My 8 year old son was diagnosed two months ago. And he is finally feeling noticibly good. The last week + he has been having several low blood sugar episodes. A couple at 2.7mmol/l (48 mg/dl) but most in the upper 3’s (64ish) so we halved his insulin this week 1:30. And it’s been okay as we have been able to watch him and give him sugar to bring him back up. And I’ve gone to school this week and hung around just to make sure everything went okay.
But the thing is, he doesn’t feel the lows. And this baffles me. He even will be jumping around when he’s in the 3’s. Today I didn’t go to school and wondered if he ate his granola bar before gym and recess, 45 minutes of activity. I got my answer when he came in from recess and his Dexcom reconnected with his iPod. 2.2 mmol/l (39.6). We live 15 minutes from the school and this number terrifies me. Do I drive in? Do I call? Which I did, and his teacher is amazing, but I feel like I’m invading her territory. Which I know is dumb, since all I want to do is make sure he stays alive!
His teacher treated him. But, he didn’t feel it. I’m sure he wasn’t as low as the Dexcom said today, but this last weekend he was lower ( in the 2’s) than the Dexcom according to the glucometer and said, I feel a little tired.
His nurse said his honeymoon phase is kicking in and it isn’t abnormal for kids to not feel the lows during this time. I can’t find any info online about that. Has anyone else experienced this?
Maybe the age has something to do with the awareness of the lows. Not all diabetics are ‘aware’ as they call it of blood sugar lows. I do understand your feelings of course. In terms of his glucose readings, you can also get the readings to show on your phone as well, so when he’s having a low you will also know based on your phone telling you what his readings are, and then you can contact him or the school nurse perhaps to let him know. He should always carry lifesavers or glucose tablets on her. He should be able to eat at anytime in school that he needs to as well as test himself. The nurse should have all of his supplies on hand also. You should probably look into getting her readings to show up on your phone as well. He should probably not be exercising when he is low. He should definitely not be exercising when he is high either. Gym or P.E. should definitely accommodate him according to what her readings are. I remember when I first got diabetes, I did not take much insulin at first, and most of the times my blood sugar was very normal. I suffer from lows still from time to time. I usually get highs at nighttime when I’m sleeping.
Do you have a 504 plan in place for him? Don’t hesitate to call the teacher in those sort of situations because his well being is at stake. Since he isn’t either old enough or experienced enough to deal with this by himself. I recommend you watch this video from a type 1 mom vlogger on how they are handling a situation very similar to yours.
Perhaps in these early days a higher target would be wise while at school. My daughter always liked to be 8-12 mmol at school, then when she was at home her control would be better. There are so many variables to worry about at school.
I’m sorry to hear about your son’s diagnosis. One of my children, Caleb, was diagnosed when he was three. He is now 16. It was very rare for him to feel lows when he was younger and even today he doesn’t feel a lot of them. When he was first diagnosed, he did not have a cgm, so we were always looking at him hoping there would be some sign that we could key into. There never really was. We did a LOT of fingersticks!
What grade is he in? 2nd or 3rd? He’s still so young and it’s all so new. I remember when 60s terrified me. We didn’t know what kind of 60 it was - flat, rising, dropping gradually or plummeting. I always envisioned the worst. And their activity is so erratic when they are younger - it’s hard to plan for recess, for example - will it be an all out game of tag, or a chill stroll absorbing the sun.
If you have routine checks, and staff that know to at least keep an eye out for unusual behavior, you can make this work and reduce your anxiety a little. I’ve been in the position of seeing a “LOW” reading on my phone and not really knowing what’s happening on the other end and who is aware of it. The only issues we had that were concerning is when we had staff that was not doing what was agreed to - a nurse didn’t confirm his blood sugar before going on the bus and he was 45 - ack - things like that. If the plan was followed, things worked - not without intervention, of course, but he was safe.
When Caleb was in 3rd grade, there was a phone installed in his classroom that he could reach and he would call me when he checked his bg - that would be a post breakfast check, prelunch, pre-dismissal and whenever else he needed to. He had enough experience under his belt that he was capable of doing that. Toward the end of fourth grade he started texting me instead of calling - much more discreet.
This may be something you want to work towards. But for now, it’s okay to rely on the teacher. I agree with Firenza wholeheartedly about a 504 plan. I personally think it’s imperative to define expectations and roles and advocate for your son’s rights. It can feel like you are imposing, but you are not - your son has needs that must be accommodated. Those around him should want to keep him safe and agree to reasonable practices to accomplish that.
It’s interesting to hear about your blood sugar levels. That’s what I feel like his body is trying to do right now, push his levels into normal range. But that also brings on the concern that maybe he has too much injected insulin and that will work against him; especially at night. I checked him so many times last night because we haven’t changed his Lantus and he is riding lower. He was in the 4’s most of the night last night. I gave him a yogurt tube at one point just to give some buffer, but it was like I didn’t give him anything.
