Pump Day!!!!

So pump day was yesterday and what an eventful afternoon!

The morning wasn’t so great; he had very high blood sugars through the night and into lunchtime following advice to only give one unit of Lantus when he usually has 3; and we had anxieties about how much insulin to give so as not to mess things up for the afternoon.

Pump training wasn’t as intense as I imagined – but having to keep a 3-year-old occupied and take everything in was nearly an impossible task.

We nearly saw some tears when it came to the cannula (same as the first Dexcom insertion) but he soon forgot about this because he told me: “orange juice will make me feel better”. Then when it came to doing a test bolus, he got to eat two chocolate biscuits which, naturally, he found really easy.

I think we have taken everything on board but I’m sure time will tell, especially when it comes to set change day on Thursday and then every 3 days going forward.

After the training session, we all went for a cheeky Nandos to celebrate and test out the pump – or Mandos as Will calls it. All I can say is: WOW! It was so much easier to be able to do multiple Basals (starter/main and then again for dessert) and much less messing about with him and asking him to sit still and wait etc.

By bedtime, he had totally adapted to having his cannula and pump attached and was excited to go back to pre-school and show all his friends – as well as the staff.

It was mainly positives that were taken away from the day; fewer injections, more accurate dosages; TBR’s & ability to set varying basal/bolus rates depending on the time of day etc.

BUT…The big BUT is that we have to go back to finger pricks for meal times. The way the Accu-Chek Insight works means it requires a blood sugar reading before each bolus, this in itself is not an issue. The issue is that this BS reading cannot be manually entered and has to be entered via the meter – therefore, a huge frustration as we can’t simply enter readings from the Dexcom. My wife is unimpressed and feels the Dexcom is now a bit of a waste of money… but I know things are coming that will end finger pricking once again.

There is a rumor that a new App may enable this option but, at the moment, all we can do is wait.

Pre-pump weekend

So, today is Friday which means it’s only 72 hours until we get the pump fitted and we are all very excited. William has been telling his friends and teachers at pre-school all about it and how he’s looking forward to fewer injections and more cake!

Over the last few weeks, we have been getting him used to his pump belt so that having to wear it 24/7 on Monday won’t come as a huge shock to the system.

Week one; no luck at all with him wearing the pump belt and he would only wear it on his head. Finally, with some encouragement and bribes (dextrose and fuzzy felts being kept in the belt) he agreed to wear it during the day. Not wanting to push our luck – we stuck with this for a week.

The second week; again no luck with him wearing it overnight; so further bribes this time came in the form telling him he could put some toy dinosaurs in it. He kept it on overnight and has yet to take it off. Win!

Yes, it does get in the way at times (especially when it comes to him going for a wee) and I think I will be ordering a spare soon (should any wee related accidents occur).

A big thank you to Tracey who runs Pumpalicious, the belt is brilliant and the Paw Patrol design makes it even better for him to wear. I’m sure we will be ordering many more to match his interests and TV shows as he grows up.

DVLA Embraces T1 Tech

With the recent mass adoption of CGM and flash glucose devices, drivers with type 1 diabetes still have to manually check their blood sugars using conventional methods.

The new guidelines have now been updated to include BS readings from CGM and flash glucose devices. However, these guidelines only cover conventional drivers and does not cover HGV or bus drivers. Hopefully, there will be a step towards covering all drivers in the not too distant future.

Nikki Joule, Policy Manager at Diabetes UK, said:
“The new guidance, which means that Flash Glucose Monitoring and Continuous Glucose Monitoring can be used in driving, is a major victory for people with diabetes.”

Further information can be found via the DVLA here

New CGM from Ascensia and POCTech

There has been a recent announcement that a new CGM from Chinese company POCTech & Ascensia will be released at some point this year with clinical trials under way.

Ascensia have entered into a global alliance with POCTech with he CT-100 is already available within selected markets. Ascensia will commercialise and have distribution rights in 13 markets where POCTech does not yet distribute, They have also agreed to co-develop next-generation products which will build on POCTech’s existing technology.

Their first CGM available in these 13 markets will be the CT-100B using their ‘Unique 4 electrodes sensor’ to improve accuracy and reliability. A second feature of this CGM is that the transmitter has a replaceable battery. However, the drawback being that this needs to be changed at every sensor change which, at the time of writing each sensor only has a 7 day usable life.

