Newly Diagnosed 5yo- Exhausted Parents

Hello all-

Fortunately, but unfortunately I have found myself here, searching through the forum looking for advice on caring after my newly diagnosed 5 year old son.

His birthday is tomorrow, and today marks day number 7 after being sent to the hospital with a 580+ BG from his doctor and being told he has T1.

Basically, from day 3 forward, I began furiously researching and reaching out to any and every community I could find for help and tips. My wife and I are determined to do everything we can for him to live a normal life and never let his diabetes hinder him or bring him down.

Currently, we are on the strict “Don’t Die” MDI rules from the hospital, filing out paper logs that we submit for review until our appointment with his Endo. The guidelines they have given us to follow are:

-Insulin Dosed with every meal containing carbs either 10-15 minutes before, and absolutely no later than 30 minutes after first bite, and ONLY dose amount to cover carbs.

-Correction dose every 3 hours from last given insulin dose if no carbohydrates have been consumed.

-Basil administered at 8pm every night. (Wife chose 8pm because that’s what they “suggested”)

My son is about 45 pounds, and loves to play dinosaurs around our house, run around outside at the park with his friends, and is a very hyper and active child- always looking for something to do or someone to play with him.

They set his ICR at 50:1 when we left the hospital and moved it down to 40:1 a few days ago after submitting our first weeks logs.

His basil is Lantus and it was 4 units when he left hospital, just moved up to 5 units after submitting first logs.

His rapid is Humalog.

They have his day target set at 150 and night set at 180.

His “correction factor” is 1 Unit lowers BG by 150mg/dL (written per doctor at the hospital).

We still have not seen an Endo. And have NO CGM.

Our problem right now is that he’s high after breakfast pretty much all day long (300-500) until he goes to bed, usually about an hour after basil injection, then he drops rapidly to (100-250).

The odd part is sometimes he will actually go up during the night (say from 200 at 10pm to 330 at 3am) even if his last meal is low carb/no carb and consumed around 8-9pm.

This morning was the first “low”-ish number we’ve had with him, and he was 92 at 8am when he woke up. Before that, he was 215 at 3am!

My wife and I are trying to gain an understanding of how his body is reacting to certain carbs/foods and also how the insulin is acting, PLUS how long it’s taking to kick in. It’s all just so so so hard without an BGM. We don’t want to finger stick him every 30 mins, but we’re also just going crazy wondering how how body is reacting and where he’s at vs where he’s headed.

It’s really stressful on this strict log from the doctor because we feel like we can’t “experiment” where we might need to due to having our logs reviewed. I know we’re only a week in, but I’m just a mess over not being able to monitor his BG levels on a CGM… I feel like we’re just throwing darts at a board every few hours when we check him. I’m also very very anxious at night, worried about lows while we’re asleep.

Also- we never really know how to “structure” his food before bed. He has always been a very high carb eater (eggo waffles for breakfast, pretzels and fruits for snacks, starchy carbs for lunch and had an obsession with macaroni and cheese for dinner for about a whole year…). He is a MAJOR grazer, hates eating set meals and foods.

For example, tonight at 8pm he was 299. Wife had already ordered pasta takeout to be delivered (he was 102 earlier) counted the carbs on the website and mentally prepared his meal. He hadn’t eaten for 3 hours so we asked if he would eat dinner (so we could correct him and dose him for the carbs). He said no, he wasn’t hungry.
So we waited 15 minutes. He decides he actually IS hungry, so we ask if he will eat the entire meal we laid out for him. He said no, he just wanted the fruit (go figure). So now we couldn’t pre bolus because we had no idea what he would actually eat! So he eats the fruit and we ask if he wants the rest of his dinner. He can’t decide.
Now the clock is ticking… it’s been 20 minutes since he’s started eating and he’s dragging his feet. Finally after 25 minutes we start really pushing for an answer and he decides he will take a few bites of his pasta. So we end up giving him 3 units for correction and his meal, but now it’s been a full 30 minutes so obviously we’re lagging the carbs and he’s going to spike to the moon before bed!!! Plus we know in an hour he’s going to be asking for a bedtime snack!

It’s become such a frustrating cycle of seeing these small train wrecks coming, and just not being able to avoid them, leaving us worried about extreme lows and highs, plus feeling horrible that he’s having to deal with all the new food “rules” he has to follow.

Any help or tips from you wonderful people are so greatly appreciated right now!


