A DIY diabetes kit

My own experience with using the Dexcom G4 CGM with my 1-year old son was extremely negative. First, it was terrible to insert the sensor -- it is a clunky mechanism which would sometimes fail and leave you with a worthless sensor, and at best would leave your child in screaming pain for minutes afterwards. The sensors would often fail, or start falling off long before their 7-day promised lifespan. The adhesive caused allergic reactions which left nasty red welts, and eventually you run out of fresh places to insert them.

When they were working at their best, you would have a readout which would tell you approximate glucose level, and if you are heading up or down. However, there are no error bars, and errors can be very significant. More calibration (measuring with a strip and entering the measurement into the CGM) is not always better. Sometimes we would find it was exactly correct, sometimes it would be 50 or more points off. You still always have to measure before dosing because the accuracy just isn't there.

The biggest issue we would have is, leaving the CGM under the crib so that it was in-range, and then checking it during the night, many times we would end up with the dreaded '???' in place of a blood sugar reading, and a large gap in the chart. Dexcom blamed the CGM and replaced it twice; the problem kept recurring.

Then, the times when the CGM was not losing its mind or its signal, it would frequently start false alarming -- it does not have a hysteresis algorithm to prevent the alarm from triggering over and over again if you are lingering and constantly crossing over a threshold. As anyone with a young child knows, sleep is a priceless commodity, and unnecessary alarms going off multiple times throughout the night are a total deal breaker.

For a system which was supposed to increase glucose control and peace of mind, the G4, for our 1-year old and us, did neither. Add in the extreme cost ($350/mo for sensors, assuming they all even work) the utility just wasn't there for us. Two G4 Platinums and a few sensors now sit in the back of the closet collecting dust.

We used syringes for almost a year before switching to the OmniPod pump. It is similar physically to the G4 sensor, except it auto-inserts the cannula which helps a lot, although our youngest still cries for a couple minutes after each insertion (every 3 days). A controller acts as the glucose monitor, and also lets you enter in the carbs and it calculates the appropriate bolus. It's a nice system, except the pods also fail early about 20% of the time, they can fall off and leave rashes and puncture wounds, and they waste a huge amount of insulin for children since the minimum capacity for a 3-day pod is nearly 100 units. But it's hard to beat the convenience of dosing for a meal when you're eating out and you just have to push a few buttons.

Modern diabetes management includes either pumping or multiple daily injections (MDI). With MDI, you use a long acting insulin as a basal, or background, insulin. And then you'll use a rapid insulin to bolus for meals and to make corrections for unexpected spikes.

The pump is similar to MDI but you only use rapid insulin and the pump delivers a steady basal stream throughout the day, and you still bolus at meals and for unexpected spikes.

These two things allow diabetics to eat whatever they want.

We did the old school way for the first few weeks because that's the only way the doctors in Vietnam knew how to do it. It really sucked numbers wise.

insur. depends on your employer and 100 other factors. some plans very little cost others maybe 25%. if you are independently employed insur will run about $25,000 to 35,000 per year for the family.

if your son is "healthy" and is a "good" diabetic he can get by on about $6,000/year. this would be if he eats well, moderately active and maintains sugar well. fyi if athletic this doubles or triples amount of insulin consumed. if your son takes very poor care of himself very erratic sugar 100-350 and 5-8 extra trips to the ER and or doctor and you want the top end insulin pump, humalog, humalog pens etc then the cost could be as high as your imagination.

Yes he was DKA on diagnosis. It took them 4 days to figure that out too.

For us the CGM would be about getting rid of and/or minimizing the overnight blood checks. There's nothing more horrifying then sleeping through an alarm now. In fact, that just happened to me. Fell asleep on the couch, woke up two hours past his check, saying "oh fuck" a lot as I run around the house like a headless chicken.

The only CGM we can get out here is the medtronic enlite. Our pediatric endo in Singapore didn't have great things to say about it, which is why we started with the pump. The only pump available to us too is the medtronic series, which, to be honest, has been perfectly fine and man what a game changer. His numbers have really fallen into line since we switched from MDI.

The other things (like infusion sets) should be easy to ship. The UK suppliers generally won't sell them unless you have a UK pump and an account with them, though. It could probably be worked around though, using some sort of international forwarding arrangement.