Newly Diagnosed 5yo- Exhausted Parents

You guys are seriously the best. I hope I never have to ask, but knowing that you are all so helpful brings a little more confidence.

I hope one day I can extend my hand and pay it forward as well.

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This is what makes FUD like no other diabetes forum that I’ve been a part of. We all have been helped so much by each other, and everything I have learned over the past five years has been mostly because of FUD. I’m glad we decided to build this forum. We all learn here and then pass that knowledge on to others here. It’s a wonderful circle of education that occurs here.

We also don’t judge. What you decide if best for your family is A-ok… In the world of diabetes there are a million questions and a billion answers. Much of diabetes is just figuring out what works for you and your family and then just being at peace with that. The only person I compare myself with is me… How can i improve what I’m already doing? Can i be doing something different, better or more streamlined to still meet or exceed my goals… But still maintain my goals and not change them to someone else’s goals.

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I’ve read the linked topic a few times, but I was also somewhat preoccupied yesterday with birthday festivities and in laws.

From my basic understanding, if I recall correctly- the article states that the brain has a constant supply of glucose, even when BG levels are low, and that supply can remain constant at lower levels for longer than most people realize, in effect reducing any immediate harmful effects.

This is good to know, because for me right now, every passing minute outside of his range, high or low, I’m fearful of immediate and long term effects on his body.

Obviously as stated, this shouldn’t be used as a free pass to allow levels to maintain at extremes for days on end, but it’s also really cool to know that our bodies have sneaky ways of keeping things in check.

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@Dusty_19 - that’s what it’s all about. Collectively we help each other out and pay it forward. We were all there once, lost in a sea of information with limited direction from the medical community other than “you’ll be fine.”

BTW, IMHO this (FUD) is THE BEST source of non-medically authorized information on Diabetes on the web. I have learned more here in just a few years than I have learned in the previous 20 - and I never once felt like I was being talked down to because of my lack of knowledge.

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When my BG drops to 70 mg/dL my wife can tell that I’m subtly impaired. At 60 I’m getting stupid and if I tried to drive a car the impairment would be comparable to alcohol intoxication. Be conservative about the conclusions you draw from reading a paper on GLUT3.

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The points I took from it are those eloquently pointed out by @Eric in the original post. It’s just nice learning that the brain has this constant supply of glucose. Additionally, knowing that there is no real scientific evidence linking lows to mental issues, lack of mental accuity, brain damage or becoming mentally stunted. There are very real threats of hypos and those should always be taken seriously…but being overly afraid of them is offset by the knowledge that the brain does have this constant supply. So, having that knowledge and working toward always making sure Liam is “in and out quickly” (for both highs and lows), that’s eliminated my personal “fear of lows”. That’s what I take from the GLUT3 enzyme knowledge.

My Endo preaches a “gloom and doom” view of lows…I don’t share that based on what I now know.

As @Eric put it

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Absolutely. I never take in any information as an “end all be all” and understand that there is no one single constant when dealing with the human body. The more information at my disposal, the better informed I can be when evaluating my choices.

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I imagine it is more of a CYA liability issue. My doc focuses on lows to. We talk about it at every appointment like clock work.

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Yes, that’s exactly what it is…they don’t care about hyperglycemia at all because that’s an issue they won’t have to deal with in the future (at least for those of us who have Endos for our kids). When they’re adults and start encountering all the “opathies” (neuropathy, retinapathy, etc.,) that come from hypers, they no longer see the Endo that promoted them.

Finding that happy medium is important…no one wants to be low, but realizing it’s inevitible, just getting in and out as soon as possible is all we can do. Same with the highs.

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No haha not at all. I actually heard that in one of the Juicebox Podcast episodes and though it was somewhat funny since it did seem like they treat it as “here- follow this generic guideline we drew up with liability in mind and you’ll be ok for a while”.

