New T1D Wild Spikes (5 YO)

My 5 year old daughter was recently diagnosed with T1D after a scary DKA episode where she ended up in the ER. After a whirlwind week of emotions and learning, we are now back at home with her. She is using a CGM.

My concern is that her blood sugar is spiking all over the place and on average is quite high. She will regularly spike to 350 and above after meals. She will come down to around 180 before the next meal meaning no correction (as the trigger for that was set at 250). We keep testing her ketones with urine strips and they are small, sometimes bordering moderate (depending on how strict we keep to the 15 seconds). According to Sugarmate her average over the last 3 days is 231!

For food we are giving anywhere from 25-35g complex carbs per meal, with a good mix of fats and protein. The hospital has our ratio set at 1:15

Right now it’s 4am and I am up staring at her CGM numbers which have been at 230 since she went to bed at 8pm… she is acting totally normal during the days. Our diabetes coordinator didn’t seem to think this was an issue when we talked to them 2 days ago. But the more I read in online forums, it seems this is unacceptably high.

Can anyone offer some guidance?? Thanks

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Cp11, I have nothing for you. As a parent and grandparent I cannot begin to understand the worry having one of your little ones come down with this or any other serous illness. My heart goes out to you.

You are in a good place to find some answers from other parents and those who, like your daughter were diagnosed at a young age as type 1.

Good luck to you, your family and especially your daughter.

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First of all, welcome to this community!

Your family has endured quite a shock and it will take some time to get to a new normal. But that will happen.

I was glad to read that you’re using a CGM. It’s a huge benefit in the education aspect alone.

What does your daughter take for basal insulin? You didn’t mention a pump so I’m guessing that you’re using insulin pens. Does she get a long-acting insulin injection? Common names for this type of insulin are Lantus, Levemir, or Tresiba.

The reason that I ask about this is because mealtime insulin alone can often produce the erratic spikes that you report. But many other things can cause this as well.

What kind of foods, specifically the complex carbs, do you feed her? Have you tried a meal like scrambled eggs and bacon/sausage yet?

I’m sorry for this setback to your family’s health. We all know that it is not easy and I can only imagine the extra stress put on the parents of a young child diagnosed with T1D. You are doing the right thing reaching out to the community as part of your learning process.

You will get much better at managing your daughter’s diabetes but your education will take some time. I can imagine no higher motivation for anyone to learn anything when it is motivated by the love of parents for their child.

I am so impressed that your medical team has already placed a CGM with her. This bodes well for making good treatment decisions. You will learn a ton from the CGM! I encourage you to keep a journal containing foods eaten, insulin given, and glucose levels. Pay special attention to timing as timing is a big deal.

I wish you the best and encourage you to post whatever questions may arise.

By the way, check out Scott Benner’s Juicebox podcast. His daughter, Arden was diagnosed with T1D when she was two. Scott has been the primary diabetes caregiver for his daughter. Another parent in the diabetes media arena is Stacey Simms with her podcast entitled, Diabetes Connections. Her son, Benny, was also diagnosed at a very young age.

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Thanks for the responses and words of encouragement! I’m a big podcast listener so ill definitely check those out.

In response to the questions:

She’s on 9u of Lantus (given daily in the morning). And the fast-acting is Novolog. Both are given by pen.

For her carbs, we’ve been giving her whole grain bread, brown rice, sweet potato, veggies. And this is usually combined with a protein like eggs for breakfast, or chicken for lunch/dinner. In between meals we’ll give her some yogurt that only has 2g of carbs, or some cheese sticks and lunch meat.

This morning she woke up at 180. We gave her the insulin shots, then she had ONE piece of whole grain toast (19g) and 3 scrambled eggs. An hour later she spiked to 342! Now it’s been about 2.5 hours since she ate and she’s down to 162.

I know that spikes will happen, especially in the beginning as we learn and her body adapts. But im just more concerned about the average number being so high. I just don’t understand why her blood sugar is remaining high with the insulin in her body?

Dosing insulin is complicated. It is a unique combination of science and art. If you pay attention, write stuff down, and willingly experiment, you will shorten your path to proficiency.

