Chris, I am curious. What are the three stages you have seen so far?
We have seen, I think, two: a short and easy honeymoon, then a harsher landing with higher insulin needs. But I can see that my boy’s needs are getting more variable with time rather than less. He is 12 and probably just starting to get into puberty right now.
We have seen, I think, two: a short and easy honeymoon, then a harsher landing with higher insulin needs. But I can see that my boy’s needs are getting more variable with time rather than less.
We definitely had an easy honeymoon for the first 6 months after diagnosis. This was characterized by the use of relatively less insulin, and just a few highs or lows. It felt like his body was still in control of management, and he could eat almost anything short of ice cream or pizza and have it under control. He might of only had 5-6 lows and those were easily traceable to a mistake in carb counting or when he stacked without telling us. (His a1c’s were 5.8-6.2)
Following that, things got more tricky. We started having 2-3 highs and 1-2 lows everyday, no matter what we did. The highs and lows were happening at different times of the day, and were hard to get a handle on. This led us to experiment, and my son chose to eat around 30 carbs a meal as his preference to handle his diabetes. This reduced the number of highs (>250) to 3-5 per week, and we were only having 1-2 lows per week. (a1c’s 6.5 - 7.0)
We are currently in what I consider our third phase, and I can only call this the variable phase. I think it absolutely has to do with growing. He is still following his 30 carb rule, but the results are all over the place. He has had a week where everything is fine, he even had two days in a row without leaving the 80-150 range. Then the growth hormones will hit, and 3-4 days will be crazy. We usually can see when it is going to happen, he will go to bed at 110, then around midnight he will rise to above 300 until breakfast, will come down from the breakfast treatment, and then lunch will skyrocket above 300 again even though he only ate 20 carbs, this treatment usually drops him low even if he subtracts from the correction bolus, and then we come into dinner wondering what we should do. As quickly as this happens, it goes away, leaving us for another week where our previous plan worked fine. We are also noticing that when he is in this growth hormone phase, his insulin sensitivity is much higher than normal after exercise.
This 3rd phase has stopped us from aggressively changing our treatment scheme like we used to do since the extra effort isn’t worth the return. We are looking forward to our next phase, whenever that will be…
This is SO useful, one of the most useful posts I have ever read. I think we went through the first two phases you describe, and are just now, slowly, starting to enter your third phase - but we are not in it yet.
This is really good to know. I figure I would probably stress out quite a bit if I did not expect it. We have not seen 300 in a long time. I will ready myself for that.
I am carefully bookmarking your post. Thank you!
EDIT: I jinxed it when I said we had not seen 300 in a long time. a few nights ago ago we had a sick night with a 300 peak:( I should add that, last night, we used NPH for the first time to control sick night highs, and it made a whale of a difference.
I just think that vegetables are the go!! I like my Broccoli and Brussel Spouts as that keeps me regular but Green in particular I think does a lot of good to the vascular system.
Treats like IceCream should be as Thus A Treat then there’s the breakout Friday, pizza anyone. And Bolus accordingly.
Low Carb would be OK or the T2’s as they have a Pancreas that sorta works, so Low Carb can be done for T1’s as they have insulin from not themselves but from a needle. A not entirely accurate source so low carbing to some degree but not entirely.
What do we know for sure about nutrition? Eat enough vitamin C to not get scurvy, eat enough vitamin D to not get rickets, eat enough iron to not get anemia, don’t eat so much protein that you starve to death, avoid trans fats, don’t eat things loaded with arsenic or lead… and that’s about it.
Low carb, high carb, paleo, atkins, south beach, mediterranean, dash, fiber, no fiber, probiotics, veggies, fruits, cheese, dairy, yogurt, eggs, nutritional supplements… through the years evidence has come out on either side of the debate for most of these things.
I was taught this back in May, 2016.
Wonder if that means type 2 methods are just years behind type 1 treatment methods.
I’m Type 1 on a pump and, when I went to a well-regarded diabetes clinic at one of our local hospitals, I was handed a list that looked suspiciously like the exchange list I was given after I was diagnosed 25 years ago…
Yeah, it was first the staff in the hospital when I was diagnosed. Then the CDE (3 weeks later) explained it again (fortunately, I’d discovered the DOC and was underwhelmed by the CDE). The dietitian a few weeks later was equally useless.
I know what works for me. It might work for others, it might not. I have never been low carb and never needed to be.
My philosophy, from the beginning, has always been WHAT do I need (how much energy do I need to function)? How do I get it (what will I eat to meet these needs)? How will I know when I have it right?
The amount of carbs? Pretty much what the dietitian laid out (2,000 to 3,000 calories). But it was stated in terms of carbs: 60g of carbs per meal plus snacks. It ends up being 238-250 carbs a day.
I know it’s working for me because I have the energy I need, my control is good AND I am maintaining my body weight of about 170-175 pounds.
So as long as what you do works for YOU, cool. This works for ME. Which is also cool.
I’m kinda bummed now, because I was looking forward to making a big trans fat, arsenic, and lead sandwich for lunch. 
I am very thankful that we as a specie have the abillity to laugh:-)
I know that everyone is different and responds to carbs and insulin differently, but I do not believe that low carb is a necessity for those with type 1.
I was diagnosed with type 1 about 3 years ago and my A!c’s have been right around 5 since a few months after diagnosis. Since that time, they have ranged between 4.8 and 5.2 and I do not eat even close to low carb at all.