I can 100% relate to this. I was in such agony and mental fog for the first few days that I would stand in front of his paper log with a pen in one hand and my phone calculator in the other just staring at numbers and doing the same math over and over, second guessing everything I was doing. I kept thinking over and over “Is this real? Is this our reality? Am I going to be able to handle this?”. Once I had the mental energy to actually google some stuff, I realized there was real people out there who have done this before and they could possibly help alleviate some of this anguish I was feeling. As I started reading and relating to my situation, I started to see the trends. I told my wife some stuff I thought would happen since his numbers were consistently high and like you said, as soon as we submitted his logs, what I assumed came to fruition. I started to see that they’re just slowly “fine tuning” him week by week.

This is where I’m waiting to see how things change for us. Being able to see that information I think will help us not be so scared constantly. Not knowing what he has in his system still, or where he’s heading, how fast he’s getting there, or how his body is reacting to activity/food, is literally just like guessing every 3 hours. Unfortunately he’s constantly high, even after we correct him. He’s normally in the 200-300 range all day and night. But there have been times where he will be 330 and two hours later he’s 92! We had no idea until we decided to check him an hour early (thank god).

Yes it’s exhausting. We’re all in this together! Please PM me if you want to talk more. It seems that our kids maybe be very similar from what I have read in your posts.

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Also, this goes out to both of you, @diabeatit2020 and @Dusty_19 . It’s never too early to start testing your children to get them used to being able to identify when they are low/high. My son Liam is 99.995% accurate on lows…when the CGM reads 150 and he says he’s low, 9.995 times out of 10, he’s correct and the CGM is wrong. I’ve spent the past 3 years asking him everytime he feels low, or high…“how does it feel?” “What does being low make you feel like?” Get them actively thinking about how their hypo or hyper BGs make their bodies feel. Being hypo and hyper - alert, are important skills that all our kids can hone and take with them into adulthood which will help them when they have no tech around.

Whenever you both get on the CGM, you can play the game I’ve played with Liam for years now…“Can you beat the Dexcom?” – aka - can you guess what your BG is and be closer than the number that’s on the CGM. If you win, you win some prize. If you don’t win, no biggie! (another @Eric creation / game)

Even before you guys get the tech, I would say it’s not too early (they are old enough now) to start testing them! When you do BG checks, and you see a 300 or a 50 ask them how they feel. What’s going on in their bodies? Are they tired? Shaky? Thirsty? Hungry? Do they feel anxious, etc., Doing that over and over again will really help them hone those skills of hyper/hypo alertness.

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I’m literally dealing with this right this second. My son has been 300+ since he woke up. He went to a friends house with his mom and played for 3 hours. Just got home and he’s STILL 328 after a correction and dose for a meal 2 hours ago.

He just ate 3 scrambled eggs with 2oz almond milk, a cheese stick, and 3 small pickle spears.

He suddenly went from being sweet, well mannered, to rolling around on the floor whining and complaining that he wants chocolate. That slowly turned into him threatening to throw his toys in the garbage and run away and “NEVER EAT ANYTHING AGAIN” as he said…

We noticed when he’s high, especially for extended periods of time, he gets very emotional and aggressive towards us.

It’s sucks. We’re stuck with the “every 3 hour” correction dose, so since he’s been demanding food all day, it keeps prolonging his corrections and whenever we only dose him for his food, my wife never does pre bolus. She always waits until after he’s eaten because she hates having to fight him to do it before hand.

Anyways, we can always see when he’s way out of whack, and I’ve started asking him how he’s feeling, if his tummy hurts, if he’s hungry, tired, mad, sad etc.

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I just couldn’t tolerate it and at some point I thew that mandate into the trash can and did what I felt I needed too to get the BGs down. Not saying be like me…but I couldn’t stand it any longer and just bolused until he came down (tracked insulin so I knew how much correction I’d need on the way down).

Pre-bolusing is one of the most critical things diabetics can do. It’s not something that’s required in ALL situations (such as a low GI food sich as pizza/pasta), but for mid to high GI foods that garner an immediate response in the digestive system, it’s critical that the insulin have time to get into the system before the food so that it can do it’s job of letting the glucose into the cells. Having no insulin in the blood stream results in those seriously high and prolonged BG levels. I would try to get your wife to understand the importance in pre-bolusing.