In my experience (not universal!), things like whole wheat bread, brown rice and sweet potatoes spike my blood sugar. Some people can refine their dose size and timing to reduce or even eliminate the spike but that’s a game that I choose not to play.

Dr. Bernstein, himself a long-term T1D, has written about his law of small numbers. This law essentially says that fewer carbs leads to smaller insulin doses and smaller mistakes. Mistakes are inevitable – smaller ones are easier to deal with than larger ones.

Insulin dosing, as I’ve stated before, is a combination of science and art. Your 1:15 insulin to carb ratio is definitely not a set-it-and-forget-it ratio. In fact it’s likely that your daughter’s I:C ratio changes during the day as well as from day to day.

Diabetes is a dynamic disease. The body’s sensitivity to insulin changes – it is not static like the precise ratios that you’ve been given suggest. This is why, especially in the beginning that you record what you do and be willing to safely experiment. These experiments are what will educate you about the unique metabolism in your daughter.

So, there are a lot of moving pieces in this puzzle and your medical team is likely deliberately moving slowly to make changes. Her basal insulin dose size could be the main reason for the meal spiking.

Basal insulin is intended to metabolize the pulsed glucose drip coming out of her liver, nothing more, nothing less. It is a separate job from the meal insulin.

There are protocols called “basal tests” that help to discover the optimal basal dose. Here’s one basal testing protocol from Integrated Diabetes Services. IDS was founded by Gary Scheiner, author, T1D and certified diabetes educator. He wrote Think Like a Pancreas, a book I highly recommend you put on your reading list. I have no financial or otherwise connection to Gary Scheiner and IDS except as a satisfied customer and reader of his books.

I know you look to your doctors for guidance and you should. Over time, you will come to depend more and more on your perspective. This is natural and I believe, preferable. Some people continue to depend solely on their doctor’s advice and I understand that.

But the ideal situation is when the the person themself (in your case, the responsible parent) attains PhD level understanding of one unique glucose metabolism – your daughter’s.

Be aware that my take on this is not without controversy and you should move slowly and carefully if you choose to take on this role. Careful observation, good record-keeping, and persistent experimentation are the keys to success.

You still need the doctors and incorporating their guidance into your treatment plan is the challenge you face.

I apologize if I’m dumping way too much info on you in a short time! Learn a little every day and you will soak all this up in due time. Feeling overwhelmed at this stage is normal and this time will pass.

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I was also diagnosed at age 5, but it was over 55 years ago. So much has changed!

You may find this helpful, from another diabetes forum that many members here also use.

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As a community we really feel for you and you have our utmost compassion. We understand the struggle… The problem in these early days is that NOBODY, not even the doctors, know how your daughter will respond to insulin yet. I assume you have an appointment with an Endocrinologist or Diabetic Educator set up for the near future? If not, thus needs to be your next step. They’re the ones who will help you dial in how to dose her insulin and how to time the insulin to balance food. But meanwhile, in this short interim before then, it’s actually safer for your daughter to run a little high than it is to over-dose the insulin and have to deal with the hypoglycemia. It’s the lows that are scary and the immediate threat.

If you’ve already got an appointment set up with the Endo/DE, you may be able to speak to a nurse from the practice sooner, who can advise on insulin adjustments. I say maybe, because there’s a problem with liability and lack of paperwork. Maybe you could go to the office and ask to fill out all the new patient paperwork, though?

Do not try to get dosing help from the ER again, unless you fear DKA. They’re good at handling emergencies, but they suck at preventative medicine and chronic conditions.

One of the best things you can be doing before your appointment is gathering all the possible data you can. How much insulin was given and when, exactly what was eaten and when, and how her blood sugars responded to those things. The more data you go in armed with, the best help your new medical team can give you.

There’s an app I like for early days called MySugr. I say early days, because it gets monotonous after a while. But if you feed it enough data. (LITERALLY, you’re feeding a cartoon monster diabetes data… and it’s HUNGRY), it’s really good at helping one figure out your insulin:carb ratio (how many grams of carbohydrate 1 unit of insulin will cover), your correction factor (how many blood sugar points 1 unit of insulin will drop you), and see how well the basal (her Lantus in this case) dose is working. These are the tools that you really need to tackle this. Only the IOS version let’s you plug in CGM data directly, but even if you’re on Android you can just manually enter a bunch of her CGM values. The more the better. There’s even a children’s version of the app she might enjoy.

