Pump Failure!

5 weeks in – and we encountered our first pump failure.

In typical fashion, it happened at the most inconvenient time – just as I parked up at work after dropping him off at pre-school. I then had to drive all the way back to pre-school in rush hour traffic to find this:

Insight Pump M24 Error Code

Google to the rescue! Once I’d double checked what needed to be done with the pump failure, I had to undertake a full set change. At pre-school. Surrounded by curious toddlers. Brilliant. His last set change had been less than 12 hours ago!

We’re incredibly lucky that pre-school are willing to keep spares of everything, including insulin, in their fridge.

So set-change completed under the watchful eye of about 20 toddlers – we have never hidden anything from the children at pre-school and the staff, and I, encourage them to be involved and ask questions. It’s all about raising awareness and curious minds etc.

I think this helps William, too, as he doesn’t feel isolated or excluded, and he gets to show off to his friends. At this young age, we feel that it’s important that he doesn’t grow feeling different – even though he is.

Fingers crossed this set change will last more than 12 hours and we encounter no more pump failures.

DEXCOM FAIL!

Yesterday his Dexcom sensor decided to give up on Day 10. Yes, this is the recommended usage period, but we have been lucky with the last two and they have lasted 20+ days.

Me being a last-minute Larry only ordered his sensors a day previous and we had no spares in the house. WOW, how quickly do you become dependent on the technology? I felt totally naked not being able to see his numbers remotely and even pre-school said they felt like they couldn’t let him out of their sight all day.

A generous person from the Type 1 Community kindly let us have a sensor whilst we are waiting for ours to be delivered. They were such a lifesaver and shows how the community tries to look after one another when favours are needed.



A Quick Update (March 2019)

So it’s been a while since I’ve blogged; but as most of you understand – life just gets in the way sometimes.

It’s been an eventful March so far!

William’s rash seems to be finally clearing up; all that is left is a few scabs from where he scratched a little too much. Currently, we have taken a break from using any lotions, potions, creams or gels to help stick or remove his cannulas and Dexcom patches.

From a Facebook recommendation, we have reverted to using baby oil in the bath, which seems the best way to go at the moment. We may try the new silicone spray once everything is fully healed.

The last 24 hours have been very busy with a Dexcom and pump failure!

Sunday Walk-in

William had a slight rash on Tuesday, but we didn’t take much notice. Sometimes he gets these things and by that evening it seemed to have settled down; but boy was I wrong!

I lifted up his top today and was greeted with, what can only be described as, a stinging nettle rash across his stomach and left arm. They seemed to be fairly localised around the areas of his Cannula and Dexcom.

He’s been using his Dexcom for about 40 days now – so pretty sure it’s not a reaction to that adhesive but to something else. The only thing we can think of, and the nurse agreed, was a reaction from the Zoff adhesive remover.

Zoff Adhesive Remover Wipes

Taking a look at the ingredients I can see why:
Dipropylene Glycol.
Methyl Ether.
Isoparaffin.
Aloe Extract.
Benzyl Alcohol.
Fragrance.

I think we didn’t see this reaction initially was down to us using them in the bath – so any leftover residue was quickly washed away. Any other removals were done in the living room of an evening with a quick wipe down afterwards.

From today, we’ve been prescribed a new remove called ‘Appeel’, which does not contain any alcohol as it’s fully silicone-based. This is much kinder as alcohols tend to be harsh and dry out the skin.

We are going to try this and maybe just stick to using this new remover in the bath/shower – fingers crossed this will stop these bad reactions.

Nighttime Lows

So, from the severe hypos of last week to the constant borderline night-time lows of this week; oh, how nice it would be just to have a simple week without any hospital visits, worries or issues.

I suppose it all adds to the “fun” and no day is ever the same, and even if it is – you start to worry that something is wrong when everything is so right!

Decom App Showing Low Alert
Dexcom App
Hypo Alert

We had a perfect night on Friday due to setting his TBR to 0% for several hours following getting fed up of him hovering on the boundary and the million Dexcom alarms that come with it. YES – I understand he is 3.5 and he is technically “hypo” but he has done this before and stayed there for a good hour. Those Dexcom users amongst us will understand how loud and annoying the alarms can be…and yes, I know they’re that way for a good reason.

Anyway, I digress, this 0% TBR seemed to do the trick very well and kept him at a perfect target range from 11 PM all the way through to breakfast. As you do with anything that works I thought I would try this again the following night…

Fail! By 11PM he was high! He’d gone up to 11+mmol/L (180+mg/DL) so disabling the TBR was out of the question and, instead, I had to give him a correction to bring him down. This did work and, again, he stayed in range for the duration of the night.

Since Thursday, Will’s bloods have been pretty amazing, which, I think, may be down to using AAPS a little more in an open-loop and manually adjusting Basal and TBR’s when prompted. Only time will tell if this is working as expected.

All the Sweets!

So the last 48 hours have been rubbish! Hypo after Hypo after Hypo… Don’t get me wrong, none of these have been really bad but as soon as he comes out of one he is back into another just as quick.

Hypo after Hypo after Hypo… Don’t get me wrong, none of these have been really bad but as soon as he comes out of one he is back into another just as quick.

