Newly Diagnosed Toddler

Parents
1

It’s been about 6 weeks since my daughter was diagnosed with Type 1. She spent her second birthday in DKA and it all still feels so surreal and impossible to actually manage. She’s a tough kid and is wearing a Dexcom and taking the injections really well. But we’re still working with her diabetes team on getting her insulin dosages right. This week has been all over the map - and I feel like we’re getting to the point where our questions about what to do are more nuanced and there aren’t always answers- just general guidelines. So listing a few questions - and welcome suggestions.

  1. What do you do when your two year old won’t drink juice or eat candy for her low at 2 am?
  2. Why on earth would she get 2.2 for ketones after being over 350 for like an hour, when on other occasions she was 0.2 after having multiple hours over several days over 300?
  3. How long does it take for ketones to be dangerous? (1 hour, 5 hours, days?)
  4. If we try dosing before a meal, but her BG goes down while I’m calculating - should I recalculate with the new BG? Or should I scrap it altogether and dose her after eating? Let’s say more than 10 mg/dL in 5 min. But this was like 30mg/dL less in 5 min - arrow down.
  5. Around 2 hours after lunch she dropped 40 mg/dL every 5 minutes, arrows down from like 247 down into low 100’s. So we freaked out and gave her juice. This brought her up to 125 for 20 min then she started dropping more slowly again. So we gave juice and she went up to 225. For reference at night if I give her juice it usually takes her from just under 70 to 350. So, is this likely her insulin kicking on - or would this be more related to her insulin dosages? And in these situations are you all actually waiting until they get below 70?
  6. How do you keep track of everything that’s going on to share with the doctor? I feel like every 24 hours is it’s own novel.

Sorry so long. Open to any suggestions - or even some free snack ideas. (And is 15 g really free for a toddler - bc that will send her through the roof)

Is it me or is it wild that there seem to be the same rules, products, etc for my 24 lb baby as for 200 lb adults?

2

@Lucky13 , you are correct in questioning this - each of us is different and there isn’t a single rule that applies to all, other than we each need to inject or infuse artificial insulin. Add to that, we each write our own “rule book” for OUR diabetes management and be ready to make changes as time goes on; with a toddler, you will be making many changes as she grows. I’ll make some comments and suggestions for your questions based on my experience but skip questions directly geared to a young child.

  • Why on earth would she get 2.2 for ketones after being over 350 for like an hour, when on other occasions she was 0.2 after having multiple hours over several days over 300? Keep in mind that “high blood sugar” and DKA are not the same thing, although high BG over time will lead to DKA. Ketones are created when the body breaks down its own fat and tissue because insulin isn’t present to use the food she eats; if you give her sufficient insulin her body will not need to consume itself. I had a serious infection a few years ago that kept my BGL over 500 for a few days, but never had more than a trace of ketone; I was injecting rapid-acting insulin in significant amount every 3 - 4 hours, plus insulin with all meals and my pump infusing at 200%.
  • If we try dosing before a meal, but her BG goes down while I’m calculating - should I recalculate with the new BG? Or should I scrap it altogether and dose her after eating? Let’s say more than 10 mg/dL in 5 min. But this was like 30mg/dL less in 5 min - arrow down. If her BGL only goes down a couple of mg/dl no need to recalculate, but definitely recalculate if it drops 5. Be aware that this might indicate she is changing rapidly and could drop significantly. In cases lik this, I hold off the insulin until I see a couple of CGM dots at the same level, or start up from my food before taking insulin. True, my “waiting” might cause me to be higher tan I want to be a couple of hours later but I believe caution is important. A “high” can easily be corrected later.
  • How do you keep track of everything that’s going on to share with the doctor? I feel like every 24 hours is it’s own novel. Even at 65 years into living with diabetes I keep a small notebook into which I write ny activities, food carb count and insulin dose. I use this information along with data from my pump and CGM to list the items I want to discuss with doctors. Sometimes when questions are complicated, I will send them to the doctor a few days before my visit.

I’ll answer your several questions in #5 later - my daughter is waiting for me now.

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Hi @Lucky13 and welcome to the forum. I was the toddler with diabetes but don’t have children myself so I’ll just address your question about recordkeeping and bringing up numbers overnight.
@Dennis keeps handwritten notes but if your writing is a bad as mine😊 there are many apps available online, and I think most are free. MySugr and Sugarmate are popular but shop around to see which one works best for you. And I think you can find diabetes logs at your local bookstore - they have different sections broken out which might be helpful. The more precise you are with the details, the better you and doctor (and you on your own, eventually) will be able to analyze to make adjustments: record quantities as best you can (say 4oz of juice, rather than 1 glass).and times of meals and insulin. Do the best you can with toddler activity - I expect it will be challenging, but "Ran around the house at full speed from 9-9:15am Tuesday and “Mommy/baby yoga noon-1pm Thursday” are examples.
As for refusing a snack overnight, there are glucose gel packs you could try.
There used to be a recommendation if someone was unconscious, to squeeze a little into the person’s cheek and rub it in to help it absorb - I don’t see why that wouldn’t work with a conscious but stubborn little toddler. But do check with your doctor regarding safety of the process and how much to use as I don’t have experience with kids.

