Newly Diagnosed 5yo- Exhausted Parents

Parenting a D-Child
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Yeah I ran into a huge issue tonight. I actually just tried waking him up to get him to drink 1/4 - 1/2 a juice box and he wouldn’t wake up.

He’s not super low, but he does sometimes go into these extremely deep sleeps where it’s almost
Impossible to get him up, and if you do, he’s pretty much sleepwalking and just completely irrational and ridiculous.

I managed to get him to stand up out of bed after me and my wife both were shaking him and rolling him around, but he started walking out of his room and then sat on the floor and started getting angry so we just carried him back to bed.

That raises a red flag for treating night time lows. I guess I will have to make sure I have ample supply of honey, or glucose gel on hand to rub on his gums in case this happens again…

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Yes. This is something that requires no chewing, just swallowing with saliva. Definitely worth having some on hand in case of emergencies. Also we keep Baqsimi for those real emergencies

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Baqsimi. Never heard of it-

Noted and bookmarked!

I’m off to bed now. I think a good 2 hours of sleep should suffice for tomorrow :roll_eyes:

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MUCH better option than the clunky Glucagon kit.

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Hey @Dusty_19, how are you and your kiddo holding up? I’m sorry to see about the vomiting. Please keep us posted. :slight_smile:

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It’s a shelf-stable glucagon given as a nasal spray. An injectable stable glucagon is Gvoke from Xeris. They were intended to give large “rescue” doses to save someone from a severe hypo, but the idea here is to give microdoses to raise the BG when someone is heading towards a hypo and they can’t or won’t eat carbs. http://www.bcchildrens.ca/endocrinology-diabetes-site/documents/minigluc.pdf

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Glucagon is generally just for emergencies. It’s like an Epi-pen. I would much rather eat a piece of cake than take glucagon. But if someone is unresponsive, glucagon is the way to go.

The Gvoke syringe (from Xeris Pharmaceuticals) also has a version for children. It is a lower dose. If you were to get a prescription for it, you would certainly want to get that version.

They have both an auto-injecting pen, and a syringe.

The problem with the auto-injector is that you can’t micro-dose. You are stuck taking/giving the whole amount. That’s fine for a big low where someone is unresponsive, you don’t want to play around with that, you want to bring them back up right away.

But for a low that is less severe, the ability to give a smaller amount is helpful.

It might be good to start simple, and then once you have more comfort with lows, you can start to consider the idea of taking less of the glucagon.

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I just woke up feeling like a bag of rocks…need a coffee glucagon!

I went to bed at 4am and got up at 6am to check him again and he was still 130 so I thankfully wife took over after that. He seems totally fine. She said he’s been his normal self all morning!

Myself and my 1 year old definitely have something though. We’re both congested and full of gross yellow/brown mucous.

I called the on call number they gave us for any emergencies or questions last night and he literally just told me (with a chuckle) “just check for ketones”. I was like ok well what about him going low after puking for 30 minutes straight? His reply was “…oh yeah, I guess that’s a possibility too…you will just have to monitor him every few hours or so and give him carbs if he’s too low.”

Wow thanks a lot Dr. Obvious :expressionless:

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Also, in the 5 years we’ve been on our diabetes journey with Liam, we’ve ever only used Glucagon ONCE and it didn’t even really help. lol. (when he was super sick and just wouldn’t come from a long low he was having). That’s the only time we’ve used any form of “medical” low treatment. Any other low is a great excuse to have something yummy…the quote here in FUD is “never waste a good low”. We don’t always use yummy things for lows (or potential lows)…we do use our share of sugar tablets…but many times we do give other yummy things (for instance, if Halloween has just passed and he’s got his big bucket of candy from trick-or-treating)… candy is a great way of getting that bucket empty over time.

When you get a CGM, you’ll be able to see the trend heading for a low and you’ll learn to see IOB and just know that it’s time to cut that low off, preemptively, before it ever happens.

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I know this thought is late in the thread, but your son may (might) possibly also be getting a slight burning sensation from the insulin when injected in certain areas in addition to not wanting to see the needle. Applying a cold pack for a few moments prior to injection will solve this problem in addition to deadening the nerve endings (pain at injection site). If your son chooses where to apply the cold pack, he’s consciously making a choice on where to inject even if he doesn’t actually do the injection and that will give him a small sense of control over the situation.

Super cranky when high happens to some adults too…just ask my wife…

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Are you keeping the pen in the refrigerator between injections? It might help to just keep it at room temperature, or allow it to warm up to room temperature before injecting it. It might be more comfortable for him.

