Insulin levels

My six year old was officially diagnosed in September of this year. We caught him very early through trial net so his insulin dose is low. He does 1 unit of long acting in the morning and 1 unit to 40 grams of carbs for meal coverage. The really frustrating part is some days its like he doesn’t even have diabetes and we give no meal coverage insulin or correction insulin. For no reason, 2 days later he will be at 330-400 and stay all day.
The odd thing is on the good days when we don’t have to give meal time insulin we still have trouble with lows. His body drops to 60’s, sometimes 50’s by itself, no insulin.
Is that common in the honeymoon phase? It’s so all over the place it makes me crazy.

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Hi @sullivansb . Yes, this does sound line the honeymoon phase - the body has a mind of its own and contributes its own insulin with no rhyme or reason. I’ve been on insulin for nearly 60 years and don’t recall my experience from that far back. We didn’t even have BG meters until I was our of college!) so my parents may have had to watch for signs if I didn’t say something first about “feeling funny” or low. When I’m over 300 (that’s “my” number - your son’s may be different) no amount of insulin will bring new down until I’ve washed any ketones out of my system. Just a couple of 8oz glasses of water help get those numbers moving down, although it does take a few hours to see the start - how much your 6 year old needs may be different. In any case, check with your doctor about how to manage.
I don’t know that I can share any helpful tips other than to be vigilant and work with your doctor. Hopefully forum members who have taken this honeymoon themselves - or parents who have “chaperone” their small children - can give you some pointers.

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Sadly, yes. Totally normal for the honeymoon phase. Best advice we ever got (my daughter was diagnosed at 6, too; she’s 13 now) was to just follow the numbers. If he’s high, give insulin. Low, give carbs. Seeing a pattern of highs or lows for a few days? Call your endo/CDE for guidance. Eventually, you’ll be knowledgeable enough to make those adjustments yourself, but until then, lean on your medical team. That’s what they’re there for, and if they aren’t supportive, find someone who is.

And post here anytime. This group is beyond helpful and kind: it’s a real community. I’m sorry your son’s got T1D, but I’m awfully glad you’re here. :dove:

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Yes @sullivansb it sounds completely common. First of all welcome to Type One Nation. Yes he is making insulin for the time being and even if his blood sugar happens to be ok, he still has diabetes. Even if he doesn’t need insulin tomorrow, he still has diabetes. You are doing the right things, he needs insulin when his blood sugar is too high, and he needs carbs (sugar) when his blood sugar is too low. His insulin needs will probably change drastically this next year, but it is always the same thing.

The reason his blood sugar is low on days he doesn’t need insulin injections is because the artificial insulin he is injecting can actually last for days and if his body is also making insulin, well then his blood sugar will be too low.

As far as random high blood sugar goes, if I don’t have sufficient insulin my blood sugar will be 390 in an hour, or less. As far as variability, I consider myself an expert at using insulin with 40+ years experience, but I get numbers like 40mg/dl and 300+ mg/dl all the time.

I hope you have access to a great medical team and I am sure you are getting the picture: diabetes is managed at home. I urge you to get the book “Think like a Pancreas” it is filled with great information.

Oh my gosh that is literally what I am doing:)). I follow the numbers and I’m not giving insulin if its not needed. 2 weeks ago, we were doing meal coverage 3x a day and now, he’s perfect. The doctor is great. Sometimes I feel like its not normal because it’s all over the place. I feel better knowing it’s perfectly expected. How long did the honeymoon phase last? I almost feel like it would be easier to manage out of the honeymoon.

Thank you. So glad to hear this. I will look up that book. We named his pancreas Bob. We we have good/bad days we can get mad or happy at Bob. It helps his little 6 year old mind get the frustration out.

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That’s nice. Whatever works for you guys. If you haven’t already, the JDRF will send you a kit, called a Bag of Hope, filled with good stuff. You can click the resource tab at the top of the page or use this shortcut https://www.jdrf.org/t1d-resources/newly-diagnosed/children/

I already have one and its great. I just ordered the book off Amazon, Think like a pancreas

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I hear you. The honeymoon stage can be unbelievably frustrating.

You can search this site for “honeymoon” and you’ll find a ton of posts on the topic, but the bottom line is that it’s different for everyone. Our endo told us it’s usually a few months to a year, but definitely can be longer or shorter, too.

Some experienced posters will tell you they’ve had times when their pancreases started up again (always briefly, of course, before their immune systems shut production back down), so there is such a thing as a second, third, etc. honeymoon.

And I love your “Bob” idea — we have a stuffed animal that gets blamed for everything bad that happens in our house, and it’s a great way to express our frustrations without letting them get us down. :sunglasses:

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@wadawabbit Do you test for ketones or just just know through experience that when you are in the 300’s you have ketones?

Just curious if this is something that I should be checking for/aware of if I am very high for some reason.

Thanks!

I’ll check if I have DKA symptoms. I should always test for them if I’m that elevated (which is very rare) but I just assume I have them on board and get to work washing them out. I can generally clear them fairly quickly on my own so I’ll check a few times later, as my numbers are coming down, to confirm any are dropping. It’s not a practice I would recommend - I just know my body enough to be comfortable doing it that way.

@sullivansb another resource is Lily Diabetes. They will send your son a Coco the Monkey, off of Mickey Mouse Clubhouse, and she comes with a diabetic test kit. Lilly Insulin, Diabetes Products & Information | Lilly Diabetes My 8 year old daughter was diagnosed in June and we have been going through the honeymoon phase as well. I completely agree with you, the roller coaster ride is making me crazy!!! All we can do is strap ourselves in, keep our eyes on the numbers, and lean into the curves! I wish you, your son, and Bob the best of luck on this unexpected journey that we are all on. Feel free to reach out if you want a fellow newbie parent to vent and cry with. <3

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Greetings
Sorry to hear of your control challenges. I was diagnosed at age 11, in 1967.
As with your child, my first year was a rocky one. I was taking an oral med with my daily injections. (old school beef-pork insulin)
I regularly had lows, My pancreas was giving its last push.
I think you’ve called this correctly as the ‘honeymoon phase’.
If you haven’t already, I’d recommend a CGM. It can alert you early of up or down trends.
Most can alert you on your smart phone.
All the best to you on this journey,
Paul

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Hi @PJS . I was diagnosed in 1963 but never took oral meds - Ididn’t even realize they had them back then, at least for kids! I started with pork insulin, then beef, and eventually a combination of NPH and Regular.

Thank you! I’m sorry about your daughter. This has been so life changing and people have no idea unless you are in it. It does help to read and know that others experience the same frustrations.

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We do have a CGM and I love it. That is a game changer.