FUDiabetes

What is the RIGHT age (self-management)

I’m getting seriously involved in DMMP (Diabetes Medical Management Plan), IHCP (Individualized Health Care Plan) and the Emergency Care Plan for Hypoglycemia and Hyperglycemia…as well as the 504, obviously.

And as I’m reading and learning the thought comes over me…is there an AGE RANGE that you all think we should get our children SELF-MANAGING??

There is SO much to these forms…so much responsibility for others…in my mind, there is no one better to do it than his parents and HIM…once he learns. But what is the right age to begin teaching them the many things that are required for adequate self-management? He already does BG checks alone, but doesn’t do anything else…but if I could start training him on other things, I want to do this to get him prepared and more independent. But I don’t want to put too much on him…any thoughts or ideas/suggestions/recommendations, would be most appreciated.

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I think there’s no one “right” age for kids. Some kids have developmental delays. Some are great with numbers and preternaturally responsible. Some can’t feel their lows. Some have their lows come on suddenly.

That said, we’ve seen that Samson can test his blood sugar at this age and goes to get his own low treatments from the low cabinet when needed. He knows how many of each item he can eat (4 or 5 skittles, one Hi-Chew, etc.) That said, we’re still likely going to request an aide for treating lows because, even though he can feel them, he doesn’t feel compelled to act on them if he’s doing something really interesting or feels really, really low.

The way I see it, I want him to feel capable of doing everything as young as possible, but not feel like he absolutely has to do everything from a young age, because I think that’s a lot to put on those little shoulders, and I’ve heard too many stories at D-camp of kids who were fabulously self-managed with very little parental input at, say, 8 or 10 – who then struggled in the teenage years and because they were so used to self management, the parents had a devil of a time putting the genie back in the bottle and having their kids consent to parental control again.

Our great T1D doctor at D-camp the first year, who saw hundreds and hundreds of teens, basically said she wanted the parents to be involved for as long as possible, because outcomes just seemed to be better.

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I’m trying to think back on when I started doing things myself and, to be honest, I’m not totally sure since I don’t remember a lot of it, it was a while ago now. Also like, I don’t know if any of this would be the “right” age for anyone else but it’s a rough estimate of my own self-management timeline growing up.

I was testing my own BG (with supervision and assistance if needed) in pre-k and kindergarten.

I was programming my own boluses (exclusively using the Wizard tool) when I first got my first pump in 1st grade. I don’t feel like I remember anyone really verifying my ability to bolus properly or checking my pump screens before I hit go but maybe someone should have been, not sure lol. I would definitely relay the information (BG, carbs, bolus) to the nurse to note down during the interaction so I guess that was probably the verification step. (Prior to this I was on injections with a syringe and vial, which my saint of a mother would leave work to come give me at school.)

I was able to carb count fairly independently by like 6th-7th grade, although there was a lot of “practice” with my parents in the years before that. Up to that point my mom would pack me a lunch and include a carb count on a sticky note for me to bolus by.

I want to say I started doing infusion sites myself around 8-10 maybe, because my mom wouldn’t let me sleep over at anyone’s house until I could do it myself (motivation, lol). The turning point for me actually being able to do it myself was mostly down to needing a transition from manual infusion sites (Animas Comfort Short style) to one with an inserter (like the Animas Inset II/Medtronic Mio). I suspect with the Omnipod auto insertion, Liam could probably do this younger than I did.

I’m really not sure when I started doing reservoirs myself. I know I did do it when I was on an Animas pump, and I think I switched to Medtronic when I was 13 so it had to be before then. This was kind of complicated by the fact that I was doing mixtures with some amount of Symlin injected into my pump cartridges for a while, as instructed by my “experimental” endo, so cartridge fill process was a lil extra complicated. I’m gonna tentatively guess like 7th grade on this one, so like 11-12.

I think I did Medtronic CGM insertions by myself first because they had an auto-inserter, and I feel like I was maybe 13/14 for that. Although I do recall I was freaking horrified by the first round of Medtronic CGM I used because the inserter was basically like a harpoon gun. So probably 14. I didn’t do Dexcom again until after I lost all faith in the Medtronic Enlite sensors and I feel like I didn’t use them for more than a year, so that would put me at 17. The Dexcom insertion was definitely scarier than the Medtronic since it didn’t have an auto-inserter at the time, but once again I think the G6 will be a lot easier than both the Medtronic CGM and Dex G4/G5 because it doesn’t hurt and is basically painless.

