pediatric endo's feedback to D teen

Mine is in college and living at home. When she uses her dexcom, which is another issue, I am not on her share nor does she want me to be. She had a friend for a while on it now it's her boyfriend. My thoughts are that if she were living away from home I'd have no idea anyway so I just deal.

I do think it's weird to have specific A1C goals as so much goes into it. You could be sick and have things go off for a week. All kinds of things. Just seems like its a set up for failure. I"m more in favor of a general lets see if we can get it down a bit kind of goal. Also it's going to vary so much person to person.

 

My son's endo told us in March that tight monitoring had recently been redefined as at least 7 tests a day and occasional night time testing.

 

Our endo always says we are doing great and then looks for things to change. I figure they just need to feel useful Sometimes I take their advice; sometimes I don't.

I found a baby monitor annoying. It makes too much noise and with any alarm I then needed to walk down the hall anyway. We just got share technology so I can finally see her #s at night. It's great to see them but I'm actually sleeping worse. I stopped setting an alarm but now it gets me up randomly which makes me a lot less rested.

 

Oh and our endo's office used to not encourage night checks but since they've seen what CGMs show at night they have changed their tune.

 

We just started Share this week. I too feel a lot less rested. Every time I wake up I feel the need to check it. I think we may go back to taking the phone out of the room and just waking to the receiver alerts (I'm a light sleeper so it's never been a problem). It's almost too much info. I honestly feel like glu numbers are taking way too much space in my thoughts. Constant readjusting and although I feel our control is very tight because of the info, a lifetime if this would surely lead to burnout. If we can't have a cure, someone please hurry up with an AP. I will never take my pancreas for granted again.

 

Going back to the topic & having had more time to think about this....

Our endo wasn't happy with an A1c <6.5. He 'allows' (his word) 2 lows per week. In his opinion, 1) an A1c that low is not possible without multiple lows, 2) running BGS tight enough for an A1c that low is 'micromanaging' & leads to rebellion & burnout in teens. When my dd's A1c was 6.3, he insisted we were missing lows. This, despite the printout directly from the meter software & my insistence that Dex would've shown the lows. At that time we were using the 7+ & had incredible accuracy most of the time. It was the only time I volunteered Dex reports, & his only comment was they were cool.

I can't help but wonder if the endo might be concerned that this teen is over-managing, & that's the reason for the overnight testing (really don't like that word!) comment. It's purely speculation since we don't know the history or pertinent details.

FWIW I showed the pic to dd to see what she thought. Her first comment was is that a pass or fail? When I asked how she would feel if the endo set goals for her, she said he has no idea what she does from day to day so he really isn't in a position to set goals. She also said if goals were to be set, she thought she should be the one to set them. Her only comment about the overnight testing was "yea, that'll work until he/she sleeps through a low & wastes half the next day feeling crappy."

 

From the 2015 ADA Standards of Care found here

" The patient’s specific needs and goals should dictate SMBG frequency and timing."

and

" For Patients on Intensive Insulin Regimens

Most patients on intensive insulin regimens (multiple-dose insulin or insulin pump therapy, including patients with type 1 diabetes) should consider SMBG prior to meals and snacks, occasionally postprandially, at bedtime, prior to exercise, when they suspect low blood glucose, after treating low blood glucose until they are normoglycemic, and prior to critical tasks such as driving. For many patients, this will require testing 6–10 (or more) times daily, although individual needs may vary. A database study of almost 27,000 children and adolescents with type 1 diabetes showed that, after adjustment for multiple confounders, increased daily frequency of SMBG was significantly associated with lower A1C (−0.2% per additional test per day) and with fewer acute complications (6)." (emphasis mine)

I was disappointed not to see overnights mentioned. Then again, this is the same organization who thinks SMBG has limited benefits for Type 2s.

 

I decided to put the phone in a drawer in the room. I have read that people develop addiction cycle depression from opening facebook or E-mail too often (there is an anticipatory release of endorphines) and I was feeling burned out. Also looking at a relatively bright screen at night can't be good for sleep.

 

I used the Share app for exactly 1 day. I found myself constantly looking at it and the alarms were driving me crazy, lol. I turned it off and have gone back to my blissful ignorance. :wink:

 

Our CDE said the same thing at our last visit when my son's A1C dropped. She was convinced he was having lows even though I also showed her the Dex reports to the contrary. I never thought about them being fearful of micromanagement and burn out, but that makes sense. Considering I am far from a micromanager (see my comment above about turning the Share off :wink: ) and my son is really laid back about his D, I pretty much just smile and nod when she makes comments.