I suggest that you take things one step at a time…maybe start with breakfast.

I suggest that you decide on a breakfast e.g. 2 slices of toast with butter and 75g strawberries (or what ever suits you). You should keep this consistent. If your son’s BG goes over 180 then you increase the insulin for this meal. Try to give insulin based on his BG e.g. if he reads 180 before breakfast then wait 18mins (divide by 10) after giving his meal bolus before giving him his toast.


Hi @Dusty_19
This is the right place to get help.

What is the time-frame on this? If there is a long wait before you are able to get it, I can get you a CGM pretty quick.

It takes a little while to get comfortable with dosing. You are on day 7, so of course this is an adjustment. Eventually you will get more comfortable with giving him enough insulin to lower his BG, but not lower it too much. You will get more comfortable with knowing how much insulin to give him for meals, and for corrections.

But it does take time to learn. And one of the best things is to do frequent BG tests so you can learn it. Like you will give him insulin, check his BG after, and figure out you need to give him more. And then you might try a little more the next time, etc.

It takes time and persistence to learn it.

Let me know the CGM time-frame please.

Also, do you have 1/2 unit syringes or a 1/2 unit pen? Like, are you able to adjust in 1/2 unit increments, or are you using 1 unit increments.

If you are not using 1/2 unit increments, I can get you something for that very quickly too.


First of all, welcome to the best place on the interwebs that no one wants to be!! :slight_smile:

First things before I get into any guidance from my perspective (father to Liam, diagnosed at 2 who is now 7) is to… Get ready for it…BREATHE…

This is a tough time and there is no sugars coating it… It’s going to suck for a while until you get the rhythm down, learn what diabetes looks like in your son, and you can get some cool tech installed into him to help you sleep better and keep your sanity.

But better days are ahead and with the help of this fine community I know you can be where you want (and need) to be in no time.

So, let me now dissect some of what you’ve typed from one dad’s perspective to another. Take it for what it’s worth and keep in mind that I am no MD, so what I state to you is just my perspective from living with the management of my son over the past 5 years.

So, here goes.

Happy birthday to him!! The good news is that being diabetic doesn’t mean he’ll no longer be able to enjoy all those awesome birthday foods, ice creams and cakes, you just have to figure out how to bolus properly for those foods. That will take a lot of testing.

Some parents go low carb out of simplicity but we decided that we would not deprive our son in any way. He has 5 brothers and if they can eat anything, so should Liam be able too. We just have to continually figure out how to make that work. We don’t want him growing up with an unhealthy relationship with food due to us restricting them… So, we personally just figure out the right dosing by trial and error until we figure it out. Remember… He won’t remember the highs or lows but he will remember how special his birthdays were. :slight_smile:

Our son was also admitted to the hospital under similar circumstances and with similar BGs. Today, and for the past year, we have had a 5.7% A1C with 1 to 2% low/severe lows.

Good. Keep following the guidance of your medical team and do what the instruct. Find an Endo ASAP! Those logs are their way of helping you dial in your configurations…basal, bokus, I:C, ISF, etc. Listen to them as long as they are helping you get his BGs more in an acceptable range for more of the day and night. At some point you may feel, as I did, that they are moving too slowly or they become less responsive OR you just feel that you are ready to take the bull be the horns. When that happened to us, we stopped calling the hotline so much and just started making our own decisions and informing the Endo afterwards.

You will eventually get to the point where the Endo dictates nothing you do. I make all decisions for Liam and constantly tweak his settings… But you are at the crawling stage right now. Being on this site puts you at a huge advantage out the gate because there are a lot of very smart people here who have great management and who refuse to play the “woe is me” game. We believe it’s possible to live an UNLIMITED life despite diabetes and that is what i teach my son… The only difference between him and all other kids is that his pancreas doesn’t produce insulin so we have to give him that ourselves via MDI or pump.

That’s sounds advice that we follow with Liam. Just keep in mind; however, that some foods digest slower than others. Foods like pizza and pasta which are high in starch (low GI number) take longer to digest. Because of this you will want to watch out to not give too much Humolog up front which could cause his BGs to crash before the carbs actually kick in.

They advised this to prevent the “stacking” of insulin which could cause hypoglycemia. I would stick with this guidance until you are able to get your son on a CGM and i have that as my top priority.