When I had a driver’s license and a car at 16 I started going to endo appointments by myself and have mostly been managing things fully independently since then (my parents didn’t know my A1cs at that time unless they asked and I told them, for example). Although I really didn’t start ordering supplies myself until Sophomore year of college (lol) because my mom would order them and ship them in small enough quantities for me to store properly in my tiny dorm room freshman year.

Let me know if there’s any other self-management milestones I’m forgetting. I do think Liam will have an easier time with most of this since the technology is so much better now than it was back then. Plus - I didn’t get my first CGM until 5th grade, and it was not to be used for treatment decisions (Dexcom 7, not even the 7 plus!) so I didn’t see the point of it and it was hard for my parents to convince me to let them put one on me haha. I think the fact that Liam will have all this awareness of the trends and behavior of his BG from such a young age will certainly help out :slightly_smiling_face:

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So teaching him is great…just not for the expectation that he should self-manage, only for the purposes of knowing (perhaps to correct if necessary), and growing in knowledge so that they can take over at a later date.

There are some things about my county that are scarey and really annoying me. Such as:

For some assanine reason, nurses CANNOT CHANGE BATTERIES…Whattttt??? This is such a caveman simple process.

Parents also have to fight and push to get nurses and trained staff to do calibrations. For us, if calibration isn’t done shortly after the blood drop appears, the number can be off by as much as 100 points in an hour. Calibrating is critical but it sounds like we may have challenges with the county in getting them to do this.

I was just thinking that if we trained Liam up to do these things, whether or not the nurses and staff would do it, Liam could do it.

I’m not enjoying the process so far and it’s really only just begun…what the parents have told me is unsettling to some extent, but they’ve also said the school and staff are very accomidating and do work with parents to the extent possible. But to not change batteries? Really?

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what is their rationale for that policy? Because it really makes no sense. We really need to start the 504 process for Samson… ugh. Not looking forward to that.

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Thanks so much for your feedback. I’m like “Cathy” right now (you know, the cartoon Cathy who ends up severely stressed out by the end of the comic strip…that cathy)…and our 504 meeting isn’t until March…just looking over all the paperwork, documents, federal regulation information, etc.,

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They haven’t offered any to the parents and anyone that knows me knows that won’t fly with me. If they don’t have a damn good reason for not doing something then I’m going to be a pretty difficult parent to deal with…

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I’m reading the “Helping the Student with Diabetes Succeed: A Guide for School Personnel” right now. It’s from NIH. Link is here. If you haven’t read it, it’s good reading and helps with seeing all the processes involved:

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If Liam does have to change his own batteries, I’d suggest drawing some sort of symbol on them and whatever they’re going into to help him figure out which end goes where, and packing a bunch of his marked batteries in his D-kit at school.

For calibrations, they’re typically every 12 hours on G5 if I remember correctly, right? Maybe one before you leave for school and one in the evening would avoid problems with calibrations at school. Of course that doesn’t help when the sensor randomly decides to go astray but you can only plan for so much

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I have some parents from my county sending me some scrubbed 504 plans. Would you like a copy of them when I get them? These are going to be specifically for young children like ours (K or Pre-K).

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From FUD recommendations, I’ve been carrying around “film cannisters” for the past couple years that are perfect size for 5 AAA batteries. I’ll need to definitely mark them appropriately if/when he does this (or just teach him which end goes where.)

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Not that private school is an option necessarily, but does anyone know if private schools have the same red tape or requirements that public schools have? I randomly met a private kindergarten teacher last year and she was telling me about having her first T1D student and how she did all of his fingersticks, boluses, and treatments. The student’s mom taught the teacher everything and she did it all. She said she wouldn’t be able to do that in a public school…I’m just not clear on which part makes it different. Are there 504 plans in private schools?

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I believe any educational institution which receives Federal Funding is legally bound to the same law.

Which also clearly can be interpreted to mean any school which does not receive Federal Funding is not bound by that law.

Some private schools receive Federal Funding and some do not.

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Section 504 specifically applies to private schools that receive federal financial assistance. 29 U.S.C. § 794(b)(3)(A). Section 504 is an anti-discrimination statute. It prohibits private schools from discriminating against students because of a student’s disability. Section 504 is not, however, an affirmative action statute. It does not require private schools to substantially modify their programs to provide access to students with disabilities.

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I know you will likely find the other 504’s the best thing to get, because then you will know what they allow customarily and what you are going to have to fight for, or provide for him yourself.

