How do you explain the danger of highs?

This turned into a longer post than I intended, but my basic question is: does anyone have advice on how to explain the danger of highs to a young child?

Background: We've had a few recent incidents where my daughter accepted food, including carb-y things like fruit chews, from well-meaning adults at parties/family events without coming to us for a poke and bolus, and we've had to clean up the spike afterward. She does ask if the food is GF, but she tells us that she "forgets" about diabetes. She's had T1D for four years, but this has only recently become a problem now that she's a first grader feeling her oats. I sat down with her for a Big Talk last night about how this could cause high bgs. While we were talking, I realized that she has no idea WHY we don't want her to go high. She knows that lows are bad because they sometimes make her feel crummy and because she might have to have glucagon. But she seemed pretty shocked when I told her that highs can make her "sick." I pulled back and didn't get specific about exactly how high bgs can hurt her over many years, because I honestly was a little surprised that she genuinely didn't know that highs were any big deal (after all the hours we've spent reading her books about T1d!)

Obviously we have a lot of issues here -- our daughter wants more independence but doesn't have always have the maturity to say "hold on a sec" when offered food or when she wants to eat something; and every time we leave the house, someone seems to be offering her food. I'd like to be able to let her out of my sight for a few minutes, and of course we can try to continue to educate other adults, make bolusing quicker and more discreet, etc. But the bigger issue is that it worries me that she doesn't know any of the "why" of needing to bolus for everything she eats -- she's totally complacent about being high. I don't want to scare her or tell her more than she's ready for, but I do want her to appreciate that there is in fact a reason we don't want her to be high. Anyone else confronted this??

 

This is a few years off for us but would love to see replies. I tend to be in the "truth is always best" camp but know there are situations where the unvarnished truth may be too much, so am curious how others deal with this and what the outcome is.

 

I need a better explanation too. On the way out the door my husband and I both thought the other had covered breakfast. As we corrected the resulting spike 45 min later, my son asked me the same question, "But highs aren't as big of a deal as lows right?" In the moment, I said, "Well it's not good for your kidneys and blood vessels." He knows DKA is bad, but for short term highs.......what is the best explanation??

 

I know I am likely not strict enough about carbs or treats that come about unexpectedly. Right or wrong, I quite often let it go and just correct. I feel so badly for these little folk that have to deal with this 24/7 and if they "forget" they have diabetes periodically, that's okay by me. I have never been in favour of making kids pass on treats others are enjoying. My DD is 14 now and sometimes forgets to bolus for a snack because she's busy at school or doing something with her friends. I want her to know she can eat anything others do as long as we bolus and/or correct. As long as it doesn't become a habit, I don't make a big deal about the odd unbolused treat.

 

When my daughter was first diagnosed, lows got me very jumpy, and highs, which took longer to bring down used to really stress me out.

A well trusted diabetes educator told me that short highs is nothing to be stressed out about.

He said just correct with insulin and wait an hour or two patiently for the bg to come down. He said short term highs does not have impact on long term health. Just make sure there is insulin in the body, so there is no ketone. He also said to not run high all the time, which will result in high A1C, which will impact long term health.

I don't get stressed out with high BGs anymore. But I still don't like them, and will quickly give correction (or check pod to make sure that it is delivering insulin okay).

 

Your post makes me feel much better. After three years, lows still make me anxious and stubborn highs annoy me. The advice of your diabetic educator is very wise.

 

My daughter feels pretty crappy when she's high- cranky, thirsty, sometimes bellyache/ headache. So we have mostly framed it as a short term thing- if you forget to give yourself some insulin for X,Y,or Z, then you are going to end up feeling yucky and its going to take awhile to come down and may ruin (whatever fun thing we might be doing) for you.

 

She's 6. I'm pretty sure she also doesn't understand the life long implications of proper teeth brushing, getting enough sleep, and exercise.

Sounds like she's behaving in a completely age appropriate manner. At this point in her life, it's not really her job to worry about diabetes. It's yours. You sort of do the same thing that you do with brushing her teeth. You stand there, and you make sure it gets done. You don't scare her with "your teeth are going to fall out" - at least I hope not, because fear is the worlds worst motivator.

 

I agree about fear being a poor motivator. However, consequences are a concept that most children understand. At age 6 and up, it's okay to start instructing what the natural consequences can be if you don't do x,y,z. Children are forgetful and irresponsible. It's our job to teach them to be those things as they grow. And, they are capable of much more than we give them credit for. Just a balance there and that was what the OP is asking and I'm still seeking too.......thanks for all the great responses.

