body breaks down food , from how you recover from highs or lows . Like every person is different , and when I realized that everything changed For me personally , professionally , everything changed , so it's interesting that these perspectives aren't adopted all over the place .
Speaker 4When Grayson was diagnosed , it was the first time that he had learned that not all dads have an insulin pump . Somewhere in us raising him , he assumed that when you become a dad you have an insulin pump , because that's all he had ever known . And so I remember walking in the hospital room and he's like guess what , mom , I'm getting my insulin pump early . I'm young and I'm getting one instead of when I become a dad . And that was like an eye-opener for us , because diabetes , since we've been married , it's always been Brian's life . So we forget sometimes that there is life outside of managing diabetes . So that was just pretty funny that he's like I had the jackpot I get mine early .
Speaker 2That's hilarious , that's awesome , that's hilarious , that's hilarious , but it's true . The environments that you grow up in and the environment that you're constantly in , you adopt those thought processes , you adopt that environment and it's yeah , 100% , 100% . Sarah , I would love to move to you now and just get your perspective on Grayson's diagnosis as mom , as going through it , your background and your work that you've done before . I would love to hear your perspective on Grayson and even Brian .
Speaker 4So yeah , like Brian said , I was a paramedic , so I had a pretty good idea of physiology of diabetes , but I didn't know that ends and outs until I would say after we were married Like really you don't live with a diabetic for a week or two and understand how it's kind of like a roller coaster , how there's so many ups and downs within even just a month period .
Speaker 4But then , looking over years and so , like I said , when we first got married , I started learning about it . I think I took less of a role with Brian because I felt like you're an adult Teaching me the stuff . I need to know that if I find you laying on the ground , this is how I'm going to treat you , which would actually be the same as going on a call as a paramedic and when to give you a sandwich and when to look for emergency medicines .
And when we were dating I did joke a lot about he would say , oh , my blood sugar is low , we need to go get ice cream , and sometimes I think that was just to get me to go out on another date .
Speaker 2Yeah , high five , brian , good job .
Speaker 4I know , yeah , I know we just ate dinner . But you want to go get ice cream or let's go get some candy bars . But after we got into the routine of things , it was always pretty much Brian managing his diabetes , except for me because I cooked Me , always trying to be that second voice of well , is this really what we should be eating ? Or let's try these healthier alternatives , but trying to do it in a gentle way , sometimes not , but just when it's your spouse , it feels like there's so much on the line because it's the father of your children and it's your husband and the last thing you want is your kids to grow up without a dad , or your kids to be your grandkids , to be cheated out of having an amazing grandpa .
Speaker 4So , whereas Brian comes from it like , this is my body . I'm going to nourish and take care of my body because it's mine . I come from it as , like you're , an awesome person and I don't want kids and grandkids to miss out on all the long years of your life . So I think that's a fine balance between two adults and giving him the space to manage his disease , but then also being supportive of . Sometimes it felt like we changed pumps in the beginning , more times than we like , bought new cars or new shoes , things like that and I felt like you know , if you feel like this is right for your diabetes management , then I'm going to support that and I'll go with you on the roller coasters of that .
Speaker 3Yeah .
Speaker 4Yeah . So that's kind of with Brian and with Grayson . It's a totally different experience and I think one of the reasons are we have six kids . Grayson's number three is right in the middle and so when Grayson went to get diagnosed I stayed at home and just had Brian go , thinking like you'll understand it , and then you come home and tell me what I need to do .
Speaker 4But then , thinking through that week while they were gone , I was able to visit a couple of times , but I wasn't spending the night , I wasn't talking to all the doctors . I think I went for one day where they did the diabetes education , but I actually couldn't be there super long no-transcript . When he came home after I thought about all that , I was thinking we can go two ways with this . We can go that Brian manages his diabetes all the time or that I take on that because Brian's already managing his own diabetes . And it came down to Brian travels a lot for work and at first , when I kind of stepped back out of the way as soon as Brian went out of town , I was calling him nonstop saying what do I need to do here ? What do I need to do here ?