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No it’s kept in our little “glucology” case that my wife bought to house all of his supplies.

I was wondering about that. I’ll see if he lets me try it next time!

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Oh you dear parents! There’s so much to learn. (Me: 65 yo teacher, T1 for 33 years, 115 lbs/5’5") My best advice to learn how your son responds to meds + food + exercise etc is to get a CGM. The DexCom may be best for you. I didn’t like the alarms that went off at 3:00am because even after I took care of the lows, my BG was still considered low for another 20 minutes, so the alarm kept at it. (I use the Libre 14-day now).

What I discovered was that I needed to take a small dose of my Humalog to counter the dawn effect, where my BG rises and rises dramatically, thus ruining my day.

Eventually you will learn which foods totally messes his BG. For me, it’s pasta and pizza, but if it’s whole wheat, the response is completely different. Potatoes= not good. Rice=much better. Good snacks are celery w/ peanut butter or apples or applesauce. The surprise factor for me to accommodate is the fat content. If there was a lot of fat in the meal, I might not see the rise for many hours later. But all that is just figuring what works for your son.

I hope the train wrecks stabilize for everyone soon. It may help if you try to keep one meal totally consistent (for me it’s breakfast which is steel cut oatmeal + a handful of frozen fruit + 1 tbs yogurt + 1 blue pkt) to eventually get a handle on how he responds. Or try an egg + whole wheat toast. For me, I do significantly better with whole grains. That might really help you too. Otherwise it was like a roller coaster.

I hope this helped.

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Thanks, @Dusty_19, I’m one of those people who’s minds takes in, processes, and then memorizes arcane information like the GLUT3 enzyme. It’s gotten so bad, I get accused regularly or making stuff up, even by family members…my daughter gave me a birthday card with an old man and a little girl at the beach and the old guy saying, “and that over there, that’s a Stick Out…because,well, it sticks out!” This, even though my delivery is authoritative and convincing. So, one night a couple of years from now at a party or evening out, someone’s going to mention how the brain uses a lot of glucose and I’m going to remember and regurgitate all of that GLUT3 stuff…only to have my wife and others look at me oddly, my daughter question my veracity, and a “friend” to say, “Tom, Where to you get this crap from?” Of course, I won’t remember the book citation!

Seriously, this is interesting information. Thank you all for the edumacation!

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Hello,

My experience and advice will likely be different than the rest of the crowd. I have 35 years of experience managing my blood sugar and usually end up with an a1c right around 5.

I think that in general the diabetes education is good for reaching a beginner to intermediate level of understanding. If possible, I highly recommend getting a dexcom system set up because it provides excellent feedback and eliminates dangers of hypoglycemia.

One of the biggest challenges with insulin dosing is figuring out the action curves. Lantus dosages last longer depending on how much is taken and do have a slight peak. Humalog stays in the system longer than advertised.

The next challenge is realizing that the blood sugar can go up on its own and that carbs can raise numbers in ways that aren’t consistent. As a rule, I’d recommend staying away from high fructose corn syrup at all costs.

Diet-wise, I have done well with dairy, proteins, vegetables, and fruits (although some like bananas raise the number more than others). Using a short-term insulin will cause the number to drop and require carbs so my carb consumption is more centered around number raising than planned dieting.

In my opinion…the biggest mistake with diabetic education is the neurosis surrounding hypoglycemia. Yes, it is unhealthy. However, it can be fixed within 10 minutes with a cup of juice and not lead to long term effects. I completed masters in math and computer science with straight As (while working) after countless low blood sugars over the years. Fortunately now the dexcom prevents that.

At first, 150 is probably a good target that is close enough to non-diabetic numbers. Over time though I shifted that number down and realized that the insulin worked better closer to 100-120 and the smaller required doses led to less lows with subtle corrections.

I haven’t read all the replies above but time of day is crucial. For me, between 9 pm and 2 am my insulin requirements drop to approximately 1/2 and between 3 am and 5 am they go up by 50%. Growth hormone and cortisol increase insulin resistance.

Regarding blood testing machines, Bayer Contour Next has been consistently the most accurate. Strips can be purchased online from Walmart and Amazon (I believe…although they went missing). This is more accurate than the Dexcom.

If you read this and am curious to find out more, I’m happy to continue the conversation either here or via other means. Diabetes is a pain the ass to deal with but with proper attention, will not affect one’s life. There are a number of top athletes in every sport with the condition. Over time, a baseline routine gets developed that makes things run much more smoothly.

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