And while there’s a food database built in to MySugr, you might find it inadequate. It’s fairly small. A lot of us use either the MyFitnessPal or CalorieKing apps to quick reference our food stats. I like MyFitnessPal because you can save common meals, but a lot of details are hidden behind a premium paywall. CalorieKing is more transparent, but not as feature-rich.

https://www.myfitnesspal.com/

https://www.calorieking.com/

And take a deep breath! You got this, I swear. It’s over-whelming at first because there’s so much new information to take in, but you will adjust. In short time you’ll feel more equipped to handle this all (though we never stop learning). You will see 350 on the meter again, you’ll probably even see it read “HIGH” some days. There will be good days and big oopses. None of those challenges is causing your daughter permanent harm, though. Whether or not she develops long-term complications is a bit of a lottery. For the most part, though, they come from long-term neglect, not these brief periods of struggle and learning.

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A CGM will be invaluable. started at 180 and back to 160 in 2.5 hrs. The high spike could simply be because the premeal bolus wasn’t given early enough?

It’s a steep learning curve. I would see if there is an insulin course at the hospital, or where they are run in your location.

this will give an overview. close the popup

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@jack16 - That is a great resource. I think it would be helpful for @Cp11, I know it has been for me. I am a type 2 DM on MDI since January. I have been tweaking mostly my basal, bolus seems good at 1u/20grams. Most everything on MDI is set up for type 1 DMs. I don’t make enough insulin any longer, but I do make some. So the ratios of basal:bolus don’t work for me.

currently I am using 28u of Lantus to 4 to 5 units Humalog in a day. Doesn’t sound like much, but if I don’t do those little boluses, I will spike to the heavens.

Anyway thank you for the link from me and others.

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Thanks again everyone for the words of encouragement and suggestions.

Today we talked to one of the educators and we all agreed to up her basal to 10u and see if that will help. Today she spent a good few hours between 100 and 180 so that was encouraging.

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2 hours after a meal is a good time to make a correction. I know doctors want to err on the side of running high rather than low.
I would def correct anything over 200. I was diagnosed at 21 and I was told to run high too, until my sugars had settled down. Which I did, I ran in the low 200s most of the time, but I was chronically dehydrated and I had no energy.
I started bring myself down into normal range after 3 or 4 months, but without cgm and only one or 2 finger sticks I was flying blind most of the time.

For a short time, it won’t probably hurt her. But she will feel better when she’s in normal range

They call this “roller coastering.”

How you begin to address this is to figure out a correct basal (long term insulin) dosage. After you think you have that pinned down, move onto adjust the short term insulin dosage.

Take a week (if that’s enough time), and see how the basal (background/long term) insulin behaves when your kiddo has no short term insulin or food being processed.

It takes 4 hours for corrective (short term) insulin doses to get processed by her body.

It takes 2 hours for the short term (bolus) insulin to get processed for food she eats.

Its easiest to start by checking how BG behaves overnight.
She wont be doing anything while she’s sleeping, so it gives you a very long period of time to see how the numbers behave.

Check BG before bed and when she wakes up. That number should be pretty similar. It will never be exactly the same, but if she goes to bed at 200, and wakes up at 180 - 240, the dose might be kinda close to correct.

Never change insulin dosages off of one test alone. Run this test a bunch of nights in a row. Take notice of how variable BG behavior is over the course of a week or so,

Write down the numbers you collect and report to your Doc or us for clarification/interpretation. Since your new to this, I want you to talk to your Doc about changing insulin dosages. Tell the Doc that you suspect the basal dosages are inadequate.

Wishing you the best! Keep in contact with us. Know that Doctors are generally not great at predicting people’s insulin dosages because every patient is different. A lot of this responsibility will fall on you, and eventually, your child. Its fair to let you know that upfront so your not surprised. You can do it! Don’t be too hard on yourself. Its a process of learning that takes time. Sometimes we make great leaps forward in understanding and sometimes we don’t, but over a lifetime it somehow adds up to knowing what your doing.

