We’re a couple months into our switch from Animus to Omnipod, and we’re slowly reaching cruising altitude. I’ve gotten great tips and information from other bloggers and podders that have definitely helped the transition – thank you!
A quick snapshot of how this transition looks for a 3-year-old boy and his pancreants (disclaimer: insulin delivery devices are a very individual choice – I’m not out to champion one pump or another for anyone else):
- No surprise - going tubeless has been AWESOME! Luke can run around with a pump bumping on his back, we can hug him and not hug his pump, and going swimming is much, much easier.
- Surprise! – I like that Omnipod doesn’t track IOB for carbs (it does for BG corrections). I understand concerns. We’ve had our share of stomach bugs and mini-glucagon moments, but with bolus history in the Omnipod, we’ve been able to quickly figure out carb IOB when needed.
95% of the time, not seeing carb IOB has saved us from getting twitchy and giving too many free carbs. And we find corrections work much better without the pump including carbs in the IOB, as Animus does (we are careful not to correct for at least 1 1/2 hours after eating). Animus often would not suggest a correction hours after a big meal even if BGs were in the 200s, because it assumed meal insulin on board would bring blood sugar down – but that often didn’t happen.
- Complete remote control – Having all pump functionality in one PDM is fantastic, because we change pump settings on an almost daily basis to keep up with Luke’s growing, changing body. The smooth little Pod is safe from his hands, and if he bangs it up or loses it in the pool – no worries about an expensive piece of equipment.
- Freestyle “Lite” vs. Regular strip debacle - Omnipod officially only supports Free Regular strips, but both work in the PDM and our rep told us it didn’t matter. The packaging made it very difficult for Medco to tell the difference, and we ended up with Freestyle Lite strips. A month later, we got a crappy A1C (8.8) that didn’t line up with numbers in the PDM or Dex. I found out from others who’d also had this experience that sometimes Freestyle Lite strips read lower for some individuals. We pulled out the Ping, another Freestyle meter, control solutions, and our fingers, and spent a weekend checking every possible combination of strips, meters, and calibration #s. Turned out Freestyle Lites read 20-30 points lower for Luke, and resetting the calibration to 18 gave a reading closest to the others. We then got a shipment of Regular strips, which we’re now using – curious to see if our next A1C is closer to the PDM and Dex #s.
- PDM didn’t track correction IOB - Early on, daycare got a PDM error 5, which seemed to be a strip error. An hour later, Luke’s blood sugar dropped rapidly (double arrows down). Our nanny looked at the paper log and figured out that the correction IOB wasn’t being tracked in the PDM. Luke had been bolused twice for a very high BG and had way too much insulin in his system (juice away!). Omnipod replaced the PDM (to their credit, they very readily replace PDMs), gave us a free backup, and reported the error up their management chain. Their manual is very vague about what issues error messages indicate, so we now investigate any error very carefully.
- Need smaller basal increments - There are a few hours during the day when Luke’s basal needs to be lower than the smallest .05/hour. With Animus, we could set .025/hour or even zero, which is great for small kids. We give free carbs to counter the .05/hour, but it’s one more thing to remember.
- Limited real estate - Since the Pod is much larger than the average set, it can’t be put in as many places. We can only use Luke’s butt, which is looking pretty chewed up. I’m taking comfort from the fact that other young podders seem to make it work, but – I want the smaller pod this year!
Ain’t nothing ugly about it! Like so many little things, that makes a huge difference. Seeing Luke attached to something that looked and felt like a piece of hospital equipment (with a DOS interface) was depressing. Using a smartphone-like UI and pod feels like we’ve moved into this century, where diabetes is another complicated facet of daily life that can be tracked and managed. In a subtle way, it gives us hope, which is a very big thing.
While everyone’s posting great ways to raise Diabetes Awareness this month and still wading through all the great Halloween pix from last month, there’s another (wonky) reason to celebrate: the FDA is allowing Medtronic to move ahead with in-home trials of its low-glucose suspend technology! You know – the one already in use in every country that sells Medtronic pumps. We’re catching up, people!
If you’re one of the 100,000+ who’ve signed JDRF’s petition telling the FDA to get a move on, pat yourself on the back – and if you haven’t, there’s time till December 1st: http://takeaction.jdrf.org/site/PageNavigator/APAC.html
The other small reason to celebrate is that out-patient trials of the artificial pancreas in France and Italy showed great results. Participants had near normal blood sugars after eating out at a restaurant and letting the AP manage their blood sugars for 24 hours. More on JDRF’s blog.
Trick-or-treat a few years (please, not decades) down the line, with no parental oversight involved? Sweet!!!
JDRF is getting smarter about smart insulin.
They’re funding another round of Glucose-Reponsive Insulin research (explained in a webcast today) but this time they’re not handing over a lump sum; the Glucose-Responsive Insulin Prize will be offered in stages, with $100K for the “Ideation Challenge.”
Smart! A couple years ago, JDRF funded SmartCells‘ development of Smart Insulin, which made good progress. They completed proof-of-concept trials, moved into pre-clinical trials (happy mice!),
and were acquired by Merck in December of last year. Whither Smart Insulin, whose patent now belongs to Merck?
Comments scrolling by during the webcast expressed doubt about whether Merck would bring Smart Insulin to market. There’s some reason to be hopeful. Merck has two Type2 drugs (Janumet & Januvia) that lower insulin resistance: Smart Insulin would be a great complement, and the T2 market would ensure the financial incentive.