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Thanks Dennis. This is really helpful. I have to remind myself that more insulin isn’t bad - it’s just what she needs. Also, really helpful to know that even a “pro” at this sometimes doses after a meal if BG numbers are dropping. It really is so much to learn about why and how her body is reacting to everything. Really appreciate you taking the time to share your insights.

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@wadawabbit thank you so much for responding. It’s nice to think this toddler will grow up and may help other people to figure this out. I actually haven’t been keeping track of how active she is - and definitely will start. We did a lot of running around outside the last two days - and I wonder if that impacted her BG staying elevated and having ketones? I’ll look into the notebooks and glucose gel! Thanks again!

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So first, welcome to the forum. And you’ve got some great answers here already so I’ll keep it to my experience

A low will make me crave food so typically it shouldn’t be much of a problem. There has got to be candy she’ll eat. Cake frosting is great too. Do not sweat it. Juice = candy when you need emergency carbs, juice can be slower than sucrose.

Along those lines please consider buying the book “Think Like a Pancreas “. Lots of good info.

On ketones, she needs calories and so any kid any time could have ketones if she isn’t getting enough calories from her meals. Illness causes ketones as well. If she has high ketones and no insulin, she could get into trouble with dka. In an emergency please call her doctor, for a non emergency, control blood sugar, drink water, eat more calories.

Our injected rapid acting insulin takes some time to start and then keeps chugging away for 4 hours. Her body produces insulin that is faster and her body wants her to be 70 mg/dl, which can be scary. A CGM is likely 20 minutes behind reality so it’ll show dropping even when her blood sugar starts to rise.

I hope you have the resources you need. The first year can be difficult, you are on your way to being an expert I promise you will get there.

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One additional thing I’ve found about ketones: on those rare occasions when my numbers hit 300 (that’s “my” number and may not apply to your little one) no amount of insulin will bring it down until I wash out any ketones. A large (12oz) glass of water actually gets the process started for me although it is a slow process. I don’t know what the corresponding amount would be for a tiny little body but your doctor or nurse educator can advise you.

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Hi, @Lucky13, and welcome to TypeOneNation! I think the only Qs that haven’t already been answered by the awesome folks on this Forum are the ones about free snacks.

As for what counts as “free,” you’re absolutely right: if it sends her BG through the roof, then that’s not. :slightly_smiling_face: Let the endo, educator, or nutritionist (whomever is easiest to get ahold of) know, and they can help you find the number that works for you.

And for low- or no-carb snack ideas, you can search the Forum by typing keywords in the search box at the top right. Here’s one thread, just for example, started by another parent of a then-toddler, with lots of great ideas shared in response:

Post back with more questions as you think of them, and hang in there!

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@Lucky13 your question that I skipped over yesterday has ben answered very well already, so I’ll only add one thought. For me, and many others, “overtreatment” of a low is a natural reaction and very common - as @Joe wrote, a low causes a craving for food and now, even while watching a CGM and not seeing it “rise” quickly enough we want to add more fast-acting carbs. Keep in mind that the quick carbs like from fruit juice or candy don’t last long and you may see a BGL drop very soon. Also. the body natural response when we are low releases glucagon stored in the liver which contributes to your daughter’s “70 to 350”.

I also want to expand my response to your question about recalculating a meal-bolus if you see a CGM change. When using a CGM we should always look first at the recent trend and especially at arrows. If her BGL is already near “Target” and dropping it may be safer to delay giving a bolus - especially if there is possibility that she may not eat everything on her plate. As instructions for CGM use [medical professionals often don’t include this in advice] tell us to look at multiple points and observe trends. The FDA in approving Dexcom G6 included in its letter [BOLD is mine]:

  • The Dexcom G6 System is intended to replace fingerstick blood glucose testing for diabetes treatment decisions. Interpretation of the Dexcom G6 System results should be based on the glucose trends and several sequential readings over time. The Dexcom G6 System also aids in the detection of episodes of hyperglycemia and hypoglycemia, facilitating both acute and long-term therapy adjustments.
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Hello fellow T1D toddler parent! Our now-2-year-old was diagnosed at 14 months. First, you’re doing great. Really, you are. It’s taken me a year to feel like I have any tiny tidbits to share that might be helpful. Don’t worry if you’re a year in and you still feel like you’re riding the rollercoaster - I’m right there, too! So many things have changed for us over the course of the last year, but it’s my hope some of what I can share might give you a new idea or 2 to try.

