My 5 year old is 7.5 months into this diagnosis. She was 4 at diagnosis and in DKA. She’s 5 now and while she’s adjusted pretty well, I feel like I’m totally failing her as a parent. We cannot get her blood sugar under control no matter what we do. We’ve adjusted her basal and bolus doses countless times. We’ve split basal into morning and afternoon. We have a Dexcom and the InPen. We’re starting her in therapy to help her with her anxiety about moving to a pump and will get her on one as soon as we can. I’m just feeling very overwhelmed, disheartened, and honestly depressed that we can’t seem to get her blood sugar down. She’s routinely in the 300s most of the day and we almost never get her in range for more than a day. I don’t know what to do. I’m so worried about her long term health, and so frustrated that we just can’t seem to get it under control. Any advice is welcome, but please be kind. I know how serious it is, and I promise you we’re not ignoring it.
Amy, first welcome to T1N. Now, you sound like a mom who is reasonably stressed. You mentioned BASAL and BOLUS and splitting her basal. I did not see what is in her InPens (Lantus, Novolog).
To offer the best advice, what you and you child need is a set of instructions from the endo & diabetes educators in the practice specifying:
- if this, do that, and go to step 3
- if something else, do the other thing, and go to step 3
- if the step did not work, do step 3 and watch.
- if after watching, things are not back where they should be, call the office 24/7
What I sense is you need some serious support. Moving to a pump with a CGM with a closed loop, where the pump and CGM communicate and function automatically will be a BIG STEP. I have been on such a system since January 2020 and followed social media. Going to a computer assisted insulin administration system is a BIG LEAP. You will want to learn to trust and verify the actions of the pump caring for your child. You may want to know what I am on, I am on a CIQ (short hand for Tandem t:Slim X2 with Control-IQ Technology (added software)). If you, your endo, and your child make the jump to something like the CIQ, there is a learning curve - education and training will be required.
I am tagging Dorie (@wadawabbit) because she has some really great vision to situations like you are describing. Dennis & Joe (@Dennis & @Joe) are two other people in this group able to share wisdom and illumination of the available paths thru this DIABETES FOREST.
Hope this helps. Please share what happens, your sharing is how we learn.
hi @amymacoy, welcome to Type One Nation.
adding to @987jaj I have a 1 word request: Perspective.
Please have perspective. I have proof you are not failing. It’s simple, hear me out - Less than 100 years ago, there was no insulin, and you daughter would not have survived 7.5 months without it. Since that is not the case, you are NOT failing. Nope. You are not, in any way, failing.
Kids have very wild metabolisms. they are growing, at some ages they double their body cell counts inside of a very short time. All that aside, I have been T1 for 40+ years, I consider my knowledge of the use of insulin at expert level. My 90 day history has a 39mg/dl and a 480 mg/dl. T1 is not a disease where you take x insulin and your blood sugar is controlled. T1 is a disease where hourly decisions are made and outcomes are observed at a minimum on 4 hour intervals. In other words, NO ONE with T1 has perfectly controlled blood sugar. if you dedicated 100% effort you might be able to but then you wouldn’t have much time left, for you know, living.
Kids seem fragile but they are tough as nails. a couple high readings after meals or randomly will not change anything. It is really common to look at a 300 and say “I failed” that number only tells you what to do now. It is not judging you. a 100 doesn’t mean you are awesome and a 59 or a 350 doesn’t mean you are bad. Think of the bs number as your speedometer, it tells you if you need to speed up or slow down.
it takes a full year to wire your brain to be a pancreas. please go easy on yourself. please do not beat yourself needlessly. Once again I got proof you are doing a great job. so keep it up. we are here to support you!
Hi @amymacoy. I’m so glad you found the forum. I get ideas in fits and starts so may have more to share later. But in my experience - with both a pump (20++ years, CIQ for a few months now), and 30+ years on injecting before that: if my glucose is around 300, no amount of insulin will even start to move my numbers down if I have not taken in sugar free fluids to wash out any ketones. . I find that the drop my be painfully slow at first - literally just a few points (5 or 10), and it may still take some time - but it gradually comes back to a number in a good range. So check the liquids - that may help.
There are parents on the forum of small kids who use pumps so they can give you input on various ones. I think like the Omnipod because it’s tubeless, which might be a plus for smaller children and those who might not like the idea of tubing.
Amy, hope this helps. I am a little like Dorie (who commented above) in I will get an idea and need to share it right now.