 

I agree with you, partially. I think it's perfectly ok to say to a young child "you need to do this, or else you'll have this immediate consequence", even with diabetes tasks. I think it's totally ok to have consequences for not following diabetes tasks just like anything else. But I don't think that a 6 year old can internalize a consequence that happens 20 years from now.
I do think the OP is asking how to make her child understand the later consequences. But I just don't think, at this age, it's something that can happen, or should happen. At 6, our job is to make life as normal as possible. If that makes extra work for us, then that's what we do. And 99.9% of diabetes at the age of 6 is extra work for us. Not them. Diabetes is just one thing in a long line of things we still have to do for our kids at age 6 because they simply aren't ready to handle it.

I look at the parents who have teens and older, those who have gone through those years without a ton of rebellion, without a ton of issues, and I see what they did. They did most of the work. They did the worrying. They did the staying up nights. They chased the child around. They didn't scare their kids into thinking they'd lose a foot if they ate an extra cupcake. They did say "what's your blood sugar?" and "thanks for telling me" Did they all have perfect a1c? nope. But did they end up with well adjusted kids? Absolutely. That's my goal.

 

I agree with you wholeheartedly.

 

I agree with all of this.......I've never met a parent that tells their child they will lose sight, limbs, etc. but maybe I just haven't run into them yet. Yikes. My son takes a lot of responsibility for smaller aspects of diabetes care on a daily basis. I don't think most boys would start doing their own fingerpricks 3 days after diagnosis (age 6). We tend to treat diabetes like any other responsibility though (with much grace of course). That means, plugging in his devices at night if they need to charge, keeping his sugar pouch on him, etc. Doing a bolus for food is still under our supervision, but he works the pump completely with our go ahead to bolus carbs. Unlike other responsibilities though, we don't discipline if he forgets things related to diabetes......I don't have the heart for it. However, we did tell him that if he wants more freedom (overnights, camps, clubs, etc.) that we have to see a consistent pattern of being able to do those things more independently.......that is a good motivator for him.

 

Thanks for your thoughts. But I want to clarify that that really wasn't my question -- I'm asking is how to get through to my daughter that there's a REASON that we have to bolus for all food. Otherwise she's going to have to stay attached to my hip the same way she did as a toddler, because she currently thinks that our concern for covering food with insulin is a curious adult whim that can easily be cleaned up whenever we get around to figuring it out, if we do. I will bolus her for anything she wants to eat, but the problem is that she seems to think the bolus part is optional and she'll eat pretty much anything on offer (as long as she knows it's GF, which is awesome!!) She is not a kid who takes "because I said so" as a satisfactory response -- and it's that independent streak that I'm trying to honor! I'm absolutely not trying to avoid extra parental work.

This thread has helped me to hear that other parents with younger kids are struggling with the same issues. It just really brought me up short to discover last weekend that she had no idea why we do all this work. I am thinking hard about concrete and near-term explanations I can give her about why she needs insulin, stuff that I'm less worried about but that might resonate with her like keeping her in the best shape for things she loves like soccer and gymnastics. She has had to go in for fluids when suffering ketones before, and I think it's fine to remind her of that unpleasantness -- I'm not trying to frighten her but I do think it's only fair that she be aware of possible consequences (just like, yes, I do remind my four year old of the cavity that he got because he wouldn't let us brush his teeth!)

 

Could you explain it with a metaphor about the sugar? Perhaps show her a glass of water with sugar, and say that when blood has too much sugar in it, it's sticky and thick and coats everything else in the body. Then things in the body don't work like they should. Occasionally, the body can eventually clean off all that extra sugar, but if it happens too often then the body has trouble cleaning off the sticky mess and the body can be hurt long term.

Really out of my depth here because I don't know how much 6-year-olds understand, but I feel like some sort of explanation is in order, like you say.

Our non-D son knows that even though he hates it, he has to brush his teeth. We do describe the "furry sweater of germs" that will stick on his teeth if he doesn't brush, and reference "stinky dragon breath" and even describe "cavities." Our goal is not to scare him but kids do need to know we have a rational reason for our actions or they'll just ignore them when they decide to think for themselves.

 

This made me chuckle. We had a similar, terrible teeth or anything oral struggle with resulting 6 cavities. Now, no more struggles brushing teeth! He is still the only one in our family to have had a cavity.