I am not a big eater, but I do pretty much eat whatever I want and that includes sweets, cereal, bread, pasta, potatoes and all the other things some people say those with diabetes should not eat.
Even with eating all those things, my blood sugar level is rarely above 100 when I test and I test a lot. I strive for my level to be between 70 and 100, preferably below 90, and I am in that range most of the time.
Going by my A1c and the fact that I spend most of the time well under 100, I am sure that I am above 100 for a while after a lot of meals, but I am rarely above 100 two hours after eating. I do not test after eating until it has been two hours as I don’t care what happens during that time as long as I am at a level that is good for me two hours after and stay that way even after the insulin has worn off. A good level for me is well under 100.
I think the keys to someone who has type 1 having good control is using the right amount of insulin for both their basal and for what they eat, regardless of how many carbs they eat, testing a lot and being willing to do slight corrections any time they are higher than they would like to be.
Part of using the right amount of insulin for what I eat is using it at the right time. Different foods require different dosing schedules. Often times, in addition to bolusing right before I eat, and once in a while pre-bolusing, I do an addtional bolus part way through the meal and/or at the end of the meal. In addition to that, depending on what I eat, I often do a small bolus quite a while after eating to keep from going higher than I like later from the protein and fats.
For a lot of people, as long as their basal is correct and they are willing to do the insulin and figure out the proper insulin schedule for what they eat, there is no reason to restrict carbs at all.
Shortly after I was diagnosed, I asked my endo how many carbs I should eat and he said the same amount as those without diabetes, just be sure to do the right amount of insulin for what I eat, so that is what I do and it has worked out for me.
I do realize this might not work for everyone, but I don’t agree that everyone, or even most people, with type 1 needs to eat a low carb diet.
Should people choose to eat low carb, for whatever reason, whether they find it easier to handle their blood sugar levels, or they want to use less insulin, or they just want to eat what they consider to be healthier, that is great too, but in my opinion, one should not have to eat low carb just because they are type 1.
Phase 3 sounds like the puberty and growth hormone roller coaster phase, our least favorite phase to date.
Thank G-d, puberty ends. But for women, the menstrual cycle roller coaster continues for a few more decades! 
My first instinct is to agree with Lumberjack – that low carb is a necessity for Type 1. It is hard for me to understand how someone whose body is not producing insulin to match the carbs they eat, can really stay in tight control by injecting insulin, while eating a high quantity of carbs. Yet I’m reading the comments, and people saying they are doing well and in control with high carbs, and I just don’t get how that can be. So I guess I would rephrase Lumberjack’s words and say: Unless somehow you are managing to keep your BG under 100 or so at all times, low-carb might be your only solution to long-term health. (And it’s great for many other aspects of your health, not just the diabetes).
For me it is just a matter of timing and amount of the insulin. Since I know my insulin takes 4 hours to be used completely, I inject a enough so that the first portion of insulin - the portion that is working within the first 30-60 minutes - can cover the quick carbs. I try to inject early enough that my BG is on a downtrend when I start eating.
So for me it is just a matter of being more aggressive with it - more insulin and sooner.
I think lower carbs would certainly be easier to manage from a BG perspective. But I need sufficient carbs for what I am doing, so I just attack them, and then keep a close watch in case I drop later …
Exactly. We control the diabetes, it doesn’t control us
I agree that limiting carbohydrates is important in controlling diabetes; the reality is that it’s not just carbohydrates that impact your blood glucose levels. Whilst some people may find that they can successfully control the rise in their blood glucose from gluconeogenesis which occurs on a low-carbohydrate diet, some people may find this more difficult and less predictable than rises you may see on a moderate carbohydrate diet which supresses this metabolic process.
When I started eating low-carbohydrate it took months for me to perfect an insulin regime that timed well with the carbohydrates I was eating, countered the protein and fat that was being turned into glucose to supplement the lack of carbohydrates. I’ve not personally tested it, but I do often wonder if I put the same thought, and experimentation, into eating more carbohydrates, as I did with low-carbohydrates I do wonder if I could achieve similar if not better results.
Having said that, I certainly agree that when you increase your carbohydrates you have a bigger range for things to go wrong in terms of larger doses of insulin.
One thing that I find makes controlling blood sugar levels harder to control than eating high carbs is eating things that are high in fat or protein. I can eat high carbs and my blood sugar levels return to normal within a relatively short amount of time as long as I bolus appropriately, but that is not the case with things high in fat or protein.
If I eat a lot of protein and or fat, but especially protein, for dinner, I am higher than normal all of the next day. I do not have that problem when I eat things high in carbs.
Things high in protein and or fat cause the rise to come later which makes it really hard to bolus appropriately for, especially when the effects last into the next day.
I think most people overlook the effect that protein and fat have on their blood sugar levels and only focus on the carbs, and that can cause problems.
I would agree with this entirely. There is an art however to learning to Bolus for protein and fat, so it can be done; however, I think depending on your metabolism and a huge number of other factors the results can be quite variable.
Carbohydrates in my experience are usually a little more predictable in their rise and fall.
Interesting: we have the opposite experience, as long as we eat lowish carbs along with high protein and fat.
We have the same experience as you for high protein and fat only when coming with a fairly high carb meal.
Another demonstration that Your Diabetes May Vary:-)