I am very interested in what you are able to work out. This is such a black box area, i.e. at the beginning we really didn’t know what needed to be in there and what was just fluff. Once we started having issues that could be addressed with the 504 it became more clear. Unfortunately, my son was so much older that it doesn’t help all that much.

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It’s a gradual process, but it can start very early with involving him in what you are doing. The decisions you make, explain the whole process and “think out loud”. Just basically talk through the decisions you make and get him involved in the process. Ask his thoughts. Even if his ideas are not right, let him express it and involve him in it.

Don’t bombard him with too much, but just gradually pull him into it. When you have to change the PDM batteries, do that with him. Loading the pod, all those things.

Rewards for when he does stuff would also be helpful.

Tell him Mr. Eric has an Amazon gift card for him as a reward for when he does his very first pod change all by himself - removing the old one, filling, priming, putting on, and activating. No hurry, it will be waiting for him. :grinning:

But that’s a good reason for him to want to watch you do it so he can learn the whole process. Just focus on a few little steps at a time.

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My son was diagnosed at 11. From day 1 he refused to let us do anything, to the degree that I simply wake him up if he forgot to change his pod. I just asked him what he thinks. He figures that he could probably have done everything about his care starting around age 7-8, and some things before that: testing, logging, treating most lows, corrections, removing pod or sensor. He thinks he would have had to be 7-8 to set a new sensor or pod, and to inject insulin without a pump, although he did mention that some kids in D-camp don’t like injections. Carb counting he is not sure. He feels there is a range there.

Re. batteries: what do you need batteries for? For us it is only the PDM. We change them on the last day of the month and we have never run into trouble yet.

For calibrations, our routine is to calibrate right before bed if possible (by my son), or sometime afterwards if not (by us), and right before wake-up (by us). So for us there is, in general, no need to calibrate at school. My son always found calibrations easy, so I am guessing it would not be hard to get Liam to take that on soon.

504: I am happy to send you ours if you want. The big problems with 504s is the negotiation. We always had helpful schools, so we had no trouble with that. Also, it helps with each school to show the 504 you had before, so negotiating as well as you can for the first school is very valuable, even for things that will become important only later on, like tests.

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I was diagnosed at 6 and became (nearly) independent by age 8.

I remember getting me to that independence, my parents would give me an extra 15 minutes of TV time if I replaced my site on my own (of course offering guidance along the way on the how to; there were a lot of mutilated oranges as a results…). Like Eric said - positive enforcement! In how you praise as well as tangible things. And that really stuck with me, so I would recommend. Additionally, I practiced filling reservoirs alongside my mom (while she was still learning) and we made a game out of it to see who could get the least bubbles.

Regarding carb counting - my parents packed my lunch each day and would leave a note with how many carbs were in it (until I got to 5th grade and would pack my own lunches - carb count verified by my parents for the 1st month). Fridays I got to get a school lunch, and I was buddy buddy with one of the lunch ladies (who was T2D and adored me) who would measure the servings accurately for me and tell me the carbs from the boxes; she was a savior.

We would have a quick meeting with my teachers at the beginning of the year and essentially explain if I was acting “drunk” then I should be sent to the nurse, with a walking buddy. So I ended up making friends that way since everyone wanted to get out of class! We also showed the teachers how to use a glucagon shot (not sure if you can do this now), but if you can, I would also recommend it.

Also something to note - I was really terrible at remembering to let my parents know when I was running low on hypo treats at school so they learned they needed to ask me.

I think it’s really incredible you have the a CGM!! That would have been revolutionary for me as a kid.

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You can do that, in addition in our school district the district nurse runs an official class on how to administer glucagon to the entire staff of every school that has a T1 at it. So in some school districts things aren’t so hard. Unfortunately, we have talked to enough people to realize we are lucky in this regard.

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Yes. The PDM. We tend to “push the limits” on when we change ours, but yes…the parents who have this problem with the county say they just replace them every week to ensure they’re going to be good. We’ll probably do the same type of thing…unless I can talk some sense into them and teach them the very complex operation of changing batteries…

Liam can check his own sugars and calibrate his own receiver / phone, but you’re right. Right now we really don’t have a “set time” to do this…we just do it whenever it pops up, day or night. But when his school time comes, we’ll probably make this become a pattern as you all do. Probably late evening, and early morning.

I still have the one you sent us in May 2017. That one? If it’s another one, sure!

Thanks!

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