Speaker 4And so that's when we kind of decided that because I'm the more I see more hours of Grayson in general , that I would be the one to oversee it with , obviously , brian being here , and I think every family is different with that We've had some families in our church that since Grayson's been diagnosed then their kids have been and so they've reached out and each family tends to manage it differently but for us that works well and then I would say , with me helping Grayson , we're always adjusting those fine lines of giving him a chance to make good decisions for his treatment and good decisions for food choices and exercise and letting him grow with that , as opposed to him turning 18 , cold turkey and leaving for college and then having to do the growing then .
Speaker 2So yeah , yeah . I love that because it is one thing you know , especially coming from the mother , coming from the parent . Like you have this , you know you , just you have this nurturing thought process and feeling for your own kid , right , and I know I feel that for my kids . Like I can't tell you how many times I've stayed awake at night thinking about like , oh God , they're sick , what's going on , oh God , I better test their blood sugar . It's so many times .
Speaker 2And the most interesting piece with all of this is that nurturing person needs to be able to take a step back and know that they're gonna be okay because you've been able to teach them the right things . You've been able to teach them what they need to know . You've been able to educate them , and I love the fact that you guys both have put yourself and the family in a position to succeed and be able to help one , Brian , be able to take on his management and continue to evolve and build that . But then also how you both have been able to take a step back and say , okay , this is my role and this is your role and this is how we're going to focus and work on this . It's awesome .
Speaker 4Right . We did find out that making clear boundaries for where we step in with Grayson is extremely helpful . So , because of the blessings or curse of a DEXCOM , mom and dad know his numbers at all times , Right , or most times . So we have some clear lines that we draw on . Well , if we see this number with an arrow down or two arrows down , or we will give you I usually , if he's at school , I'll give him 10 minutes to text me and say , hey , I'm fixing my blood sugar at the office , or to look and see if it's starting to go back up . And then we have some other boundaries .
Speaker 4He gets a little more grace when his blood sugar is high , depending on time of day , because it can take a long time to get his blood sugar to go back down . So just making those . The first year we didn't have to do that because he was homeschooling because of COVID . So Winky did go back to school that following fall it had been exactly a year and that's when we realized that we needed to put in some give him some grace on making choices to fix his blood blood sugar and then also just letting him know if you don't want to get a phone call from us . If you don't want the lady at the office , who is one of my friends , to be checking in on you in class . Here's the timeframe you have to make a decision on what you need to do and in the end , that has given him the chance to grow and make these decisions on his own and feel more confident in managing his own diabetes .
Speaker 2Yeah , I love that and the interesting piece is and I would love to hear more about the strategies that you guys have put together with him being at school , because I know a lot of parents struggle with that and the communication pathways back and forth . A lot of parents are trying to text through , send messages and communicate through text , and I'd be really interested to hear what your thoughts are about this and like , how have you guys have really been able to get to a place , both of you , where you are communicating in a very effective and efficient way ?
Speaker 4So I'll answer only because I am the one that handles most of the
school stuff . Brian's very involved in Grayson's school life , but the diabetes side it's usually me sending the emails and making the connections . But each year the school year starts out with him having a 504 plan , which most parents know to ask for . But with me working with other families , I have found out that not all schools offer that , or not all schools even tell the parents that that is an option . So we always review the 504 with the school district . We're very blessed to have a small school district and so it's almost picture perfect .
Speaker 4The principal has Grayson's phone connected to the wifi that only the teachers are allowed to use , so he has wifi throughout the entire building . And that is very important if you're depending on the Dexcom , especially if you were to have a younger child with that . And then , luckily , the guidance counselor actually happens to be a type one diabetic , and so the minute she heard that Grayson was a diabetic , she fully stepped in and said I will be here for you mentally , physically , treatment wise , like whatever you need , you let me know . But she's also really good at staying hands off unless otherwise asked . So she definitely holds good boundaries with that .
