[superdog683]

you mention some good issues and concerns.

technology is very helpful but for the most part it can not perform any functions 100%.

step one for type one diabetic is routine and diet. yes this is boring but very important. a good solid start in diabetic training would take 100 hours. that is to start and with a good trainer and a good patient. as a pharmacist i like to stay with the old technology for now. insulin pump for basil rate. or use insulin pens long acting agent for basil rate and a short acting for meals. test ye old finger prick and glucose meter. i focus on routine to get consistent glucose levels. develope 10 standard meals to start. 10 brk. 10 lunch. 10 dinner. understanding the glycemic index is key to consistent glucose levels. have to understand carbs and how they are absorbed and avoid high glycemic items b/c those will spike and then drop glucose levels. now this child is very young but older diabetics, alcohol can wreak havoc on glucose levels. next want about 1/3 1/3 1/3 carbs/protein/fat and fiber. example 8oz buckwheat/80z salmon/ 8oz broccoli seems simple and we all talk about a balanced diet but the reason its important is the carbs/protein/fat all get absorbed and metabolised at different rates so this gives the body a sustained level of calories that are digested over a period of hours. there are a 100 important factors i could talk about but the glycemic index and 1/3 ratio and dont exceed 600-800 cal per meal might help some people get started.

just as an aside i have had patients that were motivated, educated diabetics and after a year or two of working with them they could go a week without testing and stay in the 100-150 range. diet, routine, and understanding how and what your body metabolizes are very important.

[superdog683]

i agree, you are doing the impossible.

thank you for the feed back, its how i learn.

yes, 2/3 of that post is for the "average" diabetic that maybe be reading this thread, you are are already an advanced diabetic. just keeping the child alive means you are very vigilant. i have not treated a diabetic under 5 years old. i could learn more from you than you can learn from me.

so only advice i have that may be helpful for you is trust and expand on your expertise. learn the glycemic index. others md and me will be wrong in dosing "your" child. i accept that the patient or parent knows their body and listen accordingly. many medical people will not! when you know your right trust your expertise. and finally, yes the 2 issues you brought up are difficult and unexplained. fever or illness can cause glucose to be erratic. and the low bedtime could be from residual insulin in the tissue. this still wouldnt explain all of it but some of the drop could be from insulin in the tissue, can take 1-3 hours to clear. from the numbers you gave your child has some what erratic glucose numbers. the meal issue is very difficult, maybe you can use the pump just for basil and dose the the child after they eat with humalog. dosing a child before meals is impossible and humalog only takes about 15min.

my post is mainly about how the new technology has limits and using individual dose at or after meals for some diabetics will help.

in a more extreme environment ie if glucose and eating are extremely variable you could wait 30-60 min after meal and dose according to glucose reading this is usually easier than dosing ahead counting carbs etc. this is not a desirable long term dosing method. i would only use this when "forced" to by very erratic eating and glucose readings.

[zaroth]

This is all completely valid and useful advice, but just not really for infants or young children. You can weigh out to the gram every carb on the plate, and dose 15 minutes before eating, but you never know how much they'll actually eat. So then there's things like planning the "backup food" you are going to bribe them with to cover the carbs they've already been dosed for. Similarly, you can pack a lunch and instruct the nurse on how to dose it, but unless they're bringing their empty plate back to the school nurse for inspection, it's all just guessing and hoping.

Clearly there are different phases to the disease. There is no amount of testing, diet, and routine that will keep my 4 year old within 100-150 range for 24 hours straight, let alone a week. Yesterday I saw him fall from 423 to 72 in 45 minutes with no bolus and only .25 units IOB. Activity level alone doesn't explain it, and the doctors even at Joslin Diabetes Center are not particular great.

For example, a couple months back my son was having persistent lows even after what we were certain were accurate tests and dosing. We called to discuss adjusting carb ratios, and they tried to tell us to go from 1 unit for 30grams to 1 unit for 25 grams. It took 30 minutes on the phone to explain they were telling us to go the wrong way. We ended up going all the way up to 1 unit for 60 grams to stop the lows that week, and then gradually brought it back down to 1 unit for 30 over the next month. Was it a virus? Growth spurt? No idea...

Another common occurrence, testing before dinner and being in range, dosing 18 carbs for a meal of chicken, broccoli, and peas, testing before bed and seeing slightly above range but with IOB (insulin on board, meaning he's still burning through insulin that was previously dosed) and the calculations saying he should end up near a 150 target. Then test again 2 hours later (e.g. 10pm) when he's at 0 IOB, and some days he's at 420, other days 60. Same meal, same portion sizes, etc.

We've also had "fun" watching blood sugar plummet in the middle of the night even with 0 IOB and the basal fully suspended. How can blood sugar fall below 60 while he's sleeping with zero basal insulin AND zero bolus insulin in his system whatsoever? Haven't heard a good answer to that one yet...

The point is, T1D for kids means constant vigilance, make no assumptions, don't trust numbers from a doctor you don't understand and agree with, and be ready to question and adjust expectations month-to-month.