 

The option to "closer management" for me is to let my son run 200 for 4 hours. So do you (micro) manage, or do you let them hang 200 without blinking?

I don't think it is micromanaging to have your kids eat 3-4 balanced fairly consistent size meals a day, and correct lingering highs.

 

You're still looking at management as black & white. It rarely is.

Your choices right now are more limited. There's only so much you can safely do during honeymoon & even for a while after, since the honeymoon usually sputters along rather just ending. I think most endos prefer to err on the side of caution.

And micromanaging is very much frowned upon, at least with all but 1 ped endo I know. Burnout is very real...in both parents & CWDs.

 

Give me some examples of what you would consider to be micromanaging with MDI.

 

We use MDI and I think we micromanage relative to most parents (as most on this list probably do). When I think about micromanaging it's mostly just having tight goals and stacking insulin. But we stack wisely. Iob is just a calculation your pump makes; I can calculate too. I'd say our approach is close to that of Sugar Surfing though it was even before I read that book.

We're on our third endo btw and have never been criticized for micromanaging.

 

10-12 shots per day? I would say that was micromanaging. I would say that if that were one's daily regimen then a pump would be in order.

To be clear, I'm not challenging you. In fact, I'm agreeing with you. It takes what it takes but, in my opinion, shooting shots all day is not in our children's best interest. Get a pump. Again, not directed at you. Mark this one down as a check in your direction.

 

I honestly never count how many shots per day we do but I bet it's at least this many because we'll give multiple shots per meal -- some to prebolus and then more when we see what she eats. I loved the pump for the 5 years she used it but now my dd refuses to wear one. Thankfully she will put up with Dexcom. Other than potentially using up tissue (and of course we do try to vary where shots go) I don't see how it's not in her best interest other than D just not being in her best interest. On the other hand, I do recommend the pump to others. I don't know how we would have survived the toddler years without it.

 

I think if multiple shots work and your child is not complaining there is no need to go to a pump. We have pumped for going on 5 years now. Back on July 4th, ashleigh had "pump burn out". Decided she was done pumping and wanted to take a break and go back to shots. I don't think she's up to 10-12 shots. but i good amount. I'd say she takes at least 8-10 shots per day. She mentioned going back on the pump once right before school started, but then changed her mind. She has an endocrinologist appointment on Oct 15, I was going to ask if she wanted to return to the pump after the appointment, but if she doesn't that's ok too.

 

I agree. We turned off SHARE at night. It turned out to be more restful to just test him/look at receiver outside his door once a night. Phones are out of our rooms and I think we're much happier. SHARE will be useful when he is with a sitter, out of range, etc. DS has a room right next to ours....it may be different if we move to a home where he is upstairs/downstairs, etc.

 

See I have a lot of options. Right now I give him 4 or 5 shots a day, and he stays between 70-180 99% of the time and averages 110-115.

I could give him a higher ratio of carbs for insulin and his honeymoon and he goes to 200 for an hour on occasion but still usually is the same place in 4-4/12 hours (80-110). He's not lower at 4 hours with more insulin, it just takes his peaks down 20-40 points. And then I could maybe do a correction at 4-5 meals a week where his honeymoon doesn't polish off the rest of his blood sugar by the next meal.

Or I could split his lunch and give him 3 shots for large dinners and do Lantus twice a day and keep him between 70-150 all the time right now, and averaging 99, but I don't want to do a split bolus for lunch or a triple dose for dinner, or split his Lantus, or have him eat half his breakfast 2 hours later, so I'll let him go up to 180 a couple times a week in exchange for cutting his shots from about 50 a week to 30. Also I could cut his morning snack and watch to see if he goes low early at school and call teh school to tell him to eat the other half of his snack.

I DO however pick out a carb amount ahead of time for a meal based on how hungry he is. We try to keep breakfast and lunch within half a unit worth of carbs. I try to have a fairly consistent blend of protein, carbs and fat at each meal. I will split bolus for dinner if he wants to eat more, sometimes waiting to see the signs of his "second run." I may hold off on the snack on non-school days to see if he is running higher, later.

Nevertheless, if I wanted him to run over 125 average right now, I would have to intentionally underdose him for meals. i know that later on I will be looking at 130, 140, 150 average weeks, but this is why I am starting to set limits. If he spends a lot of time over 180 for several days in a row I will try to raise his TDD and figure out where to put the extra.

 

I'd hate for you to see my son's CGM graph. It would probably have you hyperventilating. :wink: It goes up and goes down. Sometimes it stays up. We correct and move on. His A1C's are where they should be, so all it good.