And allows her to consume massive quantities of junk food. Perhaps this says more about the food available in hospitals however the story doesn't give me warm fuzzies? Also noting the vast amount of stuff plugged into Erin's abdomen which is quite a bit smaller than mine?
I suppose some of the gizmos are "scientific" as opposed to "operational" in nature and it seems like the scientists involved are optimistic however I am doing ok w/ the 2 things currently plugged into my abdomen and am not sure 6 things at whatever as yet to be announced cause is a huge improvement? I can sort of perceive that perhaps there's other things that could be done for patients, e.g. self-treating the hypo, rather than going to the office and calling mom for a hypo? That seems cumbersome however perhaps that's part of the school bureaucracy that would be able to be changed? Schools are squidgy these days. I can't imagine having to deal with one.
I won't paste the whole article here however the # of things and the problems with the school seem to leap out at me. There's probably other things too however I don't want to be too cranky without more medical inforamation about how well the gizmo processes bacon cheeseburgers.
Interesting read. Thanks for sharing. I think the artificial pancreas (AP) holds promise, but I'm guessing it's going to be a long time before it is mainstream enough to be available on the market. There are still quite a few issuers with CGMs and I am really not sure I'd want my insulin dosed automatically based on a CGM reading. In addition, I would have serious reservations about letting a machine do EVERYTHING for me. It sounds nice in theory, but in reality I just don't know if I'd be comfortable with it. I love my pump, but even with that I sometimes get a little nervous about a malfunction.
My other issue is that we are putting all this money to the AP project while there are still type 1s who can't access the current standard of care (pumps, test strips, etc) because they are underinsured or uninsured. I think that issue has to be addressed first, otherwise we are just creating yet another piece of expensive diabetes technology that will only be available to the lucky few.
I wonder too what sort of "feedback" might be available from this sort of equipment, so that if it was "running the show", you might be able to obtain "settings" to inform your use of a less fancy device? W/ the stuff I have (pump, CGM...), I've noticed that if I'm a little bit off, the numbers are all over the place? There's only 40 points between 120 (happy) and 160 (not so much...) and, at least in my conversations with doctors, they seem to be less oriented towards cranking pumps up or down "PRN"?
I also would want to thank Erin for taking one (or 6 I guess?) for the team and doing that experimental session. Abby @ sixuntilme.com posted a blog about her experiences and I would say that it doesn't sound like a lot of fun.
It is interesting to note that the article says that
"She ate Spaghetti-O's and grilled cheese and french fries and hamburgers," Shaheen says. "She ate between 67 and 100 grams of carbs a day, and usually she can only eat between 40 and 50."
This is not exactly a carb fest (of course they may have meant carbs/meal).
The basic technology to do this closed loop system has been around for some time, the difficulty is making it robust enough to be "safe." There has to be more work to make it resilient and a lot more money spent assuring it is "safe." Without this work, I would also worry that some little glitch would cause something very bad to happen.
There is no room on her little belly for anything else, and she is attached to a laptop as well.Obviously experimental....
I agree with your concerns about the school, Acidrock.Why can't she be able to test and/ or treat herself, albeit in the nurses office? When I worked in public schools, the middle-school aged students, as is this child, would come to the nurse's office, escorted by another student or an instructional aide if the child was feeling bad, tested, and would treat themselves. They did not need a call to the parents in order to treat a low, unless the child had passed out and needed the squad. Parents were called, but this is AFTER the treatment, not before. Time is of the essence here. Hyperglycemic episodes and need for a correction were called to parents, but the child usually administered it themselves,under nurse supervision. This was all done according to the protocol determined in the child's frequently updated medical plan. Some were still on sliding scales, but at least it was there for the nurse to see and supervise. Why does the school have to call to treat for a low?..sounds like a violation of her ADA rights and just plain scary stupid .
I agree that the daily carb amount for this artificial pancreas sounds really low and very low for an average 12 year old. I guess everything begins with baby steps. Thanks to Erin for participating in this research.
If I'm test-driving a car I'm not gonna pussyfoot around. I'm gonna take it on the highway and step on the gas, hard. And drive it in the rain and snow if at all possible.
Similarly if I'm ever part of an experimental artificial pancreas research program, I'm gonna push it to the limit too. It just wouldn't be fair to other diabetics or to the research program, to not really give it a workout.
And I highly doubt it's a vacation. She might need to arrange to spend a lot of her school vacation days, and her parents have to take a lot of vacation time from work, going to appointments to help the researchers, yeah. But it can be a lot of work to be part of even the more traditional medical studies (labs, doctors, administration) and must be much more work to be on the leading edge.
That is a vacation from T1 Diabetes? She has 6 devices hooked up to her abdomen, cannot leave the hospital bed for 3 days and has to cross her fingers that the researchers have correctly programmed these medical devices.
