How does he feel

Parents
1

Hi there!
Our 2 year old son was diagnosed with T1 in April. We are slowly settling in, getting the hang of things, but I’d really like to know what he’s feeling, since he can’t really tell me yet. He’s a very smart little boy, but still only 2. I’d like to know just what it feels like for him to be high. He seems to get so angry and aggressive, he was never this way before, he was always happy no matter what. It makes me feel so sad and guilty that we aren’t able to control his BG all the time. We have always pretty much followed a low carb diet, due to our oldest son having fructose malabsorption, so not eating a ton of bad carbs is better for us, but now I don’t know if it’s better for our T1 2 year old. How many carbs does he need per meal? AAH I have so many questions. Is he just being a typical two year old, or is it the diabetes? Have any of you attempted any natural ways to try to keep the BG at a more stable level. Is the pump better for keeping Bg more stable?? I could go on and on but I guess I’ll start with these.

Thanks

2

sushi,
I feel for you, and I know what a parent goes through when a child [or grandchild] isn’t well and no matter what we do things just don’t work as we would hope. And BG level may bounce all over the place even when we eat properly, and medicate perfectly based on our activities; I’m in my 59th year with T1D and still learning and working things out. I’m still learning about diabetes and you’ll continue to learn too, bit by bit. soon you will be teaching me something new.

What does he feel? I can only guess, but based on my experiences, that when he “seems to get so angry and aggressive”, that his blood sugar level may be dropping and he needs some carbohydrate. I’m an “easy going, quiet guy” and occasionally I may snap at someone and appear angry [even if I don’t know I’m sounding angry, and my wife, children or grandkids will immediately bring me some OJ with the order “drink” and hand me my meter with the additional order for me to test.

A suggestion, when your son acts out of character try to do a blood test even though you don’t want to be poking a hole in his tiny fingers too often. You will soon learn patterns and may not need to test every time he is acting up. Just based on the activity level of any 2 year old, I suspect that he is burning up many more calories and carbs than you imagine - that is one reason I suspect that he is “low”.

I’m not a medical doctor, but … As for what he is eating, a good nutritionist may be able to guide you. I really do not agree with extremely “low carb” diets, but rather a well balanced diet with a careful eye on portion size; eat a normal, healthy diet just as the rest of your family may eat. Don’t stigmatize him with a lot of “you can’t” stuff about food and activities - as much as possible let him be a kid.

Best wishes for your family, stay in touch.

3

I agree with @Dennis

additionally, I always tell people that low blood sugar feels like a severe anxiety attack, high blood sugar feels like the flu. good luck you will both figure this out.

in my opinion, a T1 toddler needs carbs to fuel his high metabolism, or he will consume muscle mass. he needs the input from a pediatric nutrition specialist, but if I went by my son, a sold 30 grams per meal easy, sometimes more like 60 grams. IMO, please get in close contact with a pediatric CDE. I think it might be better to let him eat carbs till he’s done, then bolus for the amount he ate.

at 2 he has no idea but I must tell you that all those finger sticks and needles are very, very unpleasant. he’ll get used to the stress but kids reflect how you are reacting to this more than how they actually feel! If I may, without offending you, be a emotional rock so he can feel secure. I think that’s probably the most important thing.

no one is perfect. blood sugar is hard to control. it’s like trying to throw a quarter and have it land on it’s edge. my heart goes out to you. reach out if you need any support. there are many hundreds of years of t1 experience here.

4

My son was diagnosed a week before his 3rd birthday, so around the age of yours. He’s about a year in and still honeymooning. Even at that, we still have days when it’s hard to manage and, unfortunately, from those that I have talked with in similar situations, that’s pretty much the way it is with young children. And it will be that way for a while. My son is vegetarian, as such low-carb isn’t a healthy option for him, so I can’t necessarily speak to that. However, I will say that well-rounded diets focused on whole foods are always, in my opinion, a better choice as they ensure an adequate supply of fiber, micronutrients, etc.

As far as what your son feels, I’ve wondered the same about my own. He gets aggressive and sassy, flushed cheeks, spastic undirected energy when he’s high; contrarily, he is usually prone to tears and emotional when he gets low (60s-70s), or quiet, pale and lethargic when really low (50s). I recently had the flu and didn’t eat for two days, checked my bg after those two days out of curiosity just to see how it would compare up to my son and how he would feel, as I knew it would be low. It was 70; my son has gotten down to 49. So the severity of what they’re feeling physically is just staggering to me.

As far as the pump managing bg better: theoretically, yes it does according to our endocrinologist and the reps, blah, blah. In reality, I had better management and understanding of what was going on and fewer variables to screw it up – bent cannulas, defunct infusion sets, infusion placement problems, pump problems – when doing mdi. We’re fairly new to the pump, so maybe this will clear up over time and I’m certain that once he’s left the honeymoon period we’ll be thankful that we have the pump and cgm, but, for now, it’s frustrating.

All in all, I’d like to say that I have a clear picture of what my little one is going through and how best to help him, but the truth is that it’s still all so confusing and I don’t feel like I get solid, dependable, trustworthy answers, even from our endo.

All my best to you and your son–