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!