I do have the share app on my phone. That’s how I knew his numbers were dropping. But he leaves his ipod in the classroom so when he is at recess, gym or another classroom I don’t know what is happening until he comes back in and reconnects.
Wow, she is amazing. Thank you for that video. Casey is not at the point of managing himself, he just isn’t really worried about it. Which I am happy about, but at the same time really want him to be aware. When he was high all the time the first month he was constantly poking his finger now he just feels good and doesn’t think about it. I’m having a hard time motivating him to think about the lows and to check his ipod before certain activities. Maybe getting him a phone instead of an ipod so we can text him is the way to go.
There is not a 504 plan here in Alberta, but the government did just recently institute policies for kids with diabetes. Truthfully, our school was doing everything they advocated for already. They have been really wonderful and supportive. Every single teacher asks how my son is doing and don’t even bat an eye when I’m lurking in the hallways. So, I really have no reason to feel anxious about calling when I do. I think in the back of my head I just don’t want to wear his teacher out with the demands of my child’s diabetes.
I like that idea. That would make me feel more comfortable. His body is fighting us that idea right now. He dropped from 15 down to 4.4 mmol/L on Wednesday in an hour after the gym/recess combo. Why?
I was saying to my husband, I just want a set of rules in place that when we do one thing we get a known response for it instead of the roller coaster guessing game.
I’ve been reading a lot about Caleb! You’re information about managing his diabetes has been really helpful for me. I didn’t realize it was rare for Caleb to feel lows. Casey felt lows the first month, but they weren’t genuine lows, he was in the 5’s or upper 4’s. But I assumed that was because he was riding so high his body didn’t like the normal ranges anymore.
Casey is in grade 2. Last week when the Dexcom said for the first time he was 2.7 mmol with an angled down arrow I called the school and they brought him in from recess and treated him and told me what his numbers were. When I got off the phone I cried. And then I set to work trying to figure out why he wasn’t hearing his Dexcom alerts.
There really isn’t a set plan for how to handle him yet. I would say because it’s new and constantly changing. He was high the first month and now it’s only been since last week that his blood sugar is dropping and gets lower every day and average. Everything is new again on how to manage it for the school and us. I’ve been reading every day since his diagnosis on how try and handle his diabetes and I just think, how can I expect his teacher to know these things? Especially when she has other special needs children in her class. I do have an emergency low kit in his classroom and the office with a fantastic and simple flow chart I found on how to treat lows.
I think I need to gently push Casey in the direction of self care even when he feels good.
Definitely. Notify the doctor as well as your concerns, and they can tell you how to adjust the dosage. Especially with a new diagnosis. You have to get it right first. Cheese and crackers they always used to tell me before bed. It’s a balance with eating. You have to have enough fat, protein, carbs all together. About 10% of everything everytime he eats should be protein, I recall that as well. Granola bars work well too. Don’t forget with lows you must use something fast acting like fructose in juice or fruit, milk is slower acting in terms of raising the sugar. And he should check his blood sugar again 15 minutes after he corrects his blood sugar with eating food, to make sure it worked. Balance, it’s tough but it’s the key. Schedules also, a schedule that is the same everyday may help to determine more easily when something is not right. I know it’s not easy, but it’s manageable. Very manageable. Also, the pattern of what her blood sugars should be determined; for instance if they’re 180 before bed or 210 before bed but they wake up 90. So you wouldn’t need to adjust with any insulin because it will normal out by the time he wakes up. And also with gym, the exercise would drop his sugar so he should have a snack something to eat after gym. And should definitely test before gym. You’ll get the schedule down, but you need the people around him to understand as well because of his age of course. The 504 plan should definitely be done.
Yes! This can definitely happen - if bg is maintained high even for a short period, a lower in-range number can feel low. Caleb will also feel low if a bg is dropping quickly - he may not actually be low yet, or even get to low, but the drop can give him the same sensation.
Hugs. I’ve done that more than once. There’s a feeling of helplessness about not being right there to help.
As you learn more about how to manage Casey, you will be able to provide simplified instruction to the teacher. Is it a lot for a teacher to understand, no doubt, but he/she doesn’t have to know every nuance, just enough to keep Casey safe and in a respectable range.
It’s a delicate balance. It’s still so new and a lot for him to process and adjust to. Dexcom can be a nuisance. He probably just wants to be a kid and not have to deal with it - at least sometimes. I found dealing with one thing at a time and allowing Caleb enough time to really master something before introducing something else was really important.