Speaker 4But after the 504 , each year prior to the start date of school , we meet with all of his teachers , the principal sets that up and we just have like one big group meeting . We go over all the signs and symptoms of if he's low . If he's high , we explain the 504 accommodations , which really there's not a ton but they are big . If he needs to leave to use the restroom in the middle of a test , most teachers might be like , well , no , you can wait till the end of the test . But I'm sure you know , having diabetes , if you have to use the restroom you have to go now . Especially if you're blood triggers , you spiked and then Loves , he said sometimes it never fails . He won't go low for days and the days are right in the middle of a math test . He's bottoming out .
Speaker 3Yeah .
Speaker 4That happened yesterday . He said it happened yesterday .
Speaker 2What so ?
Speaker 4what Grayson ?
Speaker 2what Grayson was ? Was it a math test ? Because ?
Speaker 3that would be .
Speaker 2that would be an ironic thing , because your mom was talking about math test and it was a math test . Yeah , that's hilarious .
Speaker 4Yeah , yeah . But so we're finding out that that meeting with those teachers it just starts the school year on a good foot . It it leaves everything open for questions If there's teachers that haven't had experience . We've tweaked it a little bit . We used to have a snack box in every class , but then we realized that that was actually what Grayson didn't want to do was draw attention to himself by eating in class .
Speaker 3Yeah .
Speaker 4So we figured out that he was more comfortable just walking down to the main office and they keep all of his supplies pump supplies and snacks all in one place and and , honestly , after looking back and the families that I've worked with moving forward on this , that seems like the better way to go , because a teacher can't keep their eye on a kid with blood sugar when they have 30 other students in the room .
Speaker 1Yeah .
Speaker 4But if he walks into the main office , there's either the counselor or the principal or the administrative assistant that sees him walk through the doors and they know why he walks through .
Speaker 2Yeah .
Speaker 4And so when we're talking about setting those boundaries with letting him treat , you know , if I see his numbers going down and they're not going back up within 10 or so minutes , I can send a quick text to her or an email and she'll say yes , I just saw Grayson , he's eating right now and then I don't have to interrupt Grayson treating himself and doing what he needs to do . But it just feels like we have a lot of support through the school district with . You know , sometimes I get tech from the counselor and said hey , just saw Grayson , he's in here getting a snack after gym class or whatever .
Speaker 2Yeah , now , when he goes in there to treat like , let's say , a low , is there a certain time that you guys have kind of said , okay , well , you just treated your low , so now you need to sit here and wait for so long , or is he's treated a low and he's going back to class ?
Speaker 4Do you want to answer that ?
Speaker 3It just kind of depends on how low I am .
Speaker 2If .
Speaker 3I'm like set E mid 70s , I'll normally just like eat something and then go back to class . But if I'm like 65 or below or like just like mid to high 60s or below , I'll normally sit in there for like 10 or 15 minutes and then go back just because I saved the hat . So going back and coming back in 10 minutes because my blood sugar guys will come back up .
Speaker 2Yeah , yeah , that makes sense .
Speaker 3But it really just depends on the situation .
Speaker 2Yeah , yeah , I just I think that's a really cool thing because I know a lot of parents might get a lot of value out of that understanding of like I'm so glad that you guys have that support at school and some parents , I don't think , have that support at school , and I think that's a really good , interesting thought process to kind of think about , like , are we setting boundaries for specific kids or specific situations ? That , hey , you need to be waiting this long so we can make sure what you just consumed or you just ate is actually doing what it's supposed to be doing ?
Speaker 4That's one of the questions . The first year that he came back to school . That was one of the questions the school district had for us , because we do not have a nurse at every school building , so that can be unsettling for something when it's just knowing that there's not an actual medical professional in the building . Luckily , we were able , like I said , to talk to the people that are in that office and they asked us do you want him staying here , do you want us to talk with him and make sure he's alert and to who he is and where he's at those kind of things . And some of the families that I've worked with that have younger kids that have been diagnosed . They set more hard parameters around that and they do ask , even if it's not a nurse . Like you know , if my fourth grader comes down because of sexcom is alarming and he knows he needs to eat a snack , please have someone keep him here until he can show his numbers are going back up .
