Hey, my son David has been t1d since 12/2008. He is 8.5YO, 51" tall, 63lbs. And takes an average of 30-36u of Apidra in his animas/day. We just started a Dexcom G4 trial and see that he is a complete roller coaster. He does not have many lows, but he is high a lot. His basal/bolus ratios are about 50/50. The cde who was doing the trial is not our normal cde. She was shocked at how much insulin e was taking. She halved everything and based his new calculations off the 500 & 1800 rule paired with the TDD calculation rule of weight/4= starting recommended TDD dose. His blood sugars have been high ever since. She made me feel like this was a major problem, and that there is no way a child should be takin that many units in a 24 hour period. 5 years into this I thought we were doing pretty good- A1Cs are between 5.9-7.5 and there aren’t too many lows that are serious. His average carb intake is between 150-200 carbs per day because he’s on the underweight side of his age percentile. I feel like I’m losing my mind over this, and that really I don’t know any more now than I did when he was first diagnosed. Lots of self-doubt now. Anyone else ever been told they are over insulinized?
Growth can greatly increase the need for insulin. Think about it... insulin is important for metabolism. Growing kids are doing a lot of metabolism!
When I was a kid, I took 70+ units a day. Today (no longer a kid, I have grey hair!) my total daily dose is closer to 35 units.
A CDE who is not familiar with insulin dosing in growing kids would likely be surprised by this. The "rule of 1800" and "500" are pretty good for grown adults but not so good for kids. Does your son see a regular endo or a pediatric endo? As a kid I saw a really good team of pediatric endos and (before the days of CDE's) they were quite familiar with the rollercoaster needs of growing kids mixed with e.g. honeymoon rollercoasters at the same time.
Tim.
Over-insulinized? That would just be giving too much to the point of causing hypos. It's upsetting that the cde would treat him like a textbook case. Because no one is a textbook case.
There's no reason for self-doubt. If he was doing better on the old regimen, your job as his mother is to speak up for his health. It doesn't matter how much insulin other kids take. Meeting David's individual needs are most important. Perhaps there are ways of helping him become more sensitive to the insulin. But if not, he needs what he needs.
I absolutely agree. I don't know much at all about kids dosing, but the dose that keeps you in range most of the time is the right dose! Personally I think those formulas are nonsense, for adults as well as children. Maybe they are a starting place, but then the goal is to tweak things until they work. Sounds to me like that cde "took a class once" and is applying what she learned rather than using knowledge to help the actual diabetic child in front of her. I would run not walk back to your endo or previous cde and get back to doing what works, not following formulas because somebody thought a number was wrong.
Kids need more insulin because of growth hormones. I would change his rates back to what they were so he doesn't go as high as he's been and mess up the progress he's made on his a1c and to mitigate problems that highs cause. I think this CDE is definitely used to adults and YDMV not everyone is the same so she shouldn't have changed it in the first place in my opinion if his bg was in target.
I'm not a kid, diagnosed 2 months before turning 30. From my personal experience I would say I'm not a textbook diabetic, my basal is maybe 25% of my TDD on a low carb day, if I went to a CDE that suggested I go 50/50 or based calculations off formulas that are at best guides for starting points I'd tell them thanks for the advise but no thanks and not do it. Best example is when I went to the pump they wanted by starting basal rate to be about 8u for a day based on formulas but I had only been injecting 6u per day manually. I told them I wasn't comfortable with that and set a rate to be slightly under 6 and ended up tweaking the rates down even further to where now it's barely over 5u. If I had blindly followed the advise and ignored my personal experience pre-pump I would have been dealing with non-stop hypo's.
I am more accepting of suggestions when I'm having a period of consistent problems, not so much when something is working and my dosing doesn't fit the general mold of what is expected.
From what I've seen in my dd when insulin is too high, we do see the rollercoastering on the CGMS, but we also see an almost immediate (within an hour or 2) drop in BG after lowering basal. That obviously didn't happen with your son, so I'd bet it's a growth spurt.
I'm certainly no stranger to self-doubt. Just when I thought I had a pretty good understanding, puberty hit. All the rules went out the window. :p
I agree with the advice you've already been given here. A customized insulin regimen for your son is the best. Starting formulas are just that, a formula that will give you a reasonable place from which to immediately start adjusting.
I'm a 158 pound adult male and I use about 32 units per day. But I don't experience the growth hormone changes that your child does. One thing I do know, however, is that I am carbohydrate intolerant. I believe this is true of any person with diabetes, including children. It's the nature of our disease.
A child consuming 150-200 carbs per day would, I speculate, produce the BG roller coaster that you describe. If I were you, I would experiment to identify where your child's carbohydrate intolerance threshold stands and try to limit his carb intake to that threshold or below. This is my perspective and I know others will disagree -- including most doctors and dietitians.
The only way for you to discover where the dietary sweet spot is for your child is to do the experiment, log everything, and make your judgment for your child. I say this as an adult T1 who has suffered for many years from the textbook wisdom of the medical/nutritional establishment. After 28 years living with T1D, I finally found a way of eating that eliminated the metabolic insanity of the high carb, low fat BG roller coaster.
If that's your son, David, in the picture, it looks like he has a big personality ; - ) ! Congrats to you for your active advocacy on his behalf.
So good to know I’m not the only one throwing things out the window! I usually trust what we have going on but seeing the CGM in action really threw me for a loop - and the CDE was very adamant about over insulinization. All the unexpected bouncing of the blood sugars made me realize that maybe these last few years I was just doing it wrong with insulin adjustments, but then we do have our quarterly appts. I guess the surprise was what hit me since this has never been addressed before and the insulting has been a gradual increase.