I was diagnosed at 3 years of age and started on insulin immediately, I had hypo symptoms straight away which my mother handled by reducing the amount of quick acting insulin needed. Your sons honeymoon period maybe causing the hypo unawareness, however he may have something else causing it, such as something blocking his adrenal response? Like other medications etc. I guess the best thing would be to discuss this with an endocrinologist, as they also deal with other hormones and not just insulin.
I can’t tell you how much I hope his adrenal glands are okay. They’ve been on the back of my mind a bit as he has gone through periods of really craving salt. We see the endocrinologist for the first time on Friday. I’ll put this in my list of questions.
His blood sugars are such a crazy roller coaster. I don’t know if this is normal forevermore or if his pancreas is sporadic in its working or not working during the honeymoon. We dropped his insulin carb ratio because of the lows and that made a small difference for a couple days but now he’s gone high the last 3-4 days. And also rising after he goes to bed, and hangs out at 15 mmol/L (270) for a few hours.
His body is like a bad boyfriend who plays mind games with you.
That about sums up my diabetes experience. 95% of the time I will drop 50 mg/dl overnight (basal rate is perfect during the day) so if my bg is 120 or lower before bed then I need a snack but often the snack that worked last night shoots me up and I end up having to correct. If diabetes just cooperated few of us would have anything to worry about and our diabetes care would be easy peasy.
Things will settle down eventually though. I’ll take those little idiosyncrasies over how it was when I was a kid and going to sleep was the most dangerous thing I could possibly do.
If you want to make it easier on yourself, reduce your variables, you could give him less carbohydrate and thus less quick acting insulin, give him meals like chicken and salad with cheese and maybe a cracker, this would require very little insulin, would fill him, give him nutrients and far less swings in his BG. This is also good for working out his background insulin. Even if you don’t want to keep this kind of diet long term, you could try it just for awhile perhaps while your going through this difficult time.
We aren’t a really high carb family most of the time. And he has made himself less so by not wanting sandwiches. It was the one thing I complained to his diabetes nurse about after the first week that I felt like I was just cramming the carbs down him and she then taught us the carb ratios to insulin and that helped. But today, he is only getting .5 units for lunch and truthfully I had to throw in a couple skittles to bring his lunch up to 15 carbs.
I’ve read about a couple parents that did low carb and their success. It might be something he wants to do as he gets older, but for now he’s only 8 and I want him to enjoy life considering everything that has happened lately. Yesterday a parent brought in cookies which he was happy to wait and eat when he got home and I let him have it for his dessert.
Also, when we are outside playing in the snow, we are finding we have to constantly feed him granola bars or skittles to keep his blood sugar up. That’s really different than how we used to do it. Which was we’d give them nothing while we played. LOL. And at school he has gym and recess back to back, and he needs carbs then. He dropped from 15 mmol all the way to 4.7 mmol in that 45 minute amount of time last week. I don’t know how you keep that from happening without giving carbs.
I’m not brave enough to go low carb with him at this age. But as he ages and takes more control of his own life it may happen and I’ll happily support him.
This is actually a really common reaction to being outside in cold weather and yeah you basically just have to watch bg’s carefully and treat accordingly.
You dont just ban carbs , that would be insanity. Of course you give sugar etc for lows. You just give him a diet that requires no quick acting until you stabilise him and slowly bring it in. Too many people have slogans now and its madness in itself. Im giving you advice and good advice, Insulin is a VERY dangerous substance and it needs to be treated with respect. I want the best for you and I hope you understand what I’m saying. I have expience with this as a toddler, child, teenager, adult and your sons lows concern me because I know first hand where this goes.
I’m sorry, I think I must have unintentionally offended you. I didn’t mean to and I agree in a lot of ways. Just trying to explain the jumbled concerns I have may have sounded like I was discounting your advice. We are only two months in and I’m sure it will become more familiar and clear how to handle his blood sugar as it changes with stress, growth etc.
Hey Onbelay, I know exactly where you are coming from. My daughter is also 8 years old but was diagnosed a 2 and half years ago. Like her, your son will learn to identify the symptoms. My daughter’s big tell tale sign are the jaundice bags under her eyes. Good for you on getting the Dexcom so soon. We went 9 months without it. Make sure you are pricking and testing his lows. He may still be good above 4 or even 5.
You are lucky to have a teacher who will help treat lows. My daughter’s teacher didn’t do much for her last year. She missed a lot of school going down to the office for testing and such. She had a bud with her of course. This year her teacher has been incredible. Missed close to zero class time. Plus Emma has been taking on alot of the responsibility of correcting both highs and lows. Keep in mind also you could still be in the honeymoon period. You’ll learn what foods do what and insulin to carb ratios. Best of luck. Message me anytime. This is a fantastic place to be. Great people here who like to help.