Speaker 4And I think the key to all of that and what I've told other families is you have to be your child's advocate , because even though we have a great district at the minute I said diabetes in an email , they were responding back to me A lot of districts . They don't have that same sense of urgency . So if you are the advocate and you say this is what I need , this is what I need , this is what I'd like to be put in place and we wanna work as a team , you've seen , I've seen a lot of districts be very open to those ideas and most of them have said , even if they don't have a nurse , okay , who do you trust to us , to a point to watch your child until their blood sugar comes up . But it's just stepping out of your comfort zone and advocating for your child , for what they need .
Speaker 2Yeah , I like that .
Just for the listeners and the viewers , can you just describe what the 504 is , because I think a lot of parents might not even know what this is .
Speaker 4Oh sure . So with special education kids , they have what's called an IEP Individual Educational Plan . The 504 is a reduced needs same kind of thing . So a lot of people have heard of IEPs . The 504 is a legal document and it is the same across all districts . It can be written different , but the actual document is the same a collaboration of the principal , the teachers , that would be the teaching team .
Speaker 4So if they have more than one teacher and then oftentimes a school psychologist or a school nurse , and you all come together talk about what the need is of a student , that is above and beyond what a typical student would have in class . So diabetics they might need to leave in the middle of a test because they have low blood sugar . They might need to have . I know of some families where their kids need to have water all day long . Their blood sugars are in control , but they have thirst nonstop . So that can be on there . It can be . They can pause a test if their blood sugar is too high because their mental capacity starts to diminish if they hit , like that , 325 , 350 .
Speaker 4And so the school district goes through these accommodations . They also ask your whether it's a pediatrician or hopefully an endocrinologist to send information that they add into the plan and once everything is decided , the parent sign at the school district signs it and that becomes like a binding document that the school district has to abide by . And the best part of that that I try . I do a lot of IEPs and volunteer work and what I try to explain is this is not a negative thing at all . This is protecting you . This is protecting you as a parent , protecting your child , and it's also protecting the school district because it gives them very clear guidelines on what to do for your child . So it's one of the best ways you can add . And because we're in the state of Ohio , you can find more information on the Ohio Department of Education . They have a section on their website that talks about IEPs and 504s .
Speaker 2Lovely . Thank you so much for explaining that , because I think that that bit of information is going to be very valuable to a lot of parents . So thank you very much , grayson . What has been the biggest impact , impactful thing that you've learned for your diabetes , for your diabetes , that has allowed you to put whatever that is into your management style and helped you manage your diabetes in an impactful way .
Speaker 3Probably like noticing patterns in it . Like for me , whenever I'm going to play soccer , I'm going to practice , I'm going to a game , going outside to just shoot around a little bit . You need to recognize what your blood sugar is going to do when you go out to do those things . So for me , normally when I'm going like to an intense practice or a game , my adrenaline shoots up , which shoots up my blood sugar . So normally I have highs after intense practices or games . But when I'm just like outside , just kind of kicking a ball around , not really like really getting my adrenaline pumping , I normally go low . Like almost every time I go outside and I'm just shooting around and I'm just passing the ball , I'll come back in within like 20 minutes , 30 minutes , saying oh , I'm low , I need to ease . So when normally I practice it , it's the exact opposite .
Speaker 2Interesting . I think that's really cool that you've been able to identify that . How do you , how do you treat each situation ? How do you typically treat each , each situation ?
Speaker 3Um Well , when I'm high after like a game or practice , normally it'll come back down within like 30 minutes to anywhere from probably like 45 minutes to an hour . I very rarely take corrections if I'm high after a game or practice , because I know it's gonna come back down once the adrenaline wears out . Mm-hmm and , but with the lows I'll obviously do like the 1515 rule , but yeah .
Speaker 2Okay , do you , sarah ? Do you do anything like what ? What is the kind of the Process that you guys have in place during games if he's going high , do you have you guys like bumped up basal rates or done anything with , like any strategy that helps with the , the highs or lows during practice or games or anything ?
