This post made me smile. Thank you, and everyone else for the encouragement. We are doing our best and we’ll figure this out. This site has definitely made a LOT of difference to me, my wife, and our son, thus far and it is appreciated.
<3
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There is no rhyme or reason for his spikes right now…here’s the occasions he spikes:
- After a meal (understandable)
- For absolutely no reason in the middle of the day…after having eaten 3 or more hours earlier. (Not understandable)
- In the middle of the night around 4AM for no apparent reason…and NOT breastfeeding. My wife noticed the past couple nights he has NOT been feeding, but he still naturally rises between 3 - 4AM…and when I say “rising”, I mean it goes from mid 100’s to nearly 300 for no apparent reason.
I think the pump is going to help out tremendously.
We are both now (my wife and I) totally on board to giving corrections (stacking) in small doses as necessary during the times he’s awake because we are now certain we can correct any “potential” lows before they ever become lows…and we agree that fixing highs is a priority. Lows are really easy…they aren’t easy once they happen, but they’re easy enough to avoid if you just keep an eye on the CGM receiver…(which I’m OCD about doing every 5 minutes)…so never again will we allow his bg’s to linger more than a few minutes over the 300’s.
One possible way this can happen is if you use fast acting insulin for a meal that is low in carbohydrates and high in protein or fat (or both). Protein is digested and metabolized much more slowly than carbohydrates, and fat in a meal containing carbohydrates can even slow down the absorption of the carbs. In scenarios like those, the fast acting insulin can be effectively done and finished working before everything is metabolized, so there is essentially nothing left to counteract the latter part of the blood sugar spike.
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From an adult perspective, I usually correct 2 hours after eating if needed. Since you don’t have a pump yet, do you have a smartphone? There are good apps that you can download for free that helps you determine correction factors. A low while scary is much easier treated than running high so much of the time. Seems to me your endocrinologist overly cautious about not wanting to adjust dosages/corrections, etc. Hope you can get some answers and guidance. Are there any other pediatric endocrinologists where you live at that you can at least make appointments with and for lack of a better word, “test drive” to see if you like their management style better? It sounds like the overnight high is part of what is known as the Dawn Phenomena, which a lot of diabetics experience and even though below talks about type 2 diabetes, a lot of type 1’s experience it as well.
All people have the “dawn phenomenon,” if they have diabetes or not.
The dawn phenomenon is a surge of hormones that the body produces daily around 4:00 a.m. to 5:00 a.m.
People with diabetes don’t have normal insulin responses to adjust for this, and may see their fasting glucose go up.
The rise in glucose is mostly because your body is making less insulin and more glucagon (a hormone that increases blood glucose) than it needs. The less insulin made by the pancreas, the more glucagon the pancreas makes as a result. Glucagon signals the liver to break down glycogen into glucose. This is why high fasting blood glucose levels are common in people with type 2.
Steps that may help:
Eat dinner earlier in the evening
Do something active after dinner (such as going for a walk)
If your fasting glucose continues to be high, your health care provider may prescribe medication.
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When you are using undiluted Humalog in a syringe with a child who uses tiny doses, there is not much adjustment to make in dosing. You are pretty much always using 1/2 unit doses – potentially 1 unit if they eat en epically large meal or are crazy high. Given that level of resolution, I just think there’s not much the endo can recommend in terms of dosage adjustment, unless he basically needs double the amount of insulin he’s currently getting.
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I unfortunately can’t offer much advice on this topic. Having never had any experience with diabetes in toddlers. Given the daily struggles I face to control my blood sugars I can only imagine the body has a plethora of extra things it throws at stable blood sugars for toddlers.
I don’t want to underplay the danger of having a blood glucose reading of 400+ but try your best not to let it get you down too much. It’s also important to remember, that assuming you aren’t at risk of your son going into DKA that at this early stage, the occasional high blood sugar is not going to cause serious long term damage, or any damage it does cause will likely be repairable when his sugars are more controlled. It took me decades of living with this condition to actually be able to keep my sugars in a fairly stable environment. Spikes of up to 300 were not unusual for me in my past days, and if I look at my A1c readings from my teenage years I’m horrified. Not from lack of trying on my behalf I would say, but it’s just hard to live with this condition.
I’ve often heard people say that although it’s horrible, frustrating and scary when blood sugars aren’t doing what you want them to do, the first step and the most important step is actual recognition of this. Plenty of people, both parents of T1Ds and T1Ds themselves don’t regularly monitor there sugars, and if they do don’t do anything at all to try and correct bad sugars.
You’re reaching out on here, with your endocrinologist and your doing wider reading. You’re certainly not ignoring the problem. Will you always get it right? Probably not. Does anyone always get it right? Certainly not. I’m confident that you will eventually learn more about the condition, and you will eventually start to know what works for your son. Honestly, you are doing a great job from what I’ve read.
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The past 24 hours have been our best “range” so far. It seems the addition of the extra Basal shot in the evenings (2 units) has really helped out with those nighttime highs.
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I’m getting a little bit of this since my son was dx’d with type 1 at age 17. I learned a lot then and of course forgot everything when he moved out.
A few months ago he got the flu. He wasn’t eating but his bg was 450. There was absolutely no way to get it down and I was very, very worried about DKA. He nearly died last summer from DKA and also has extreme lows, so I’m reading this thread with great interest.
I can’t imagine doing this with a toddler. How scary.
Is he ill?
I woke up with a fasting bg over 180 yesterday and I think it’s because I’m coming down with something.
He isn’t sick any longer – he was sick for the past couple weeks, though. This is a GOOD range for him, believe it or not…if you see my previous Receiver snapshots, you see it above 400 several times. Being between 100 - 250 I can live with…our GOAL is 100 - 200, but we’ll take very small victory we can get.
I’m hoping your longer-term goal for your son isn’t 100 - 200… I still believe your endo has given you a lot of misinformation and has not advised you how to manage your son’s T1D in a more reasonably aggressive manner.
Our short term goal is 100 - 200. If we can get it in this range, it’s perfectly acceptable for a Toddler. 80 - 180 would be perfect, but being that we’re still struggling to stay out of the 300’s and 400’s, we think “short term” at least, 100 - 200 is more than sufficient (much better than 300’s and 400’s!) Eventually, I’d say “long term” we’d love to stay within 80 - 180 range, but again, that’s mid to long term. I don’t think it’s so much misinformation as it is just figuring out his metabolism and getting the insulin dialed in correctly…once we get it dialed in, I think (especially after we get him on the pump), the numbers will be much better.
I’ve read many studies now where toddler’s BG ranges are FAR outside the normal parameters and it’s outside the acceptable range, it’s just part of what it is to have a Toddler with T1. We’ll continue doing what we can do to educate ourselves and figure this out day by day.
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You’re doing awesome. Keep at it.
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You amaze me. You are doing great with your son. You are educating yourselves on D and are watching the results. Your son is fortunate to have you. Not e very parent is as diligent as you
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wow, reading thru this…breaks my heart as tears fall down my face. for anyone to say, especially a type 2, it gets easier…well, I haven’t found that to be the case…we tend to just get used to the challenge and the difficult; discover a new normal…but you will be able to soon breathe a bit easier…that is what I hope for you and your wife. 
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