Yes that is a photo of David, two years ago, he’s pretty awesome! You are right we need to keep better track of his carb intake. I think that could reveal a lot. I forgot to mention that he has Celiac too - so we really do not have more than 80-90 carbs in a day due to the diet restrictions celiac poses. A fair amount of the extra units we use are for corrections I believe, but I haven’t been keeping track of the units that get input in the pump outside of the total. I should break it down into bolus and correction. It looks like that is our next step. I’m slightly OCD - this will probably go into a google spreadsheet and then have some stats run as data is gathered 
We live in rural Idaho - and drive 90 miles to the nearest Endo. They have a very good practice BUT none of the endo’s are specialty pediatric endo’s. it would be another 250 miles to see a pediEndo. I know they have a lot of children patients in the region but I have wondered before if they are not as understanding of the child technicalities. It would be awesome if we could Skype consult through the hospital to a PediEndo in a close metropolitan area…wishing and dreaming…
How would I help him become more sensitive to insulin? This idea has never crossed my mind before as a possibility! Thank you for encouraging me to be assertive, sometimes I get caught in the moment and have a hard time articulating or defending what is working for us. I think I would have been more receptive to the CDE had we had a ton of lows, but he sat in the 300s for a good 48 hours, correction after correction, site change, new insulin vial. As soon as I bumped him back, he can down. I would like to do better about the roller coaster - but I feel that between roller coaster and just sitting in a high, I’d rather take the roller coaster and continue to tweak.
THANK YOU! While I’m always fighting for improvement, the upset was emotional for me because we had just had a great A1C. I don’t like surprises - especially when it comes after what I thought was a good lab result. You made me think of an interesting thing the CDE said / she compared our insuling numbers to her husbands. Who’s been t1d for 34 years. He has stopped growing, of course he will need less than an 8 year old who is shooting up like a weed!
The CDE had cited that the insulin was too high based off the roller coaster information - but her adjustments didn’t leave him any better but worse. So maybe I need to figure out an area to tweak instead of just dropping all insulin values across the board. She adjusted everything, basals, CF, and IC. Usually we do it one at a time so I know if it was effective or not. By changing it all I had no idea what was doing (or not doing) anything 
I've been accused of being slightly OCD, myself. Usually by people that don't live with T1D 24/7/365. They have no idea, so I just let it go. It's your "slightly OCD" character that will pay off with your son's day-to-day treatment and better quality of life.
By the way, your 4 1/2 years of managing David's daily treatment gives you about 39,420 hours of experience, far more than anyone on your medical team. While some of their experience is obviously beyond yours, you need to take the leadership role. It's intimidating with all the credentials doctors, nurses, and CDEs hold - they have nowhere near "your time in the ring." The professionals definitely have a role to play and you need to respectfully listen to what they have to say, but they owe you the same courtesy and respect.
I'm big on gathering and analyzing data. T1D contains abundant data points. It's one of the few things that will let you see some cause and effect relationships as well as day to day trends.
I've learned that BG variability is just as, maybe even more important than the A1c number. A decent measure of BG variability is standard deviation. That function is available in Excel. The data set that you would use are the individual fingerstick numbers that you get from your son.
Good luck!
Our CDEs & endo may make suggestions, but they've never actually made changes to the pump settings. Even if I allowed that, I would definitely not allow sweeping changes like you describe. How can you possibly know which setting is off when everything is changed? Add to that the fact that you can't really adjust the other settings until basals are accurate.
Roller coastering can also happen when boluses are too high. Just something to look at.
I would start by breaking up the day into 4 or 6 hr segments & get some good basal testing done. It's definitely not my favorite thing to do, & my daughter absolutely hates it....insert major teen drama queen moaning & griping. lol
If your basals are good, then I'd look at the IC & CF.
We had a similar run-in with a new NP at our last visit. She was convinced my daughter was using too much insulin, tested too much (avg of 8 times/day including before/after her 90 minute workout & evening 2 mile run). We also break some cardinal rule by checking overnight. OMG! lol I should add that my daughter, in addition to being in the throes of puberty, also has PCOS (she takes Metformin for severe insulin resistance). I plan to make it clear to the endo next month that we won't be seeing the NP again.
We've only used the Animas Ping, but our history shows the breakdown of daily bolus/basal percentages. I believe the software will allow us to see the bolus breakdown by correction & carbs, but I rarely upload so I'm not positive about that.
We've used the Dexcom for 3 yrs & one of the things I like best is it allows us to see the standard deviation & %CV. If you're looking to steady the BGs, that's the data you want. Our meter software also calculates standard deviation, so you might see what data is available on yours.
We break the cardinal rule too, so funny! This weekend we are going to start with the basal testing, it needs to be done so I can have peace of mind. That’s ridiculous they thought testing 8x was too much, what do they think of a cgm?! We are between 8-10x right now. Hopefully we can get it figured out so we can at least not have as many headaches from the roller coasters
I have never plugged in the pump to look at the software. The CD we have is a pc version and I run on macs. I’ll have to check the animas website to see if I can get a Mac version to better compare numbers. We look at the bolus/basal ratio but unless I’m missing something, I haven’t been able to find an area in the pump history that breaks down the bolus between carb and correction.
The G4 we have is only a trial so we don’t have access to the software or data for longer than the 24 that are active in the Dexcom readout meter. It goes back to the endo tomorrow and then we start with the paperwork process. Now that we have even a weeks worth of data from the cgm, I feel like I can’t live without it. It’s like someone gave me a sliver of cake and then made me sit and watch everyone else eat it in front of me! Lol
Thanks so much for the tips!
Exercise is a good way to increase sensitivity. I've found the trampoline is an excellent way to bring down highs....sometimes too well. :p