I know that it’s been awhile since I’ve posted cute pictures of amazing dogs. And I am hoping to get a chance to do that this weekend. But we have a type 1 daughter that is getting older. More independent. Seeking more responsibility. Thinking she knows everything. And as a parent, letting go is already hard enough. If you have a child that has a disease like type 1 diabetes, it is even harder. And sometimes scarey as hell.

For those of you that follow along on our Facebook page, I initially posted this story last night. But I wanted to expand a little bit. There were some questions that came up. Some judgements were made. There was also a lot of agreement. I felt a little raw and exposed afterwards. So why did I post the story? Because our life isn’t just perfect numbers and gorgeous dogs. Day to day life isn’t easy. There is no formula. Sometimes things happen. Scarey things. And it is part of our story, our journey through the murky world of caring for a child with what can be a life threatening disease. And I don’t EVER want to give anyone the impression that our status quo is acceptable. We need a cure. This disease is serious. It requires constant vigilance. There is no time off. We need a cure. Here is the story. Hot on the heels of last weeks “how involved are parents” topic, when I came home from work yesterday, my wife told me that Stella was 39 with 2.45 units of IOB! That is dangerously low, and with a lot of insulin still working. We asked Stella what happened, and she said she didn’t know. I had just made an adjustment to her basal program the day before, as we were already running low after school due to PE being the last class of the day.

I was concerned that I had made a mistake when changing the settings, so I asked to see her pump. I went through the basal program and all looked fine. I asked Stella again if she knew what happened, and again, I heard “I don’t know”. Normally, if she were to sneak food, she would have an unexplained high, so I was confused. Perhaps we were having a pump issue? So I went into the history settings to look. At 1:31 there was a bolus of 1.80. At 1:32 there was a bolus of 1.55. And then another bolus of 1.55. Almost 5 units of insulin in a minute, in 3 separate bolus’! I asked again, what happened? At this point she knew she was busted. Turns out a friend at school gave her a granola bar. This was 1 hour after lunch. She didn’t check to see if she had any IOB, but knew she was high by looking at her CGM. We use an Animas Ping pump, and it has a One Touch meter that is like a remote control. We can check her BS with the meter, and then add in carbs and the meter will figure out a correction if required, deal with insulin on board, and tell us how much insulin we should be using. It basically does all the math. But we don’t send that meter to school. The school has a standard meter, and Stella also has a standard meter with her at all times. So she had no idea how much IOB she had. She did the first bolus to correct the high. The second bolus was to cover the carbs in the bar. Then she thought she made a mistake and she cancelled the bolus, so she did it again. But both went through. Scary.

We want her to be able to handle her disease. We want her to understand what she is doing. And she is learning. Constantly. And her reasoning for why she did what she did was sound. But she didn’t count on the IOB. I also don’t know how she came up with the amount of insulin for her carbs. After telling her what COULD have happened, I am hoping she was scared enough to realize what a bad idea that was. That she can’t do things like that without knowing all the info. And we will be having a discussion with her teacher tomorrow to let the kids know that they can’t sneak her food.

Now after posting that, I got many responses. Most were positive. A few were questioning and judgmental. Of course, those are the ones that stick with you. I mentioned that we would speak to her teacher about children sneaking and sharing food. Someone accused me of “parading her around like a freak show”. That hurt, and was completely uncalled for. You see, it ABSOLUTELY is dangerous. And we aren’t approaching this like “CHILDREN, YOU CAN”T SHARE FOOD WITH STELLA BECAUSE SHE IS GOING TO DIE!!!!”. It will be more like, “children, sharing food with others can be dangerous. Some children may have an allergy to certain foods, some children may have an issue with gluten, some children could be lactose intolerant, and some children may need to take medicine every time they eat”

I don’t have any issues at all with that. I don’t ever want to single my daughter out and label her. Everything we do, sometimes it feels like our whole focus, is to make her feel as normal as everyone else.

We also had someone say that we were depriving her of food. Creating food issues with her. Causing her mental issues she would have to deal with. Really? We don’t deprive her of anything, and this was certainly not an issue with her eating a granola bar. But you don’t have a clue about type 1. We let her eat anything she wants, in moderation, just like every other responsible parent does. We have cupcakes and ice cream. We go out for pizza on occasion. We eat In N Out burgers now and again. We have cookies. But it is all in moderation. And IF IT HAS CARBS IN IT, SHE NEEDS INSULIN! The PROPER amount of insulin. Not just some number she pulled out of the sky. If she is going to sneak food, it is almost preferable to not bolus than to over bolus.

We are heading into the teen years. Perhaps faster than I’d like. And there will be mistakes. We will have problems. There may be rebellion. There are going to be lots of learning opportunities. This is one. I hope she understands why this is dangerous. We didn’t sugarcoat it. She needs to know. Insulin is one of the few life saving medicines, that if given incorrectly, can kill you. This isn’t play time. We are teaching her. She is learning. There will be hurdles. And we will get over them as they pop up. I am not going to handle them all well. I will make mistakes. But so did you. And your parents. But when it comes to keeping my daughter healthy and alive, there is no compromise.

