I have so much respect for parents of children with diabetes you guys have to be tough. My dear parents had 2 of us, type 1s, to deal with and I am so grateful for them as I'm sure Rory is/will be to you.
I have limited pump experience as I've been on the medtronic pump a full two weeks today and have been struggling with DP and high morning blood sugars. Your situation seems to be a little different as it seems Rory is spiking after breakfast. Is he usually in a good range before he eats? Have you tried changing the timing of his bolus maybe 15 minutes before he eats? You seem to be doing all the things that make sense to adjust for this, and I know this is tough on the both of you. I really wish I had better advice, but I'm sure you'll get plenty of suggestions pretty soon.
Hang in there, I know it’s tough.
Rant away sometimes we all need to vent. I actually really like the pump;I need just a little more fine tuning. Hope things are working out for you as well.
I don't have a ton of advise for you, but a lot of empathy. We are right there with ya! We do MDI with my 3yr old, and post breakfast is terrible! Same thing, two hrs later she has skyrocketed, but then quickly comes down and even with a 15CHO snack she is nicely back in range for lunch. Its that darn breakfast foods! It doesn't seem nearly as pronounced spike at supper either. We started to pre bolus breakfast by 15mins to give the insulin a head start. It has helped for sure. Still more of a spike than I would like to see, but better. Also, I was doing the same thing and not giving a snack when she was that high. Our endo and diabetic team told us to try not to control numbers with food so much, because they are kids and they need to eat to grow. I was so focused on the number that I totally forgot about that! Talk about diabetes giving you tunnel vision! If snack time at school is an issue, would it be possible for him to have a snack with the other kids but have a "zero value" snack instead? You could give parameters that if he is over a certain number he gets veggies or meat or cheese, but if he is under that number he can have the regular snack. Good Luck, I feel for ya. Hope you keep your hair!
Sometimes carb to insulin ratios are not steady throughout the day. For myself, for example, I take one unit of NovoRapid per 10 grams of carbs. But in the evening, my blood sugars tend to go high after supper. My insulin to carb ratios are different then. It takes some experimentation, I think, to get it right.
I agree with Chris, that his breakfast ratios might have to be different than his other meals. Mine for example are 1:5, 1:10 and 1:19. But one thing you don't say is what he eats for breakfast. If it's cereal, I think you are going to continue to struggle. My favorite breakfast was granola, fruit and yogurt pre-D. I tried every kind of cereal in the market after, including all the "high fiber/healthy, etc" ones and no matter what, even taking extra insulin I ended up high. Cereal is now off my list. I generally eat some form of eggs for breakfast. Many of us find we have to limit carbs in the morning.
I think it is worth to investigate the reaction to at least three different analog insulins: apidra, novolog and humalog. These insulins are different in their action profile because their genetic sequence is different. The best outcome would be to find the one that has such a rapid onset that the spike is much smaller. It just takes three vials and most endos have samples to give to their patients. Of course you need to test more thus I would recommend to use the weekends. Many have claimed that apidra is the fastest insulin. This makes it a good candidate to start with.
One problem with children is that they have pretty good and fast absorption of the digested food. With the loss of our insulin production we have also lost the capability to produce pro-insulin. This pro-insulin will separate into insulin and amylin. So by injecting exogenous insulin we are missing amylin. This hormon will tell the stomach to delay its emptying to give the insulin a head start. In addition it will tell the liver to reduce its release of glucose. Without amylin we are always absorbing the glucose too fast. The amylin can be injected too - the drug is called symlin - but I am not sure if it is safe and recommendable to use it for children.
we are having the same issue, i noticed it esp. this week as jacob was on school vaca so he was testing everyday at 2-3 hours post breakfast for snack, mostly in the 200's, during school he goes 5 hours without eating so he may be spiking then settling down by his pre lunch reading, he is usually good at school. one thing i have tried is to bolus 15 minutes before and include some protein even if it is just a full glass of milk. i am eager to here some more replies to this. and yes he eats cereal most days, a bagel's (small 25 carbs) response is no different, i am of the attitude to change the insulin regimen to work around his food choices for now if possible. i have increased his I:C ratio but am hesitant to be to aggressive with him going so long without eating during school, ( we've set things up so that he could skip snack, god forbid he do something everyone wasn't doing!) we have a md apt next week with a new clinic and i am really looking forward to a new level of care there ( joslin diabetes center) and if i gain any new insite i will pass it along. where he is testing for snack at school i would increase his ratio and try bolusing 15 minutes before if possible! best of luck. amy
i can only imagine what it is like with such a little one, it is so unfair! hang in there, here is hoping tomorrow is better, i'm currently waiting to see if jacob is coming down sometimes he is high after a pod change.. so you are not alone, your plan sounds like a good one, my familiy is on the cereal wagon to, so hard to make changes or even to say no, jacob wanted icecream for his bedtime snack with bs of 240 i know he is going to come down with a good bolus but i have a hard time being bad cop and saying no, i'm like ok just wait a bit after you bolus and i'll get you some after 3 more glasses of water! and he is 13 he knows i cant imagine with a child to young to really understand best wishes tomorrow will be better and todays misery will fade kind of like labor pains, bless their little souls and ours! hang in there, amy
I've read about the "superbolus", where you cut out some of the post-breakfast basal and add it into the bolus, sort of the reverse of the dual/ square wave idea. I haven't ever had much success with the dual or square waves. There's not any directions that I've seen and my experiments have never worked. I usually bolus for about 5 extra G of carbs but I also cheat by eating eggs, not hugely popular w/ kids?
I notice w/ myself that a lot of days, if I start out "ok", my BG will still run up, sort of on it's own. I like to get up, test, have coffee, etc. (read Tu nighttime dispatches...) and then shower and then test again to see which way it's going? If it runs up, which isn't unusual, I can take that into consideration.