Best advice I've received so far came from our former PA. We were new to pumping & I was obsessing about the 50/50 basal/bolus thing. She sat me down, looked me straight in the eye & asked why I was trying to force my child to follow someone else's rules. At the time, she was about 70/30, if I'm remembering correctly. Those rules are just guidelines, & as has already been pointed out, they're for adults. Use the calculations (based on your child's weight & age), but adjust where you see the need & don't worry if he's fitting into the boxes.
The extra site I referred to was the Dex CGM site. The Diasend website can accept uploads from a wide variety of BG meters. You mentioned David's favorite strip but I'm not sure what meter that goes with. I just checked the compatible meters for Diasend and this is a partial list of all the Abbott meters:
Abbott FreeStyle Flash
Abbott FreeStyle Freedom
Abbott FreeStyle Freedom Lite*
Abbott FreeStyle Lite
Abbott FreeStyle Mini
Abbott FreeStyle Navigator
Abbott FreeStyle InsuLinx
Abbott Precision/Optium Xceed
*This is the current "most accurate" recommendation by Dr.Bernstein.
Good luck with you Dex CGM approval.
On the topic of phone consults and internet consults Integrated Diabetes Services does phone consults for sure. And I know of a lot of people who have used them for pediatric patients. It is possible to get insurance to cover the cost.
the website says All consultations are available in-person or remotely via phone and the internet (including video conferencing).
Is that 30 to 36 TDD of Apidra a day for a 63 lb kid? Or is that basal? If basal, I agree it's high, but because of growth hormones kids need what they need. If that is what it takes to keep his blood sugar in range, he needs it. If that is a TDD of 30 that's normal. I think there is a formula of sorts for children that says they may start out with .50 unit per pound of body weight; Our DD used double her basal during growth spurts but that was only for certain hours of the evening, not every hour. If that is only basal and he's using 60 units a day that is 1 unit an hour for a 63 pound kid and 60 units is about what our DD used as TDD from the ages of 11 thru 15. You need to talk to a pediatric endocrinologist even if you can only make it there once a year. P.S. Those "Rules" do not work in children especially when determining insulin sensitivity. Usually children are a lot more sensitive than adults. There is a CDE who will oversee your child remotely. Gary Scheiner of Integrateddiabetes.com. He's excellent, a Type 1 himself. He may be able to help you.
I see you have a lot of responses here and I do not have time to read them all but I wanted to share. I think this diabetes educator your are working with is clearly not a good match for you or a good CDE. the one thing we all know is everyone is different, putting people into categories based on the books is dangerous practice! you need to treat your sons blood sugars based on what he is eating and what corrects him not by some set limit... ridiculous! he needs what he needs. my son is 14 and eats a lot he now uses an avg of 60-70 units of insulin a day and eating around 400 carbs a day, eeekkks, I would prefer he tried to eat less carbs but as long as most of his food is good quality I prefer that he tests and boluses 100 percent of the time rather than limit is diet for now, I want him to learn to have a healthy knowledgeable attitude about his D. At some point we become our childrens doctors then they become their own, it is great to have a supportive team that is on the same page with you but when that is not the case we need to do what we feel the right, learning all we can, experimenting a bit diabetes is after all a self managed disease like no other ... trust your instincts and ask away, those that have walked the walk are sometimes better able to see the big picture and share their experiences more than someone 'book smart' about diabetes. blessings to you and your son. amy
Sounds like the CDE is playing doctor, and not doing it well. I mean if someone is T1 with highs and you cut their insulin in half, there is going to be one result every single time. Also, if there were too many highs, the solution is more insulin and not less. Does she have an employer or is there a regulatory agency she can be reported to?
Call his endo on the phone and ask if the amount he is/was taking is a problem at his age. Also, the pediatric endo you mention might be willing to answer a general/basic question like that over the phone.
i'm glad you posted this. per my CGM and my roller coaster nighttime BG's, which I cannot get right on MDI, i think I'm taking too much insulin - levemir. Yes, it can lead to high highs, rebound highs that are impossible to get down, well, they take forever and you feel like CRAP. There have been days/nights when my BG's were so up and down my CGM would just stop working because it couldn't keep up. Basal testing is clearly the key, everything is centered around basal. My CDE told me to add more insulin overnight, keep adding MORE levemir and I drop and then sky rocket up to 200's every night. Woke up again in the middle of the night with BG's going up to 200's in a pool of sweat. ugh!
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