I left the comments up, all of them. If you want to go read them, they are on the Facebook page. But I would love to hear your thoughts here.

Edit: I don’t want anyone getting hung up on the fact that she didn’t have the remote meter that easily shows IOB. All that data is in her pump, and she knows how to find it. The frustrating thing that happened yesterday was that she did this bolus without even testing. Her reasoning was sound. She knew she was having carbs. She knew her BG was a little high. She bolused and corrected. But she didn’t test. And she didn’t use accurate numbers. As a matter of fact, I don’t even know how she came up with those numbers. THAT is the issue.

Team Blackdogsrule

 

 

primark

Related Posts Plugin for WordPress, Blogger...

13 Comments

  1. Frank, I read your post on FB and also read the “freak” comment and replied to that on FB. I totally agree with your plan of action. I would do the same exact thing if one of my T1 children had the experience that Stella just went through. Our number one responsibility as parents to these children is to look out for their day-to-day safety and teach lessons about management along the way. We’ve gotten “the look” from people when out in public when we don’t allow our children to have something to eat right then and there. Like you, we allow our children to have almost everything. That said, sometime if blood sugars are running high, it may not be the best time to indulge in that chocolate fudge sundae that they’re craving. In that case, we’ll say that they can’t have it (whatever it may be) at that exact moment, but that they can have it at a later time. My son adores Skittles, but we reserve them for when he’s having a low. He’s happy and we’re not terrible parents. My daughter is 11 and does a lot of her food boluses herself. We’ve been fortunate not to have an incident similar to your experience yesterday . . . so far. It’s a hard age to begin with and to have T1 thrown into the mix, just makes it that much harder. From what I’ve read on your FB page and your blog, Stella couldn’t have asked for more caring and concerned parents. Keep plugging along. I think Stella is in good hands!

    • Yes Jonna, you are absolutely right! Sometimes, walking through the mall with a 250 BS, a churro isn’t the appropriate snack. But we allow it often enough, when the BS situation allows for it, so that it shouldn’t be an issue. Thanks for the support!

  2. Frank: I admire you for sharing all aspects of life with Type 1 and your DADS. It’s so easy to share the ‘good’ stuff when the meter reading is ‘on the money’ when a DAD alerts on a BS that’s right at 80 or right at 175 (or whatever a set reward low number or high number is) but it’s hard to share the aspects that aren’t so perfect and celebratory.

    This morning I received an email from Austin’s school nurse and the contents of it made me think of your post from last night. She was reporting that Austin had just called her with a BS of 434. She questioned him more because a little over an hour ago he had called and reported it was 140. When she asked Austin about it he said ‘oh, it was 280 not 140.’ I will be talking with Austin tonight about what happened and the importance of providing accurate information to the nurse.

  3. The one thing I’ve learned as a parent of a T1 is to never, never, NEVER judge other parents of T1s. We all learn from each other, but at the end of the day, every kid – this bears repeating – EVERY kid is different. They respond differently to bolus and to carbs, to exercise, to stress. Overlaying that is the fact that kids will be going through tremendous physical changes which will upset any equilibrium you might think you’ve found. I practically lived at my son’s HS, either bringing more supplies, or more juice boxes, or to pick him up and bring him home because he had been high for too long.

  4. Frank, first let me say how grateful as a family that we are for you! Your transparency is so helpful to us. We are the parents of an 11 year old son with type 1 just dxd 18 months ago so it is in many ways still new and fresh and raw. The “parade her like a freak” comment enraged me! We not only deal with type 1 but severe life threatening food allergies and for the record we would have handled it the exact same way you plan to.

    Let me also say we share your sentiments about growing into teenhood and their growing responsibility with this disease. It SCARES THE HELL out of us!!! But what I want you to know is how much we value you and your family and your experiences because it opens doors for discussion. I took the opportunity to lay out this scene for our son and asked what he would do. Happily he got it “right” in theory but I pray in real life he’d really get it right!!

    We are real, sometimes too real with him about the consequences of his actions of using or not using the tools we put in place for him. We preach honest and accurate information to him because he knows without it he not we or the school nurse can properly care for him!!

    Will he mess up, yes! Heck I’ve forgotten to bolus him twice since starting to pump!!! We take the responsibility off him at home because he asked us to. We own the mistake, learn and move on period. Like Dave said there is no room for judgment in the type 1 world, ever! Shame on the one that did it!! We should learn from and support each other!!!

    The issue here for me isn’t the food, it’s the using the tools put in place to remain safe and realizing that we all make mistakes just own them and learn because sadly with this disease we may not be afforded a second chance.

    You keep on keeping it real Frank!!!!!