I do understand the reservations with kids our kids ages being finicky eaters, etc., but we nearly always pre-bolus and if he ends up not eating what we had planned, we substitute those carbs with some other carbs.

You’ll find pre-bolusing will fix many of the prolonged high BG issues. We usually pre-bolus 15 minutes before Liam eats, for every meal (except low GI foods that take a few hours to even begin digestion…for those, we hold off on bolusing at all until later when the BGs start to rise).

It is sad to see, but not being diabetic myself it’s just hard to predict what it may make me feel like to be high for prolonged periods of time. I’ve spoken with quite a few parents who express the same outward symptoms when their kids are high. The most frequent low symptom I’ve witnessed and heard other parents express is lethargy…laying their heads down and starting to sleep is a pretty sure sign of low for Liam.

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The nurse emailed last night and said to lower his ratio from 40:1 to 36:1 (carb to insulin ratio). Apparently they’re going by 10% increments now.

The hard part is my wife got my son used to taking his shot after he eats. Now it’s like pulling teeth to try and pre bolus him.

She’s ok with him running high right now, and I’m not. She understands pre bolusing and agrees with it, but she’s also still grieving in her own way with guilt, and just doesn’t have the willpower to fight him constantly.

I keep explaining to her that from the minute he wakes up, by allowing him to eat for 30 minutes before he takes his shot, we’re guaranteeing that his BG is going to skyrocket before the insulin can start working.

My son also HATES me giving the shots. He will only let mom do it. He’s let me do it a handful of times, but will often literally ball up into the fetal position and run away saying “I want mom, I want mom!” if I’m holding his insulin pen

It’s going to be an uphill battle for me right now. One day at a time, I’m slowly trying to change what we were taught when we left the hospital.

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This is why, in my house, I’m the main caregiver for Liam. :slight_smile: My wife and I bumped heads in a similar fashion. I’m lucky that I am 100% virtually working from home right now and Liam is 100% virtually learning from home. When I did have to go into the office, my wife knew what to do, she just did it her own way…which doesn’t align with the way I do things, but she did her best. I’m OCD about these things so tracking, monitoring, caring and doing 100% of everything (including looking at his BGs all day) doesn’t bother me, in fact it motivates me and makes me happy to see how well he’s doing.

I think you’ll all do much better with pump…less shots. With the Omnipod, for instance, we only have to do 1 shot every 3 days + 8 hours. (80 total hours).

Yes, one day at a time and I would recommend building in rewards into your management with him so he’s incentivized to let you get involved more. It’s critical that you get involved since it sounds like you’re more OCD about it, like me, and you’d do a lot of things to really tighten down those BGs that your wife may not. (This is assuming you guys even WANT to be as OCD as I am. lol. Everyone has different goals! Quality of life is important among them!)

Doing great!!!

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Just making sure, but I assume you guys are using a 4mm needle?

There are some things that can help “distract” the nerve sensation at the site of the injection.

www.amazon.com/Bionix-Health-Shotblocker-Relief

www.amazon.com/Buzzy-Mini-Personal-Striped-injections

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Just me, but you have time to get things dialed in. Right now everyone is going through an adjustment period(mom, dad, kiddo). I wouldn’t be too worried about it. You’ll get there eventually. You got time.

Good thing is you know where you eventually need to get to.

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He’s fighting us on using his thighs. Does anyone have any tips on helping him not be so afraid? We were taught to pinch a “fold” of skin and inject into the fold. Maybe our technique sucks?

He constantly wants his triceps. He has let us do his thighs multiple times, but the other night he flipped out and said it hurt super bad and now he’s horrified.

I explained we can do his stomach too, but he screams with horror when I even bring it up (I can’t blame him, I am not fond of needles myself, much less imaging one poking my stomach).

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Yes we are using the standard 4mm that came from the hospital. I’ve done a handful of empty needles in my thighs and arms to show him it doesn’t hurt.

I did speak with someone who said his son couldn’t stand the gauge? We’re using a 32G right now, he said a 33G made a huge difference. Seems microscopic to me, but may be worth a try I suppose.

I will also look into those shot blockers

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I agree. I keep trying to remind myself this is a marathon, not a sprint.

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