I would be frustrated with everyone trying to give my child food T1 or no T1. If she grasps the GF concept (totally awesome!), I wonder if you could just tell her-don't eat ANYTHING without asking/informing us. If she can't grasp the havoc of a short term spike (maybe she doesn't have symptoms or have great self-awareness yet) then you may have to stick with very simple explanations now for good habits to be instilled. Invoke a higher authority. The "Dr.", "Your CDE" said we need to test/cover carbs every time you eat. Show her the CGM (or meter) and say, "if you are higher than this #, that means you need more insulin." Food=insulin. And, family members should be on board with her T1 and stop the handouts or at least discreetly tell you? :cwds: She seems very smart and inquisitive, so I'm sure she will eventually understand more about the physiology of her disease. When I've answered my son's questions with, "Prolonged highs can damage blood vessels, cause DKA, and short term make your brain not work as great for a test, etc." he's usually just accepted that answer and moved on, "Oh okay, mom." The expanded explanation doesn't seem to be the motivator for him. He asks for a carb count because that's what one does when they have diabetes and there are times when he/us forget. We correct and move on....if it happened all the time it would be a bit crazy making. Hugs to you Snowflake!

 

Thanks, Samson and forHisglory for the support and for these very concrete suggestions! I'm going to look for the next opportunity for this to come up organically -- and then we can have some fun with sugar and water!

 

I think the age and the child affects the decision greatly. I did show my daughter photos of gross foot ulcers after diagnosis when she was literally kicking out to avoid a correction dose shot. Right choice? She thinks so. It was given with a message that we very much had control over it not ever happening, but that correction shots were necessary. She was 11 at the time, an age where kids are being warned about the dangers of unsafe sex, alcohol, drugs...why not the risks of their own disease? Her eye doctor that year talked to us both about retinopathy, what it is, and showed us retinal scans of it...and my daughter's...and told her the closer she can keep her A1C to a 6, the less chance of ever developing it. She then told her about her friend who had T1D for 30 years without developing it. Also the same year, we read a book by an individual which that talked about managing your diabetes rather than letting it control you. Her dreams were/are important enough to her that diabetes wasn't/isn't going to be allowed to prevent them. If I hadn't been honest with her and given her a sense of empowerment, she would have heard about everyone's grandpa, uncle, whoever, with their amputation very shortly anyway. I believe it was better that the communication line be open and that she didn't have to hide her reactions to such things or be shocked by them.

When she was 12, we did the T1U classes together. The first one I insisted on was about exercise, but she loved it, so we did them all, including pregnancy and weight loss. When Gary started off with all the complications in a T1D pregnancy, I wasn't prepared for it. My daughter was literally turning white as he talked, and I was kicking myself. However, he went on to say that women with A1Cs of 6.5 have no greater risk of deformities than anyone else. Her thumb shot out and up, and her color came back and she was very interested in the information.

I remember reading a post on here by a parent whose 14 year old had just learned about the complications while doing research for a school project. The kid felt betrayed and angry that no one had told her the risks of her own disease. It's a hard, hard decision of when and how much to tell them.

I would add to the discussion that older mentors/friends that have been through puberty with T1D or live with it as adults who can speak into the kids' lives about the importance of tight control are so important. My daughter has several of such in her life, and they mean so much to her....and are extremely motivating to her as well.

And I would definitely not go into detail with a 6 year old but I would let them know that keeping their numbers out of mustard and ketchup ranges as much as possible is important for their long-term health.

 

Thanks for sharing! You have done a great job trying to educate your daughter and prepare her for the adult world. That is wonderful you have kept the lines of communication open, especially during the teen years. Also, the mentors who have a positive influence seem to be extremely important. Even as a high school student, the child is not really in a position to thoroughly understand the arguments/reasons for certain positions. When depression or emotional issues or peer pressure come into play......consequences can often fly out the window. However, the relationship and therefore, authoritative and influential advice, of a mentor may be most important educational tools of all. A positive role model to imitate will be much farther reaching than any lecture! You reminded me of that fact.

P.S. The ketchup and mustard ranges- you must be talking about the A1C chart, lol!!

 

Dexcom graph: Yellow - high, Red - low

 

Have you asked her how she feels when she's high? Asking her when she's high can help her recognize the symptoms. From personal experience it feels pretty awful. I'd say that we don't want you high because it can make you feel bad! Simple 6 year old language. If she needs more explanation you can say it will could make you feel bad when you get older too.