  5. I’m sorry this happened yesterday, but if it was a teaching moment that will save her life (or the life of another child in her class) in those times in the future when you won’t be around to check her numbers then… I would say it was a good situation in some ways to have. Both you and Laurie were amazing parents before Stella’s diagnosis, so now your continued fantastic support and care of her and Dash do not surprise me one bit….and although in no way can I even come close to understanding what it’s like to care for a child with Diabetes, as a parent I know that everyday I make choices and decisions that I believe are in the best interest of MY children and not everyone will agree with them. I’m big on being honest with my children, teachable moments and if it will keep my babies safe—making others uncomfortable. I don’t see you often enough to give u a hug but know I send one everyday…love you all and remember what I tell my children….”mean, hateful, or insensitive people that hurt others through words or actions live little miserable lives, it has nothing to do with you what so ever”. <3 M.

  6. You are handling it right. Period. I am Type 1 of 32 years. Before I was allowed to have a pump (I was too out of control-haha-for one) I snuck food. But it was not because of how my mother handled me and my management. Teen age years are hard, and it’s just starting for you. I Thank God everyday that I am here today with two healthy children. My pump have me that control. And I STILL don’t always do everything correctly. That’s why I too, have a pump, CGM, and a DAD. You guys rock.

  7. Frank, As T1 parents, we do the very best that we can everyday to help manage T1 and to teach how to properly manage it- Its a constant struggle to think like a pancreas and no matter how hard we try we are nowhere near perfect- It sucks that we have to live in constant fear and it sucks worse that we have to constantly explain the realities of our fears to our kids that are are wanting to gain the independence that they desire- Its hard to cut them loose knowing the ramifications of what if… Ive learned to choose my battles- People that don’t live in our world don’t get that we can’t just ” teach them a lesson” by allowing them to learn from their mistakes.. T1 as we know can quickly turn deadly, there are NO second chances with this disease- Since diagnosis, I still get under Zakks skin at times especially when he has been running high. Fortunately with his constant exposure to the awesome T1 families that we are working with and have met during this journey, he witnesses the same care that we still put forth for him and he knows that the fear and concerns that we T1 parents have for our kids is genuine and our actions are all done for the love of our kids- So, as a T1 Mom, I say pick your battles, forget those that are rude and you keep on doing EXACTLY what your doin.. Stella knows that you will always have her back and that you have taught her well and that you have done the best that you could. What more could anyone do‚ĶChin up! You are an inspiration to us all and YOU Rock!!!

  8. I haven’t read all the comments and am coming on late but my question is does she understand the bolus/carb ratio? My question, like yours, is how did she get her numbers? The rest is well…in my opinion, normal tween/teenage behavior. She is making a step toward independence as a teenager AND as a T1d. Y’all are great parents and you are doing just fine, don’t sweat it. You don’t have to explain yourself to the negatives out there, they don’t have a clue what we as T1 parents deal with everyday and they never will because they are too busy with their own self righteous judgements. It’s hard to let go because you realize the realities of this disease which I am not sure at Stella’s age or my son’s age (14) they can fully understand and accept those realities. So we are always there, in the background, monitoring and checking. My son is much more independent with his diabetes care, but he was only diagnosed a year ago at 13 and was in on all of the training sessions and encouraged by the professionals to do it on his own but I am still always there checking. He gets so annoyed with me for checking during the night….why, because he doesn’t really get it yet, he will though….unfortunately. So don’t worry about what others say and know that you are helping other families out there with T1.

  9. Hi Frank, my name is Annie Lewis. I live in Salt Lake City and have 4 children (ages 12, 10, 7, & 2). My 2 year old daughter was diagnosed with T1 Diabetes on December 12, 2013 (good times). My husband and I heard about Diabetes Alert Dogs shortly after her diagnosis and of course started researching them right away. Your blog has been absolutely invaluable to us. I don’t even know how to tell you how thankful I am to have found the kind of information you provide here. It has given us so much hope. We made the decision to send our 6 month old English Golden Retriever named Lottie away to begin her training. It’s going to be a long process and it sure as hell isn’t cheap, but we feel like having a DAD to help us will be a game changer. I have to admit, I didn’t know squat about T1 Diabetes before December. It’s been crazy difficult to wrap my head around how different our lives are going to be trying to manage a toddler with diabetes. And then a child. And then a pre-teen. And then a teenager (if I haven’t flung myself off a tall building by then). I appreciate very much how candid you are about living with a T1 Diabetic child. I can’t imaging judging another parent of a child with T1 diabetes. This crap is hard enough as it is. So thank you for keeping it real. Thank you for sharing Stella’s and your family’s T1 Diabetes journey. Us rookies need more people like you.

  10. Frank!! Ahhh I just want to jump up and down and clap. This exact thing happened to us! I flipped. If I don’t make every carb count, if I don’t stress it’s a HUGE DEAL, If I don’t teach her that this is about her life not a granola bar….why would she think it’s serious? Well written again and thanks for putting yourself out there for all of us.

Speak!