Speaker 4So we're still working with the endocrinology team on that Um , because so many kids they tell us that they typically lows during a game or a lot of physical activity . So we are still trying to figure out how we fight the highs um , but we I do remind them , like check your blood sugar , because with club soccer you have , you get there and you may have a 45 minute time frame of Low impact exercise , so just the kind that drops his blood sugar and then you switch over to playing the game and , like he said , his blood sugar shoots through the room . So , just being very sensitive to that , first 45 minutes in warm-up time and sometimes , if he's bordering on the line of if he's a hundred , he knows he needs to eat a 15 carb snack and not bolus for it in order to get him through those 45 minutes . Um , before it starts to go up . Yeah , we try to treat as lows with complex carbs as as much as we can .
Speaker 4I not I know a lot of . Even the endocrinology office is like , oh , do you want some fruit snacks or you want a juice box ? But with with Grayson we have found that , um , sugar tablets , juice boxes , things like that , they're not very stabilizing for his blood sugar , um , and we tend to be up and down when that happens . So , you know , I feel like my role is making sure the pantry is stocked with all the things that he can choose that are good for his blood sugar treatments , and then that gives him more freedom , like , oh , there's five different things that are Good for my blood sugar , but I can choose any of those five things . So it still stays in his hands . But just that gentle guidance . So this is what we mean . We did try the exercise mode on his pump .
Speaker 4Yeah for a little while , um , but so far we haven't seen a lot of success with it , because it focuses more on the lows .
Speaker 3Than the highs .
Speaker 4And we're still waiting for dexcom to make the range from his actual Meter on him to reach the receiver that's sitting by the sidelines because , in all honesty , not all of our kids love to wear their phone or the receiver Strap to them and some type of electric , you know Elastic band or something that Grayson just says it kind of gets in the way . Um , so that will be awesome . When it can , that signal can cover like an entire football field or soccer field . Yeah , um , because then I think the pump will be even more sensitive to doing those micro correct corrections .
Speaker 4Yeah throughout playing Instead of trying to solve the high at the very end .
Speaker 3Yeah .
Speaker 2Hmm , I'd also be interested in like as , working with the interconellogy office , I would be interested if , if they like are talking about maybe doing some temp basals or or increasing the that basals , are putting in temporary basals or something that are going to help maybe a little bit with those highs .
Speaker 4Um , so when we talked about that , if you really want to get technical on his pump , yeah um . So we talked about some of the temp basals and um the . We're thinking about working on that through the winter season , um through like some practices and things . But when you set those temp basals , um one , if your Receiver is not in connection with your transmitter Then it goes back to the . What's that basal called ? Um , just the regular manual basal yeah .
Speaker 4So it reverts back if it can't get readings yeah um , and then we also , we're hesitant , like in the middle of an actual game . What happens if that's too high ? And then it drops them really low ? Um , so that is our next step Interesting but it's definitely gonna be a A long process instead of just like oh , let's , yeah , pump up that basil and see if he drops low yeah because , that , yeah , yeah , he's actually thinking about it .
Speaker 2It's like that basal rate might be good this time but it might not be good next time , all depending on how much food he has on board , what insulin's on board , like so many different factors are going to go into that . It's interesting it , grayson , you're on the omnipot or the tandem .
Speaker 4Great .
Speaker 2The omnipot . The omnipot . Okay , yeah , I thought so . I thought so . I remember you being on . Um , yeah , so do you like to hang out in automated mode or manual mode , or a little bit of both ? Most of the time I'm in auto mode .
Speaker 3Yeah .
Speaker 2When I first got it , I I was like living in automated mode and now I can't stand it because , because it has that Cutoff of 110 , so like if you're , if your blood sugar is trending down at all , it cuts you off and I like to be more tight , so I want to be down at 100 , at like a 90 . So now that I like am constantly on manual mode , I increased all the amount of basals I get , so now I have 0.8 to 0.8 , 0.8 to 0.8 , 0.5 Every three hours . So I literally have like six or seven basals programmed into my pump and it's like it's worked perfectly , especially in the evenings , at night . So it's like it's . It's really interesting , as you like , think about like how one person manages their diabetes to the next person managing their diabetes . Um , yeah , I didn't . I couldn't stand it . Like it would always cut me off and then like I'd always be hovering at that like 140 130 time , instead of being down at like 110 190 .