If that is a vacation, then I am glad my pancreas has been filling for unemployment for 23 years! I would be a wreck from the mere notion of giving up my BG control. I guess I am not a canidate at this time.
But this is babysteps that will hopefully result in better ways to treat insulin dependent diabetics.
I am more concerned about people unable to afford high-tech stuff, when most are already finding that their diabetes is costing them a lot of money.: I agree, Alan. I know of too-many LADA's; improperly diagnosed, sick, and unable to get proper training and care, much less high-tech devices. Not that I am not at all for research.. (You know I am a Faustman fan.. the drug she uses,BCG, is generic and cheap) It is just that those of us on the DOC probably know more already than most GP's who treat the majority of diabetics..and there is not a lot of funding or research for those who are mis or undereducated.. Do not let me get on my rant!!!
"Elle was selected to try out an experimental device called an artificial or "bionic" pancreas...Shaheen didn't have to set her alarm to wake up every three hours at night because the device was designed to catch a dangerously high or low blood sugar and treat it. 'For the first time since she was diagnosed, I didn't have to worry,' says Shaheen."
I would be freaking out! She is hooked up to a Dexcom and MM CGM and a few pumps. I love my technology, but I am not ready for them to be managing my diabetes. No way would I be getting a good night's sleep.
Also, I heard that Elle is the granddaughter of a politician and that got her into the program (I have no comments on that). But why can she get into this program but not have a pump and cgm all the time? No reason for mom to be relying on some "6th" sense to catch bg swings. Get a good endo and the tools needed to curb the overnight "dangerously low blood sugars"!
Any possibility that calling prior to treatment was the parent's request? Why couldn't she test and treat herself in the classroom? It is so much more efficient and safe to test and treat immediately rather than allow the glucose level to drop further while walking to the office. It also seeems less disruptive.
Shaheen didn't have to set her alarm to wake up every three hours at night because the device was designed to catch a dangerously high or low blood sugar and treat it.
"For the first time since she was diagnosed, I didn't have to worry," says Shaheen, who lives in Portsmouth, New Hampshire.
I have nothing but admiration for parents of kids with Type 1. However, I have noticed a trend recently where it seems to be quite common for parents to wake up multiple times EVERY single night to test children's blood sugar, and I have to wonder: is that REALLY necessary for anyone older than, say, a toddler?
I know children's blood sugar can change fast, but this never happened when I was a kid. Sure, parents woke up on occasion if their kid was low going to bed or had exercised the night before or had another specific reason to think there might be a low (and as an adult, I still do this). But not multiple times every single night. And this was on NPH—where the risk of lows was significantly greater than it is now with MDI and (especially) pumps.
I've noticed the "wake up in the middle of the night" trend too. It has got to be hard but I don't ever wake up in the middle of the night. Before I started working out all the time, I used to wake up in the middle of the night but since then (maybe 2007?) I don't ever wake up as I've worn myself out most of the time since then.
Re the "ratio" point, if she's 12 now and was dx'ed four years ago, she's probably gained like 30-50% of body weight in that time, not to mention the potential for hormones to be more involved that probably make it tough to get "an" insulin to carb ratio? A lot of parent reports@ Tu, not to mention adult reports, suggest that it's not all that easy to do?
I wonder how much of it is the journalist trying to manufacture some "punch" in their story?
I agree and I too was on NPH and Regular and my parents never woke up multiple times during the night to check me. Maybe if I wasn't feeling well, or if my BG had been really wonky they would, but not just as a routine everynight thing, heck even today if I get around to checking at midnight Im doing good. Maybe people just "know" better now, but I too find it interesting.
As far as pump settings go, kids insulin needs DO change constantly, so it's not necessarily just a matter of finding their one correct ratio and having that work from then on. But still, testing multiple times per night seems excessive to me. I've noticed the parents-waking-up-to-test trend seems to happen a LOT these days—i.e., it's not just this one article that's mentioned it, but if you go browse parent forums or read other articles about kids with Type 1, it's also mentioned.
The issue of testing, injecting or using a pump, and treating lows in class and such is not a problem with the teachers, it's a problem with school district and/or federal/provincial policy (depending on which country you live in). It's a widespread problem that is not limited to this child's one school or one teacher.
I agree with this one. When I first saw this article, I asked myself "vacation? really?". That's like saying being thrown in jail is a vacation from my job and day-to-day routine. Yes, my basic needs are basically taken care of, but there's NOTHING TO DO!
I think, in this story, they tried to embellish the negatives of T1D in order to emphasize and promote the positives of this particular closed-loop system (I still can't get myself to comfortably say "artificial pancreas").
From reading other anecdotes from T1s who've participated in closed-loop/AP trials, I can understand the enthusiasm in participating and the disappointment in leaving. This account of a person trying the system, published on DiabetesMine, is perhaps the most encouraging of all that I've read.