1.We never do the rule of 15 carbs for a low. It sends our son to the moon. We use milk in a bottle for lows at night, and we do increments of 1 ounce. For example, if he’s 70 and steady, we’d do 1 oz of milk which is about 1.5 carbs. This will usually bump him into range. They’re so sensitive when they’re so little. Another thing to keep in your back pocket is the glucogon. Our pediatric endo told us we can always use that and only give him a partial shot if he’s unwilling to take carbs in any other way. (You’d for sure contact your doc if you do use glucogon).

6.If you look on Amazon for BG record tracking, you’ll find some books or journals. I used these as a guide for creating my own in excel and printing them on sticker paper. I could make them as big as I needed to include relevant info in my Target planner (specific foods at each meal, activity notes, etc).

We don’t really count any snacks as free, unless it’s a meat stick or cheese. Honestly, at the beginning of our diagnosis I was worried our toddler would never poop again based on how much cheese he was eating​:laughing::grimacing:. Toddlers are sure good snackers! We cut cucumbers into tiny spears, zucchini spears, PB on rice cakes (7-ish carbs), carrots with low-carb ranch or hummus, bell peppers dipped in cream cheese, cheddar popcorn, breakfast sausage, pine nuts (any nuts, really!), Magic Spoon dry cereal (just 14g carbs per cup), Two Good yogurt or Keto yogurt, or sugar free jello. The first year for us was really expensive trying out allllllll the low carb things. We still like Ultima powder (it’s a dry mix for 0 carb flavored electrolyte drink), low-carb marinara sauce, and Mr. Tortilla’s 5 carb soft shells, but many other low-carb snacks ended up being a bust for us.

Let me know if you need a fellow T1D toddler parent to chat with! I felt pretty isolated last year after diagnosis (Covid didn’t help, I suppose!) and so I hope you know you’re not alone.

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Hello Lucky 13, regarding your first question of what to do when child will not take juice/candy for 2 am low, here are a couple of ideas.

  1. There are glucose gels in tubes that can be purchased, for example drug store chain like CVS. I used to put a dab or two of gel on my finger and then smear it on my kid’s inner cheek or gums. As long as I could get it onto his cheek or gums it would absorb through the skin. Even if he were sleeping, I just had to smear some glucose gel inside his mouth.

  2. Similar idea is to take a smear of jam or jelly, and smear it on my kid’s inner cheek or gums.

When he was small (toddler), I would not load in the “15 g” because that was too much on a small body. I used to just use small increments.

I would be cautious so he would not choke if sleeping, but these small dabs of a jellylike material in the cheek did not lead to choking.

You should double-check with your doctor, of course, but these steps were helpful for us.

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Wow. I’ve been too exhausted the last few days to respond to the forum, but thank you so much for this wealth of information! I’m so appreciative- and it will take me time to consume all of this and respond to each of you individually. But it is so nice to know I’m not alone and I’m not crazy. Her numbers have been all over the map this week - and hearing that we need to adjust to what works for her is truly helpful. It probably seems silly, but as a strict rule follower I needed that permission to follow my gut.

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No need to apologize. As for rules, I’m a pretty aren’t follower myself. But keep in mind all of us learn to read our own bodies and their responses. So while the rules are a guideline - a starting point - we may need to adjust as necessary. This of it this way - the speed limit on your local highway may be 55, but if a tractor trailer comes barreling up behind you at 70 you’re going to speed up until you can get out of the lane. The 15 rule for treating lows may work well (or not) for adults or older children, but not for your little one - someone else already shared they don’t use it - I hope they’ll show me to suggest that they adjusted that rule as works for them. Things like that. You’ll learn as you go how to modify insulin doses on your own and other things, but for now work closely with your doctor.
BTW, I was diagnosed at 3 years old and while I may not have understood what was going on, it didn’t take long for me to be and to communicate to my parents that something was wrong - I probably said something life “I feel funny” which was my recognition of a a low. Even if she uses a CGM now or you plan to get one later, it’s helpful to be able to identify your signs. In time she’ll be able to put words to them. Encourage that - even with technology it’s good to know how to go “old school.”
I don’t recall if it’s been suggested in this conversation but check out the book Think Like a Pancreas. The author, Gary Scheiner, has Type1 so he writes with the benefit of personal experience as well as theory. I know your hands are full so just wanted to suggest you check it out when you can. And while it’s educational I actually found it to be a fun read!