Back to JDRF’s GRI Prize: participants will transfer IP rights to JDRF, protecting the IP even if the company is acquired.
And they’re crowd-sourcing the idea (partnering with InnoCentive) – we can all get in on it!
You have till mid-November to submit your ideas (know a smart chemist?). Maybe Diabetes Mine can get in on the crowd-sourcing as well!
This weekend, instead of enjoying the very last day of sun in Seattle, Erik and I went to JDRF NW’s 6th annual Seattle-Sweden Diabetes Awareness Day - and were so glad we did. The event brings top researchers from the US and Sweden together to give updates on their work, much of it immediately applicable to daily life with T1D. JDRF recorded all talks and will post them online, but these pieces of information were highlights for me (most of the talks focused on kids, so apologies to adult PWDs):
- 2-3 years after diagnosis, most kids are still producing insulin and c-peptides
- Overall A1Cs have been steadily dropping over the years
- Daily exercise lowers A1Cs on average by 1 point
- Based on genetic and antibody testing, we can now predict development of T1D with 60% accuracy (another study had 85%), and onset can be delayed by up to 4 years. This would hugely cut down on the # of kids who are in full DKA by the time they’re diagnosed (50% of kids under 2).
See TrialNet on how to get screened.
- Only half of T1 risk is genetic (at dx, only about 90% have it in their family) – the rest is environmental, which means there’s hope for prevention. One possible trigger may be illness without fever, whic increases the risk of developing antibodies by 3X! Fever actually reduced the risk. When a parent in the audience brought up that using Tylenol with vaccinations seemed to dampen the immune response and asked whether researchers would recommend not giving Tylenol for fevers, the circumspect answer was essentially “Yes.”
- There are many brilliant, humble, passionate researchers around the globe working and collaborating on detection, prevention, management, and a cure. Obvious, true, but it makes an impression to see so many in one place on one day.
Dealing with Lows (esp. after exercise)
- Night time really is different: even children without T1D have a blunted response to (mild) hypos during sleep.
- One hypo puts you at risk for another, because the liver’s glucose supply has already been tapped.
- The night after exercise, hypos usually occur betwee 12-2am.
Suggestion (for pumps): use -20% basal from 9pm – 3am, and suspend or drastically lower basal during exercise. And (as MDI users know), eat protein before bed – it turns to sugar overnight and helps buoy BGs.
I love how much data the Swedes have about T1 (the CDC has just started tracking it)! All kinds of interesting points came up:
- A1Cs by city vary widely, which shows that higher A1Cs aren’t just the individual’s fault. Heatlth care policies have huge impact (shocker).
- Most children are diagnosed during fall and winter. They didn’t suggest a reason, but there’s annecdotal evidence that abrupt temperature changes from warm to cold may trigger T1. There’s a theory that diabetes in humans may have developed during the Ice Age as an adaptation to extreme cold, with higher blood sugar preventing frostbite.
- There are gender differences that need to be understood:
Girls have a higher a1c than boys right from the start, but the difference disappears (oddly enough) by the time boys and girls are 15 years old.
Men are more likely to develop complications.
What’s unique about WA state
- WA and CO have the highest rates of T1 in the country (a vote for sunnier climes)
- WA state is hardest place in the country to get CGMs and even pump supplies . For whatever reason, insurance companies push back harder here, and there are many hurdles to jump through. (This year’s HTA fight was just one example.)
Something to keep an eye out for:
- Dr. Hirsch gave a very unsettling talk about “biosimilars” (generics): In the next few years, patents for most insulins now in use will expire. Insurance companies will be pushing for people to use biosimilars, but the FDA rules around production are so vague that it’s not clear in what ways biosimilars will be allowed to vary. “Would you give a biosimilar to your 3 year old or 80 year old grandmother?” Dr. Hirsch asked. “I wouldn’t.”
The latest on the Artificial Pancreas (Aaron Kowalski):
- The Medtronic Veo (which shuts off insulin delivery when blood sugar is low) is available in every single country that sells pumps except the US! 50k Veo pumps have been sold outside the US, with no incidents of DKA (as the FDA fears) and many of hypos averted by shutoffs.
- The next step in the artificial pancreas would be predictive algorithms, which research has shown prevent 75% of hypos. With A1C of 6.5, for example, you’re spending 1.5 hrs of day low – reducing that by 75% would mean just 20 minutes a day.
It Takes a Village
- An international NovoNordisk Dawn study found that family & social support are the key factor in living well with T1D (having lower A1Cs, less depression, etc.). This runs counter to the traditional view that puts the onus of responsibility on the patient, and it makes sense that the burden is more easily carried and better dealt with when shared.
There were a few laughs…
- There was a dark laugh at mention of the WA state HTA’s assessment that the impact of blood sugar testing was controversial, and that frequent testing lead to depression and hurt the fingers. I learned more about the back story: the state’s committee had actually done a comprehensive data review, but because the reviewers had no diabetes expertise and were looking primarily for cost savings, they didn’t draw the right conclusions. Fortunately, experts (and parents, PWDs, and the JDRF) had a chance to submit research and testimony that turned around the decision.
- If you’ve ever heard Aaron Kowalski talk, you know about his obsession with diet soda. Throwing his arms wide at the conference (held at Microsoft) and gesturing to the fridges stocked with free diet soda, he grinned, “I love this place!”