Breakfast, 6 Dextrose and a can of Coke and he still only went up to 6mmol/L (108mg/dL); usually just after breakfast, he has a sugar spike of 14mmol/L (252mg/dL) and that’s with his correct amount of insulin. But today, nothing.

24 Packs of Dextrose,  Hypo after Hypo

He’s been eating Dextrose, Jelly Babies and drinking mini cans of Coke like its Christmas Day – actually, he’s probably consumed more sugar today that he did on Christmas Day! Amazon saved the day with a 24 pack of Dextrose delivered the same day at half the price of the Supermarkets.

Fingers crossed that tonight he has broken the trend as we are currently sitting at the opposite end of the scale now; too high!! TYPICAL! A few TBRs and small micro corrections and hopefully by the morning his numbers will be back to normal!

Roche making Sparks

Roche have, today, announced plans to enter a merger agreement to acquire Spark Therapeutics.

Spark Therapeutics are a leader in discovering, developing and delivering gene therapies – they are the only biotech company that has successfully commercialised a gene therapy for a genetic disease in the US.

Though this is not directly linked to treatment advancements for people with type 1 diabetes, this move could one day benefit people like my son who have type 1.

For more detailed information on the merger agreement please see the below link:
Roche merger agreement to acquire Spark Therapeutics

JDRF DIY Statement

JDRF UK have recently announced their position on DIY technologies, which are on the rise among the open diabetic community

The Type 1 diabetes charity says it acknowledges the rights of the diabetes community to use such tech systems, but it does not endorse these models.

Loop Hardware
Image Credit Diabettech.com

In its DIY Diabetes Technology Statement, JDRF UK said: “JDRF UK cannot endorse the use of DIY tech systems as these products are not regulated and the use of them may carry risks. The organisation, however, respects the rights of people with type 1 diabetes to choose treatments that best fit their needs and how they manage the condition, including the use of DIY technology.”

DIY homemade artificial pancreases have been created by tech enthusiasts for the past several years with a wider adoption as the hardware/software to do this becomes more widely available. The DIY solution utilises commercial available insulin pumps and CGMs using a third party device/phone to intergrade the two.

The use of these methods has allowed people to enhance their diabetes management and it’s estimated that there are over 100 people using this type of technology.

AndroidAPS
DIY Closed Loop Software

As yet there have been no official clinical studies of these DIY systems but JDRF states “There have been peer-reviewed presentations and publications on the results of DIY systems that have shown clinical benefit.”

These systems have led to improved HbA1c levels and reduced the time spent where blood sugars are out of range.

In 2017, JDRF announced its commitment to aid open-protocol artificial pancreas systems through the awarding of grants to support certain projects.

Important: DIY systems should and have only been used by people who have a stronger understanding of diabetes and IT. It’s not recommended to make any changes to your insulin pump or CGM as this could cause risk to your own health of those you are caring for.

AAPS First Timer

So took the plunge into building/using Android APS over the past few evenings when time has allowed and oh boy…. what a complex beast it is.

AndroidAPS actually working but so many things wrong.

Don’t get me wrong now its built, installed and working with a virtual pump i could repeat the process in a quarter of the time and have a good understanding on what i’m doing and why. I’m sure the real fun part will be using it in a open loop with a physical pump and then fine tuning the settings and going into a fully closed loop

The major errors i had resolved around Nightscout integration, understanding calculations (ISF and Basal rates) another added fact is this was being all configured on a second phone as not to disrupt his existing phone used for his Dexcom readings.

Once the NS profile was setup correctly (plenty of orange warnings) and the AAPS setup was completed it has started recommending TBRs which when we have the pump i will start administering manually.

Insulin to carb ratio (I:C) [g]
Used existing carb ratios or 1u:20g as these seem to be working well and have been for the past few weeks. We do get the odd day where he is high/low but put these down to him having 29g of carbs and still being dosed for 1U, Its so hard to correctly dose when 0.5U is the only option available. Im sure this number will change to something more granular after being on the pump for a while

The Insulin Sensitivity Factor (ISF)
Again with only giving him 0.5u increments of insulin this is hard to work out correctly, following the guide here, he is approx having 10 units of Insulin a day (long and short) which calculates as 8.33 meaning every unit of insulin will drop his blood sugar around 8.33mg/dL

Basal rates [unit/hour]
William is currently on 3.5u of Lantus per day which as a per hour unit works out at 0.15~ rounded to 2 decimal places.

Medtronic Closed-Loop Breakthrough

Medtronic, yesterday, announced it has received Breakthrough Device Designation from the US FDA for its Personalised Closed Loop (PCL) insulin pump system – currently in development.

The PCL technology is designed to automate insulin delivery in a way that is real-time, personalised and adapts to the user; very much similar to AAPS. The system will also provide insights and predictive diagnostics unique to the individual, with a goal of dramatically simplifying diabetes management.

The FDA Breakthrough Devices Program helps patients receive quicker access to new technologies. Under this program, the FDA will provide Medtronic with priority review and communication regarding device development and clinical trials; thus speeding up the time to get new devices to market.

The statement does not specify which devices will use the PLC system but based Medtronic roadmap and the given descriptions it is most likely going to be the 780G and/or 890G. The development of these, alongside the FDA breakthrough, should get these devices to market significantly quicker.

Click the link for the full press release: FDA PLC Press Release

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