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We loop with my son (teenager though. maybe wait for omnipod 5). I advise JuiceBox podcast they talk about it. The main thing with looping or any other methods is the right background basal. Also meals with 50g or less carbs is the easiest to go to avoid roller coasters.
Waiting for viacyte to finally develop the pouch with beta cells.

15

(Just read your questions but haven’t read other people’s comments.)

  1. Ask your diabetes team about the Cake Mate cake decorating gel “trick.” Cake Mate cake decorating gel is sold in small tubes in the baking aisle of most supermarkets. We were told we could squeeze the gel between her gum and inner cheek and it will be absorbed into the body and raise BG. (Make sure to turn her on her side before you do this bc you don’t want her to choke on it.) I don’t know how much of the tube you would have to use (probably different amounts depending on her blood sugar level, but that’s a question you can ask your team.
  2. Ketones are produced when there’s not enough insulin in the body. Think “needs more insulin” instead of “high blood sugar.” Also, try to flush ketones from the body with water.
  3. It’s the quantity of ketones (not the length of time) which makes them dangerous. Moderate to large ketones can progress to DKA. Trace or small ketones aren’t as dangerous. Ideally, of course, you don’t want any ketones.
  4. From what I know, most people with 2 year olds dose afterward, but do so based on blood sugar before the meal. They dose afterward bc 2 year old may not consume all the carbs in the meal, and dosing beforehand could cause a low.
  5. After you treat a low BG, wait 10-15 minutes until BG is back in target range, then give her a little bit of protein. The protein will help keep BG from plummeting again.
  6. Our diabetes team gave us a log sheet on which we would record BG, food, # carbs, and insulin doses throughout the day. There was a section where we could add notes too. You’re right: It’s War and Peace.
  7. If 15 g. of carbs sends her through the roof, then 15 g. is too much for a free snack. Here’s a list of snacks I like from Seattle Children’s Hospital: https://www.seattlechildrens.org/globalassets/documents/for-patients-and-families/pfe/pe1762.pdf
  8. Not sure if I’m “allowed” to be writing this, but there are many private groups in Facebook for parents of children with T1D. I’m not a big Facebook user, but those groups have been a godsend for many people.
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We were in the exact same boat a few years ago when our 3 yr old daughter was diagnosed. We had to (and still have to) sit our daughter up at night and let her know several times that she’s low and that she needs to have some juice until she’s cognizant enough to drink. It helped us to give her juice with a straw or else it would just spill everywhere, and she’s finally learned now to drink it instinctively in her sleep when we put the straw to her lips. A couple of sips of juice at night will usually do the trick for us. You can also try the cake gel trick that someone else mentioned, Sometimes a couple of gummy vitamins or 3 or 4 fruit snacks during the day works well for a low too, but we rarely ever give more than 3-10 carbs since she’s so little. I will also use fast acting carbs at the beginning of a meal (applesauce, fruit, gummies) if she is dropping fast before she eats and I know that the food will almost always “catch the low” once she starts eating so I don’t usually re-calculate. It’s so hard not to stress about the ups and downs at first, and it does feel like a novel everyday in the beginning. I remember the emotional roller coaster we were on that first year but it does get easier and less stressful (I promise!). If you ever need more tips or just some encouragement from a family who is a few steps ahead of you, please feel free to send us a message anytime!

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@srozelle thank you! I didn’t realize I could search old threads. We’re trying to figure out what her “free” carbs are now - tricky stuff!

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@rachelcap tried 2oz of milk instead of juice and brought her up perfectly and still in range. Thank you - I feel silly for not trying milk in the first place! Yes it is very isolating - no one really seems to understand just what it takes to make it through each day! I will take you up on a chat when we catch our breath. Waiting for a covid test with our 8 year old now - can’t seem to catch a break!

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Just an update - got the gel icing, Think Like a Pancreas, and a BG journal. Definitely feeling a bit more capable and organized. Not to be sappy but really appreciate all the kind words and advice. It helps to not feel so alone. We’re lucky to have great family - but I can’t seem to explain to everyone that we’re not just okay and that’s that. It’s a lot of work to be okay! We had three days were she stayed 50% in range! Which for us seems like a miracle. And somehow Halloween ended up being her best in-range day yet. Hope you are all having good days too.

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Oh I’m so glad that worked for you!! Don’t feel silly - different things work for different kiddos for sure! Good luck on that Covid test for your other kid! Never a dull moment, huh?!! (Our T1D is the youngest of 5 kids so that totally resonates with me, too!)