Speaker 4I think that's the good thing about Grayson and brian's personality is they are A little more patient with numbers and correction and they're a little more relaxed . Um , we always joke that it's good that Grayson got the diabetes in our family instead of me or my daughter . Um , because I'm a little bit more patient with my family Instead of me or my daughter . Um , because we may not be able to function in life because we would be so worried about that perfect 100 all the time .
Speaker 4Yeah so , um , what sometimes is not always a blessing , is definitely a blessing with their personality in this case , because , um , they're able to be patient and let let their body do what it's supposed to , let the pump do what it's supposed to .
Speaker 2Yeah , and I , I mean I do like the automated mode because this is so intuitive and it's it's such a a learning Machine and the more you more you use it , the more it learns what you're , what your you know , trends are , and ticks are what just starts learning more about you . Um , the the really interesting thing is is when they Uh , I think omni pod is releasing either end of this year or beginning of next year with the g7 and and how that's going to work with the omni pod and the omni pod 5 , and that'll be really interesting .
Hopefully has an iOS application too .
Speaker 2Yeah , yeah , and actually I think they're getting ready to release that as well , so which will be cool .
Speaker 4We have some friends that have the seven already because they do shots . Um , but just from what they talk about , it's absolutely amazing . So I can't imagine when they finally release it to work with the pump , like when it's all working as one . It should be pretty awesome .
Speaker 3Yeah .
Speaker 2Yeah , grace , have you tried the g7 yet ? I haven't . No , I tried it and , uh , I wasn't impressed , but again , I only wore it for 10 days . I only wore it once . It was only for 10 days , and then I might have had a bad spot , might I ? It was just . There was one time it was off from the g6 by 100 milligrams per deciliter .
Speaker 2So , I mean again , but it's probably a bad spot , like you know , um but uh but there . But then also during the 10 days there was times when it was like very there , was very tight and working the right way . So but it's uh , it's an interesting piece of technology because everyone loves the dexcom , everyone loves the abit libre 3 , we love the cjm , cgms . But I always tell people is like , if you don't believe that number or we're questioning that number at all , you need to test your blood sugar , because it's definitely not to the point where it's 100 accurate yet so right , yeah , I think I was a little bit hesitant when we switched , because he originally was on metronic and man .
Speaker 4We lost a lot of sleep with with that system because you have to calibrate it every 12 hours . So , um , it just felt like there it was not tight with the readings or anything else . Um , it works . For some people it's fine , but I was hesitant because the dexcom was saying like no , you don't have to Check your blood sugar every 12 hours with a finger prick .
Speaker 1Yeah .
Speaker 4I still encouraged that for quite a while , until we got comfortable with it .
Speaker 2Yeah , the the difference between the g5 and the g6 was insane . Because of g5 you had to calibrate a lot . You had to calibrate every I think it was 12 hours , maybe it was , I can't remember it so long ago . But then I went to the g6 and I'm like this is amazing , you don't ever have to finger prick . Are you kidding me ? Um , no , it was the g5 . You had to finger prick to calibrate it at the very beginning , after the warm-up time , and then the g6 came out and there was no more finger pricks . That was their whole thing . So technology is amazing . I'm sorry , brian , you didn't have that when you first diagnosed me .
Speaker 4Yeah , I wish .
Speaker 2Are you using technology now , though , brian ?
Speaker 1Yeah , uh , we're actually . I mean um grace and I are using the same , so dexcom and homely pod , which makes Everything a lot easier .
Speaker 2Yeah , that's cool , that's good . How are you , how are you guys on supplies ? Like , are you guys ? I mean , obviously your insurance is probably pretty , pretty good Um , do , being in the field that you guys are in and you guys are , does it you guys find it very easy to get your supplies um , I mean we've been fortunate overall .