Insulin & carbs are like a horse race. One horse is carbs, the other is insulin. You want them to run neck and neck thru the entire race and have a tie finish, meaning the carbs entered the blood stream at the exact time and pace as the carbs and finish the race maybe a whisker apart. This doen’t happen except in the rarest of instances. If you can handicap this race, you are a winner. Don’t feel bad.
Hope this helps.
@amymacoy Hi Amy, and welcome to the JDRF TypeOneNation Forum! I hope that now you are here you will be able to see that you are not alone in trying to figure out what this “diabetes thing” is all about, and also see that “being in range” for more than a day or two at a time doesn’t occur very often even for the more experienced insulin experts. You are doing lots of good for you daughter.
As @Joe wrote, please have perspective - know that your daughter’s body is not a machine that can be programmed to perform on demand, but rather a living human being. Effective diabetes management is finding that VERY delicate balance between activity, food intake, and insulin injected/infused - and also includes many hard to identify factors that sneak in and mess up what otherwise were good calculations.
I can tell you right now, that of the close to 24,000 days that I’ve lived with diabetes that I may have been 100% in-range for for only a very small fraction of those days, yet I have been able to live a very full, active, happy, and productive life. Yes, I keep an eye on my diabetes around the clock, but I don’t let diabetes define me, or rule my life - I’ve grown to know what food to eat and what [amount of] insulin to take to allow me to do what has to be done, or what I want to do.
I know that I don’t like seeing my DexCom g6 giving me readings in the 300’s [which happens all too often after restaurant meals] , but I don’t look at those readings as TEST RESULTS. The readings we get from glucose meters, or from CGM sensors are not test results, but rather guide-posts we see along the diabetes highway to give us hints as to what actions MAY be needed. Like @987jaj wrote, your daughter [and at her age, you] will need to have an instruction plan funning in the background of your brain so that insulin dosing / food intake becomes second nature.
You are not failing your daughter - as an example, you are exploring here trying to gather additional bits of diabetes to help your daughter write her own diabetes management plan of book. Each of us, being living human beings, is slightly different and need to find wat works best “for me”. What I’d like to see, is your daughter living life fully, being a girl, flying free and that her diabetes management will soon be just part of life.
Hi @amymacoy. I’m back with a couple more thoughts:
- Have you worked with a nutritionist yet? While your endo knows the ins and outs of insulin therapy a dietitian may have more in depth information about the carbs and types of carbs - they are not all the same. Among other factors there is something called the glycemic index which measures how quickly the carbs in a particular good raise blood sugar, and whether they result in a sudden spike followed by a fall, or a gradual rise which levels out. A nutritionist may be able to help you determine if that or something else is a factor. So
- On a related note, there are a number of trackers available to record details. I use Mynetdiary but there are a number of others available. If you’re counting the carbs and not recording the foods this could help. You probably are - you sound like you’re trying your hardest to stay on top of things - but I just thought I would mention it.
- There are different formulations of insulin available now. I would not dream of second guessing you’re doctor and their choice, and I’m not a medical professional; but it could be worth asking if another one might work better.
Hi again. I almost hesitate to say this since you have so much on your mind right now, but keep in mind that if and when your daughter goes on a pump, you still need a working backup plan for shots. As I was writing some of my suggestions yesterday I was working on bringing down numbers that were in the upper 300s.
I was around 130 at breakfast, and bolused for some turkey sausage and a small glass of orange/strawberry/banana juice (I don’t drink juices often but decided to have some because I particularly like the flavor). I added on a cup of coffee later, and forgot to bolus for that - the caffeine makes me rise even though there were no carbs. So when I saw my numbers hit the mid 200s⬆️ layer I did a head slap I added a bolus to cover it - Control IQ generally does a great job of correcting for lows and highs, but in my experience it can only do so much if you have not accounted for your carbs (or in this case my caffeine). That’s something you will learn about if you switch to a pump and CIQ.
Anyway, my numbers didn’t respond to the added bolus, and while it can take some time I started thinking something else might be going on. I decided my insertion site may have gone bad - I’ve been pumping for 20+ years and while it’s rarely a problem sometimes scar tissue is a factor (your daughter being so new to diabetes should not have to worry about that for a while). I had placed a new infusion set the day before and it started out fine but and I thought it might have “overstayed is welcome” (if that’s even a thing). Something told me to gently peel the tape from over top of the insertion site rather than ripping it off as I typically do. When I did I discovered that my infusion set was on top of my skin rather than under it😫, so my insulin had not been entering my body. Evidently it was not inserted deep enough in the first place.I moved to another site, took a few units by injection to cover the high, drank some water and was coming back down to normal a couple of hours later. I’ve been fine ever since.