Again, stick with the recommendations until get on a CGM and/or Pump and/or you find that its bad advice (Giving basal dose at night causing too many nighttime lows for instance). Let the medical staff work with you to get the right shots and times worked out.

My son loves to horseplay with his 5 brothers and is constantly on the move. Welcome to the adventure that lies ahead of you! :joy:

I still think that really high but let the Endo team work through this with you. They want to go slow to avoid hypos.

Every child is different and insulins work differently for every child but this may be A bit low for someone his size… But again work through dialing those in with the Endo team.

And I found that the Endo team was ok with my son being at this high BG all… Day… Long. They want to limit their liability and while hyperglycemia causes many severe “long term” issues, this isn’t their problem… They are only concerned with the lows. This is why i decided to take control for my son. It took a few months but i decided I wasn’t going to hurt his future self at the expense of his current self. With proper education and understanding it IS possible to “have your cake and eat it too.”

This most likely means the basal rate is too low. IF he has no carbs in his system and his bgs continue to rise it means basal is too low.

When my son was first diagnosed and before we had him on a CGM I never slept… Maybe two or three hours per night. I was so afraid that he was dying in his sleep that i felt compelled to check his BGs every 30 minutes. Getting on the CGM was the single best thing for us. It provided that peace of mind and allowed me to start sleeping more. Make that priority number one…CGM.

So this will be something you will figure out over time but generally we don’t like Liam eating any low GI food (pizzas and pastas) after 6PM or so to make sure we have 6 hours for then to be fully digested before bed (our bedtime, not his… So that we can get his BGs right before we go to sleep). If he is high we don’t give him anything carb related… We may give him a non carb food if he’s hungry before bed. If he is between 70 and 150 we usually give our son a Belvita cookie/sandwich which is a great snack for good stable nighttime BGs. This will take testing and figuring out what works for you and your son.

Welcome to one of the biggest joys (I say this sarcastically of course) of managing a young child with diabetes. It’s difficult to bolus for anything because they can decide they suddenly aren’t hungry for that anymore. I recommend having lots of carb options (even if they aren’t the healthiest options such as chips, cookies, etc) for those times where you have bolused for a food and he suddenly doesn’t want it. Having those less healthy options available means that at least he won’t go low.

Otherwise, you may find that waiting to bolus is the right decision. We went through a few periods where our son got so picky that we just waited until he ate whatever he was going to eat and THEN we bolused… It’s not the preferred way since it’s pretty much guarenteed that he will go high but it prevents the over bolusing… i prefer the first approach and that’s what we use regurarly… Bolus for the carbs you think he is going to eat… What’s planned for… Wait 15 minutes… Eat. If he doesn’t eat everything, figure out the carbs you have to make up and offer him something you know he will eat (even if it’s not the healthiest of options).

If you see these train wrecks coming then you are ahead of the curve. You are doing all the right things. Just go back to my very first recommendation… BREATHE. Your son will be ok and this phase will pass. It will be painful… Not going to make you think it’s not… But it will get better!!

Priorities right now should be:

  • Get an Endo!!
  • Get him equipped with a CGM as sooner than ASAP… Be asqueaky wheel of you have to be. That makes life easier for the whole family.
  • Continue working with the Endo team fort the next few weeks to drive those BGs down.
  • Many Endos make you wait a year before being able to get onto a pump but if they don’t, get think on a pump also once you have an understanding of MDI.
  • Ask questions here!!

You are doing great. Just taker one hour at a time and better days are coming!


It’s possible your son is reacting in a pretty typical 5 year old way to having any limitation he didn’t have before – before, he didn’t need to know in advance how many bites he’d take or tell people exactly what he planned to eat, now that is suddenly changing, so he’s trying to regain control by waffling. I also find this age kid just doesn’t know what they want from one minute to another, that is certainly the case for my 6 year old! Another approach, in addition to the good ones above, is the “fill the plate” method – you figure out a reasonable # carbs he can usually eat and bolus for it (allowing you to pre bolus), then he gets to figure out what fills the plate to reach that number. Basically he can choose whatever he likes to get to 30 carbs (or whatever number). Hopefully it could be fun for him to be put in charge of choosing. If he counts at all you can “count by tens” and just estimate things in ten carb chunks, or by ones. Pretzels are about 1 carb each as are some berries etc so those work nicely for little kids. It’ll probably require having some higher carb foods for backup that he definitely likes (fruits and dairy are good so it isn’t total junk) also some foods that are very low carb in case he hits his # and still hungry (nuts, cheese, beyond burgers, protein shakes are some of our go tos since our t1d kid is vegetarian). In the long term you might not cater to any childs eating preferences this much, but in the short term perhaps it’s more about making eating fun again, and giving him back some control. It has worked for our kids both for diabetes and for other food choice tasks like packing a lunchbox (using food categories you get to fill instead of carbs but same idea).