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Hi! Welcome to the club that no one ever wants to join. :slight_smile: I’m the mom of a child who was diagnosed at age 3, and is now 17. I also have T1 myself, diagnosed last year.

My best advice to you is that this is a marathon, not a sprint. I agree with the above posters who have said that the doctors are probably being cautious right now with the insulin dose, not wanting to cause lows. I’m sure they will help you tweak dosage over the next few weeks and months to tighten things up. For now, don’t stress about those 200s. Just keep good records of insulin given, food consumed, and anything else that may be relevant. It will help your team help you.

This is such a stressful and scary time, but it will be okay. I was in your shoes 14 years ago, and just today I sent my son off with his grandparents to Arizona for two weeks without me. Hang in there.

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Thanks for posting this link, @jack16. I had not seen this resource before and it’s very well done. It’s a perfect tool that @Cp11 can use as a primer to learn the terms and start to make sense of all the concepts that have been thrown at her.

The only nit-pick that I can make about this work is that, by way of all the examples it uses, it appears to be firmly in the “carb-up, shoot-up” camp of insulin dosing. In other words, you can eat anything you want, just cover it with insulin. I consider that style of eating much riskier than moderating carb intake and reducing the glucose volatility intrinsic in many of us.

Great link! @Cp11, I encourage you to spend some time with this resource. It will be time well spent.

Hi Cp- I’m sorry you’re here and very glad you are. Protein such as eggs - will typically raise blood sugars. I have to bolus for them as if they were carbs… so do many others. You might want to experiment with giving bolus insulin to cover it. In fact, many diabetics take insulin to cover protein.

My advice is look at the egg thing but don’t worry about other proteins as of now. One thing at a time. We are here for you.

Did Terry or anyone else mention anything about the ingestion of foods high in fat and proteins? These will change the BG curve and may be why you see stubborn highs that take a long time to go down.

It has to be very difficult managing T1D in a child. I am managing T1D in my wife who also suffers from multiple brain diseases (starting at age 55) and now has no ability to manage her diabetes. We initially started out with injections but are now on a pump and CGM combo. There are many challenges in managing another individuals diabetes and we wish you the best in your journey. Knowledge is king and can make a huge difference for you and your daughter going forward.

At any rate, we began our journey having read a book titled, Think Like a Pancreas, I think the author is Schenier or close to that. It was helpful to us. Hopefully you will find some information here (I’m sure of it!) that will be of value to you!

Best regards,
-Steve

They are all like that. Welcome to roller-coaster heaven. It’s what they are going to be told and why add fighting with a dietitian to the mix.
It’s early days and they will probably swap to a pump after they learn how to drive the pens. Including a delayed split bolus for half the protein. Adding it to prebolus can cause a low, before the protein kicks in.

later they may find this Bernstein group astounding.

https://www.facebook.com/Type1Grit/

2 x 90 day CGM charts
image

Great CGM reports, Jack. Mine are similar. I never did think much of the criticism that carb limits are not sustainable. That might apply to particular people but it’s not been my experience. I’m at nine years and counting and wonder if I’d even be alive if I had not chosen that path.

I’m a member of the Type 1 Grit group as well. I don’t participate there much but I login every once in a while to see what’s going on. Their glucose numbers are much like ours.

I feel much the same way about dietitians. I don’t like arguing with them as it doesn’t do either of us any good. When I started with the diabetes clinic I’m in now, a dietitian briefly met with me and asked if I needed any help. I politely declined and they haven’t bothered me since.

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Maybe this isn’t the place for how this discussion is turning? The family has got to be feeling overwhelmed already without the Bernstein/low-carb debate, and probably haven’t even had a first diabetic nutrition class yet. Maybe give them a chance to get settled in with the basics first?

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I think that is what I am saying in my posts and to go a step at a time @Robyn_H it is overwhelming.

I actually think the next action should be a ‘sick day rules’ plan. Trying to find it out at 4 in the morning with the child throwing up in a bucket, can end with a trip to ER.