I want to assure you that is truly a rarity for me - I say that in all honesty. But as you and your daughter are considering switching to a pump it’s important to remember that things may happen, even if rarely, and it’s important to know what to watch out for and have a backup plan for injections if they’re needed, or if she just wants to take a break.
Thank you all so much for your responses. I really appreciate the kindness and the concrete suggestions like talking to the nutritionist, gaining clarity on the plan for correcting high numbers, and maintaining perspective. My daughter was diagnosed at the very beginning of the first wave of the coronavirus and it’s been the most nerve-wracking year ever. I don’t want her to suffer from this stupid disease any more than she has to, but it sounds like i need to reset my expectations for what managing diabetes actually means.
I know getting her on a pump won’t solve everything, but the CIQ at last seems like it could give a measure of consistency. Maybe I’m still wrong in my expectations; I still feel like I don’t understand why these highs are happening despite reading about diabetes until my eyes are ready to fall out. Eating the same food two days in a row gets two wildly different responses. It makes no sense. But I guess that’s just the nature of it?
Someone suggested tracking her foods and BS response, which makes sense. I guess the question there is, for parents - how do you manage? I have another child, I work, and we’re doing virtual kindergarten plus all the usual household things. How do you find time/space/mental energy to add even more? I don’t mean to sound selfish, I value her health over my convenience, but I’m more wondering how people fit in everything you have to fit in without losing their minds. Sorry, I’m rambling now - but again, I’m so appreciative of the kind responses. Thank you all <3
Hi @amymacoy. I don’t have children (diabetes is not the reason) so I won’t try to suggest I understand what you are going through. But try to breathe - take some deep breaths to help gather your thoughts and center yourself. Now, know that there is no need to apologize for anything. You are trying to do the best by and for your daughter who had a condition that doesn’t always respond the way we expect it to.
Having a good diabetes team is invaluable. You didn’t give details about yours but ideally it would include
- an endo board certified in treatment of diabetes, and in this case one who specializes in children.
- a diabetes nurse educator - they can guide you in overall training and help develop skills needed to manage; and they may be more readily available than your doctor when you have questions.
- a nutritionist, who can help with carb counting and may have some insight into whether certain foods or types of foods may be causing the spikes.
If you’re happy with your doctor by all means stick with them. But if it would make you feel more secure to see someone new or get a second opinion don’t feel bad. Sometimes a new set of eyes catches something the others didn’t.
You’ve had a lot to learn and absorb over the past year, some of which is not working - which makes it all the more frustrating. You’ve probably read until you’ve developed headaches and are still trying to take it all in. If I might suggest, force yourself to step back a bit. The brain can only take in so much at one time and you have to let it “gel” so you understand it before taking in a lot more. It might help to get back to basics - I’ve had diabetes for 50++ years and my endo occasionally refers me to her DNE for a refresher😊!
As far as tracking what she eats - you’re doing this now, but I find there’s something about documenting it in my tracker that’s especially helpful. Mine shows me to mark certain foods as favorites so I can find them easily and is pretty well organized so finding the food I want is pretty simple. A nutritionist will want to see some meal records - there was a time when we had to look everything up in a book and write it down so this is much more efficient. I can also track my insulin and exercise to help discern patterns with everything in one place.
Tracking is one more thing to add to your list, but it might be very helpful to get team in making adjustments and hopefully getting her numbers into a good range.
You’ll find lots of support on this site so hang in there.
We are fortunate in that we receive care for my daughter through CHOP, which is a world-renowned children’s hospital. We have a CDE, nurse practitioner, dietician, and endocrinologist on our team. They’re generally quite responsive and do a lot of appointments and education during the first year of diagnosis. We usually talk to our CDE about dosing and day to day issues.
When we spoke with the dietician at the time of diagnosis, she ok’d our typical meals and said she didn’t see a need to change anything. My daughter’s food choices are limited because she’s 5 and resistant to trying new things, so it’s the same handful of meals in rotation. Chicken nuggets, fish sticks, rice, pasta, fruits and veggies, yogurt, and cheese are the main elements of her diet. Plus the typical kid snacks like goldfish crackers, stuff like that.
So far, the CDE approved my decision to increase her morning basal dose and wants to review the data to determine if we need to further adjust bolus dosing. She was in range this morning when she woke up for the first time in a week, so hopefully we’re at least moving in the right direction. It never lasts very long, but I’ll take what I can get!