April 9th we have an appointment to talk to his Endo. No mention yet of anything otherwise.

We have 1/2 units on our pen thankfully.


PM me at any time. I’m happy to jump on the phone with you if you want to pick another parents brain or if you just want to vent.

You are doing great!


So this is your first appointment, right? In 15 days? Do you want a CGM?

Do you have an iPhone you could let your son use to transmit the readings? I don’t have a spare receiver. But I can get you the sensors and transmitter.


Sorry for the delayed response! I am so thankful for everything you guys have taken the time to write me. It seriously means so much. It’s so amazing to have such a great community of people helping each other out.

My wife had a rough time tonight convincing my son to allow us to rotate his basal injection to his thigh, and it ended up in tears for everyone.

I will read through and reply back to all ASAP!


I’m sorry for your son’s diagnosis.

It isn’t easy, but you and your family will learn together. There will be challenges, but it will get easier in the coming months and years. Take it one step at a time.

I’ll just say there has never been a better time to be diagnosed. Fortunately diabetes is one disease that responds very well to modern technology and modern insulin.

You got thisđź‘Š.


There is a lot to learn and a lot to take in - it sounds like you are doing great so far.

my daughter is 5 - this is what I use to treat lows under 70. The syringes allow a very accurate amount of glucose gel to be given and overnight it is fairly easy to give I sometimes just put a little into her cheek.

For lows 70-90 I usually give 2oz of 2% milk.

There are loads of other options and recommendations on the forum.

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Private Message me your mailing address if you want Dexcom supplies. They are free, of course. If you are in the U.S. it would take 2 days to get there.
(Internationally I think it might take up to 2 weeks to get there, it just depends on where you are.)


Welcome to the FUD family: we are here for you and your family.

I highly recommend Gary Scheiner’s book Think Like a Pancreas (3rd edition). Gary, who is T1D and a CDE, brings together research and his own experience to put diabetes into perspective and help with the nitty-gritty of day-to-day management.


Yes! Thank you @CatLady . There are quite a few really good books that are MUST READs while you proceed along this journey. Several posts have been created through the years here on FUD. Here is one and here’s another.

There are other recommendations also that you can search the forums for (use “book” as search term). The single most important thing that I did as a parent was EDUCATE myself…I read every book I thought relevant and was recommended by the amazing FUD members and it really opened up my eyes to the world of diabetes (the truths and the myths).

Also, listening to the old timers who have lived with diabetes for decades is critical…they will teach you what “books” and “doctors” won’t…but it will be valuable practical advice that is worth considering.

Also, we have our very own Crash Test Dummy - @Eric tests all things that people wonder about whether there is truth in a rumor or not. :smiley: He is our diabetic savant McGiver who tests things such as “does expired insulin work?” “what about insulin that’s expired for x years?” He’s a genius…many here are, but he’s our testing guru. :slight_smile:


Yes this is our first appointment. I would LOVE a CGM. We already have an older iPhone set aside for him so we can use it to monitor. I can’t figure out how to PM anyone in here unfortunately haha


Click on the person’s avatar and a box will open up with message as an option.



Thank you all so much for your help! I’m blown away at how much attention my post has gotten in such a short amount of time. I’m still slowly going over all the replies and trying to make notes and soak everything in.

I will also be making notes of all the books and starting to take that deep dive here shortly. Unlike my wife, I am a chronic researcher and will spend days/weeks/months on end researching things that I feel are beneficial. (She hates shopping with me because I’m always comparing and researching- says I ruin any and all spontaneity haha).

I just want to say again- you all have no idea how much this means to us. Just having someone to talk to right now is huge. Having great people come together and willing to listen and help a stranger like myself, it’s a blessing. Y’all are amazing.


I’m assuming since I am on mobile, that I’m not getting that option? Or maybe I’m “too new” to send PMs, I know some forums have new user restrictions. Either way I’m not getting the option with any user! I will try on desktop.


Actually you may not be seeing or yet due to permissions.