Speaker 1I think we had some changes with our insurance this past year . That kind of Um Changed some of that a little bit prior , prior to this year or last year this is the second year Um , all any of the prevent it . So it was all covered , like without copays or anything , wow , all of our supplies , which was crazy . And then the plan switched . So we went to you know , the plan that I was used to at a previous employer . So we just had to get back in the group of not having everything covered , about having to worry about copays or deductibles and all that stuff . I mean at this point I mean it is what it is , so we haven't gotten .
Speaker 1I know I had an issue for a short period when I switched to the Omnipod because Grayson and I were both on the Metronik pump which has a 300 unit reservoir . So I was having a problem with the Omnipods just personally because I needed that 300 units to get the full three days out of the pod . So there were some back and forth with insurance and getting them to give me more pods , so that you know all that worked out . And then ultimately , you know , kind of coming back to having an endocrinologist and a doctor that you can talk to and work through the issues with you know , they kind of asked me , like , have you ever thought about U-200 insulin ?
Speaker 1And again , it's like I didn't know what that was Like . What are you talking about ? It's like , well , I mean it's , you know , double the concentration , essentially , so you know we can make the pods work the way that the Omnipod supposed to function with the same quantity of liquid . I mean , that was really the only issue that I've had , you know , from switching and I love the I don't know I'm sure Grace probably feels the same way Like the no tubes and all that stuff . Like that was a big game changer for me .
Speaker 3Yeah .
Speaker 1It seemed like , especially as a firefighter , like the tubing was always getting caught on something or trying to figure out . You know what I was going to do with it , yeah , so but yeah , I didn't think I was on , I was on tandem .
Speaker 2I was on tandem in their closed-web system with the G6 . And I didn't think that it would be a big deal until I switched , like not having the tube , and it's like holy moly , it is totally different that is absolutely Kind of crazy .
Speaker 1So I was really worried when we first switched because that pod seemed so large when you first you know , just comparative to what you know , your infusion sites with the other pumps . But I think it took me a couple of days and it's like , oh yeah , that's you know . Not getting caught on stuff . Definitely worth yeah , not getting caught on stuff . Like you know , walk around or find a place to clip . You know , clip the pump and the tube on my belt .
Speaker 2Yeah .
Speaker 1Just yeah , Disconnecting all the time , yeah disconnecting the shower and all the just yeah .
Speaker 2I think there's a rumor a year ago maybe it was a couple of years ago that tandem is working on their version of the Omnipod , where I think they were this was two years ago , but they were gonna call it the sport , where it was not gonna have a tube . I was still waiting for that thing . Oh so , but yeah , we did talk about that we now .
Speaker 4We say who would pick one with a tube when you can't have a tube Like what would be the reason ?
Speaker 2So but , like you said , I think it's comfortability yeah .
Speaker 4They didn't have one .
Speaker 2Yeah , I think it's comfortability . I mean I like the tandem and the software is like it's awesome . I mean the tandem software is the first generation closed loop , like the OS for the Omnipod is different than the OS for the tandem , but I interviewed one of the ladies . That was like the very first . I think it was back from Arizona State when she was in grad school . She was like part of the whole beginning of the closed loop technology research . That was such a fascinating conversation with tandem and we just we weren't able to release the episode but it was such an incredible conversation just hearing about the evolution of that type of technology , of this closed loop system , that we now feel like we can't live without .
Speaker 3Yeah .
Speaker 2So
cool . So as we wrap up here , guys , as we wrap up , I would love to ask each of you one more question , just kind of giving some insight of your guys' experience . What are one to three things that you feel has helped you in your role in the family to be able to either help Grayson , help Brian , Sarah ? What is one to three things that you think that could be impactful for a listener or a viewer to kind of hear , that could kind of help them if they're struggling with the condition ? I'll go first because it's easier .