Thank you for sharing. I’m glad to know you have a great and knowledgeable team - that’s not always the case. And I’m so happy to hear she woke up in range today! I hope the duration of those numbers increases, even if they’re not always where you want them. Keep us posted on how you both are doing.
Amy, reading your story about " Eating the same food two days in a row gets two wildly different responses. It makes no sense. But I guess that’s just the nature of it? " hit a cord for me.
I was in a situation where I had the same meal, at the same time, at the same sit down Italian, fast food establishment. At that time I was on a primitive pump, carb counting, using an early Dexcom CGM, and finger sticking. I did all of the calculations, and dosed for the 3 meals between ordering and getting food to the table. You would think with all of that effort, the outcome would be ‘spot on’. Guess again, just as you described, my glucose levels after each meal were as crazy as a critter with a load of rock salt from a shotgun.
Having shared this with my wife, the next time we visited my endo’s office, I stopped by the CDE/pump trainer’s office and related the story and included the pocket notepad where I recorded my calculations. My question, what is going on?
The CDE shared my math was correct, we looked at the Diasend data I had uploaded. All was fine. Then, the CDE shared the answer. SWAG. The answer is SWAG. What? The CDE explained the management of diabetes, carb counting, and insulin dosing is a Scientific Wise Ass Guess!
OK, not the best language. However, I am sharing this story with as many of the details present to demonstrate “all the kings horses and all the kings men” are still chasing their tails to put Humpty Dumpty back together again.
I hope this story helps you. You can do everything perfectly and the situation will still take unpredictable paths.
As far as tracking food goes, may I suggest MyFitnessPal. It has a barcode scanner and a good database of foods, portions, and nutrients including carbs. I find it to be accurate. The latest release includes a plate photo feature to determine nutrients I have not tried to be able to speak about with confidence.
I too have rambled. Tried to be uplifting. Please continue to ventilate and share.
@amymacoy first of all I just want you to know that you’re not alone! I found myself in the same exact shoes just 3-4 weeks ago. I too was distraught and frustrated for the same reasons. We just started my son on the pump and his numbers are still working on getting back to “normal”.
As mentioned above, the key is to SWAG. Trial and error is how I have found things that work.
We noticed with my son that he was so much more sensitive to carbs and then when he got over 200 his high was just that much more stubborn! We still don’t have it all figured out yet. Are you noticing any food that seem to make your kiddo go high? Or a time of day maybe?
Before we were on the pump I had upped my sons basal 3-4 units. And every other day we changed his ratio for carbs… try getting one meal of the day figured out at a time. Once you have breakfast figured out. Move to lunch. And then dinner.
Make small changes at a time. I learned too that making sure to wait 10-15 minutes after bolus to eat helps a lot too.
I hope this helps a little!
Courtney, welcome to T1N… Your sharing your experiences with your child adds to the light in this group. Your idea of tackling one part at a time resounds of the story about eating an elephant - - - one bite at a time.
As more parents find this forum and the parenting section, power will spread to all.
Thank you for your wisdom and sharing.
Just adding to the chorus of support. I’m also mom to two kids (one with T1D and one without), and I also have a paid job and a spouse and all the household stuff and in a pandemic, with the kids attending school from home. It’s a lot. Adding the task of assimilating T1 management at the same time? You’ve earned every merit badge there is.
Be kind to yourself, too, and keep posting. We’re here for you.
You are NOT failing! T1 is an everchanging disease. You can do the same thing every day but have different results. Hormones, stress, sickness, activity, etc. all have an effect. You are doing your best and it will get better. Keep connected to this community for support. There’s been some great advice here. The one thing that I think would help without adding to your stress would be to focus on hydration! When my numbers are high, I increase my water intake. Hydration helps with the absorption of insulin. That’s what my Endo told me and it works from personal experience. I’m sorry you and your family is going through this, but it will get better.
It really makes me feel better seeing each of these kind replies. We’re doing a little better in terms of her levels this week since making the last adjustments. One day/one dose at a time…
Amy, in an earlier message you mentioned CIQ. Did your daughter end up ‘flying the friendly skies of CIQ?’
Your ‘one dose at a time’ seems like you are still on MDI. Just trying to learn from what you have shared.
I am a VERY new pump user (maybe 6 months?) (Medtronic 770g, just upgraded!), and I am so happy that I did. It really did simplify the insulin process for me; with the CGM, it works 24/7 to be a pancreas. Yes, there is quite a learning curve, but the first time I hit a week of 86% in my target range… woo-hoo! My trainer is awesome… don’t be afraid of the new; it is just a new way to succeed!