Speaker 1And I'll give you one only because we've kind of talked about it already . But you know , like Sarah said , having her kind of be to leave on Grayson's care , so especially if you're in a family that has more than one diabetic . So you know , like I said , we joke with developing all the bad habits over the years and things like that . You know I want in particular that I think about is just bolusing for males . Just because of being in the fire service I've never bolused before a meal because I never knew what I was going to get interrupted so I couldn't finish the meal , like that kind of stuff . And then just with the educational piece of things you know , most of the time , especially when we were in the hospital with Grayson , you know the educators would come out and talk and I know all this . I don't want to say I know everything , but I know a lot of the information that they're going over . So I tend to assume that Grayson knew it too , and then I was less likely to listen for new information .
Speaker 1So you know I would get home and Sarah would ask me questions and I'd ask well , I don't know , you know , and so I would just say you know , with our family , especially having more than one diabetic in the family or , you know , if you're one of the parents as a diabetic , you know having the other one may be kind of the lead with the child . You know to me has helped us a lot . That's awesome . So I can just kind of offer support or blank stares to Sarah when she asks me a question that I don't know the answer to . A blank stare . I love that , yeah .
Speaker 2That's great , grayson . What about you ? That one , that one . What about you , grayson ? What about you , buddy ?
Speaker 3I'd say like , just be patient , like with really everything . Like if you're high , you're not going to go down in five minutes , you're not going to go from 300 to like 90 to 105 minutes , or I've never seen that happen , I doubt .
Speaker 2Mathematically it's not possible .
Speaker 3Just yeah , and like same thing if you're low , like you're not going to go up the second you eat something , unless you like borderline low , like barely even considered low , like 75 . Like you're not going to see the numbers change immediately from being low to high or high , dropping back down and like and it's not only with blood sugars , like , just in general , if people have questions like about it , like just answer them , Like , and most of the time they're not being rude about it and they'll just be curious . So the best thing is just answer them to the best of your ability and if they have any more and if you don't know the answer , just straight up say you don't know .
Speaker 2Like if you don't know , you don't know .
Speaker 3There's nothing you can do about it .
Speaker 2Yeah , but it's a good opportunity for you to go learn about it , though , if you don't know . Yeah , I love that man . Good Sarah , what about you ?
Speaker 4I think , as a wife , don't overstep your boundaries and remember that your husband is an adult and your husband has lived with it for quite a while . Or , if it's a new diagnosis , they're still learning . Brian learns , like he said , new stuff all the time , especially when I come back from the end the chronologist and I'm telling him about things and he's like well , I have not heard about that . So , like Grayson said , being patient with your spouse if they have diabetes , and then with your child I feel like this applies to all ages . But give them credit for learning on their own , and I think I do .
Speaker 4I didn't give Grayson enough credit in the beginning to really own his disease and own his treatment . I just wanted to do it all for him to make sure his numbers were , that DEXCOM was straight line all the time and in the end I think that works against you as a parent and it works definitely against the child . So I would say , just give them credit . They're smarter than you think and they're more capable than society tells them they are . So when we walk in a classroom full of teachers , I can fully be confident to tell them that Grayson is the lead manager of his diabetes and Brian and I are there as support and resources and to check in , and I never imagined before this that I would ever be able to say my kid is 13 and he manages shots , and he even is . He tells us when he needs refills . Hey mom , my insulin's getting low , I need a refill . I think we just don't give kids enough credit for what they're capable of .
Speaker 2Yeah , I love that . That is amazing , that's awesome .
Speaker 1You're still smarter than we are .
Speaker 2Yeah , that's awesome . Well , the guys , thank you so much for doing this . This was just an absolute pleasure to say . Meet you Brian , meet you Grayson . It was incredible watching you for an entire week . You know I didn't get to spend a lot of time with you , but hopefully in the near future I will be able to . I'll see you next summer , for sure , but yeah , this was just fabulous . Thank you , guys , and I really appreciate you guys coming on and being open and giving some really good information to a lot of people that are struggling out there .
Speaker 4Well , thank you very much for having us . Thank you .
Speaker 2Thank you . Yeah , absolutely , guys . Thank you so much and we'll see everyone next time .
Speaker 4All right , thanks . Thanks , see'll , he next week'll see you next week , thanks everyone .
Speaker 1BYE BYYY�� Boxland Media Think Big .