I’m sure both the sensor life and battery replacement frequency are soft limitations and will be extended by the WeAreNotWaiting community much like the Dexcom G5 and G6 products.

No official pricing has yet to be released for the CT100B but rumour is that pricing will undercut the Dexcom G6 drastically ensuring a quick adoption in the CGM market.

Known specifications at present are:

  • 30mg/dL – 450mg/dL Sensor Range.
  • 7 Day Sensor Life.
  • 2 year Transmitter Life with weekly CR16320 battery replacement.
  • 2 year Receiver life with built in rechargeable battery.
  • Pricing: TBC

User Manual

What are these numbers?

So it’s now been ~10 days since we first started using the Dexcom G6 and what an insight this has been.

10 days of stats that mean absolutely nothing and, if anything, make trying to understand T1D even harder! Out of the randomness of the past 10 days, I have noticed a few things. He has:

  • 2 or 3 unknown hypos a day
  • Long high periods overnight
  • Very sensitive to insulin and sugar

It seems that he was having around 2 or 3 hypos a day that were getting missed but, obviously, now with the Dexcom, these are being treated correctly. We tried decreasing the insulin at meal times and he then went the opposite way into the mid/high teens. What doesn’t help is that due to being on MDI we can only give 0.5u increments of insulin which seems to be able to drop him from 18 all the way down to around 2.5 in 60 mins or less.

Low Blood sugars, 4 in less than 6 hours.

So looking forward to the pump now! Not saying this will be the cure of all cures but having the ability to micro-dose in 0.01 units will be amazing! Along with being able to correctly dose for carbs, we will also have the added bonus of being able to set TBR’s – should he look to be going low or high.

Again this should help tackle his high periods of overnight highs; we can put him to bed on perfect numbers and three hours later he is as high as a kite…. only to come plummeting back down as quick as he went up. Knowing that giving a correction in the night would result in a nightmarish situation of night-time hypos.

Overnight High

Dexcom Day

So after giving in and waiting for the individual funding process/decision from the NHS Trust. We have decided to self-fund Dexcom for a few months to get a feel for it and get some numbers together to further help with the individual funding case with the Trust.

First impressions are really good, very simple clear instructions, very user friendly app which guides you through each step of the insertion and configuration.

William on the other hand was far from impressed about having this thing attached to his arm. No tears or major pain from the insertion just a little moan and manly complaining about what was now semi-permanently attached to his arm, nothing that a bribe of Calpol couldn’t resolve.

We are now two days in and hes accepted the fact that this is now part of him and will be attached to him for a very long time; i suppose its like a tattoo or piercing, slightly annoying and weird at first but you soon forget that its actually there.

The thing he has yet to adjust to is no longer having finger pricks to check his blood sugar levels, its been part of the routine for the last 6 months its hard for him to understand why we have stopped all of a sudden.

The Numbers at the moment are shocking, it seems like the week we decide to set this up is the week we are having numbers from hell even just looking at the times we would manually check. Hes just bouncing from high to low back to high. Some of these would have been missed without and has made me realise how many hypos/hyper’s we have actually missed especially as he has no awareness of what his bloodsugars are doing.

Williams blood sugar for the past 24 hours

We are trying not to micromanage or make any major adjustments over the first week to try and get a real understanding of what his blood sugars are doing especially around meal times and when he is at pre-school. Its making me see the real benefit of a pump too being able to temporary decrease/increase his background insulin when needed to keep his BS more consistent and i’m sure ill go into more details when we get the pump.

Q and A

Below is a collection of the many questions and hopefully answers I’ve had on the T1d journey. If any are blank and you know the answer please contact me to let me know.

I’m afraid many of these will be Tech/Geek questions just because that’s the kind of person i am.

  • Can AAPS be installed and configured without a Pump/CGM?
  • Can Nightscout be installed without a pump/CGM?
  • Does Nightscout work with just a CGM to log data?
  • What happens with AAPS when the phone goes out of range of the pump or CGM?
  • If doing a suspended/temp basal does it just revert this to normal levels if CGM data is lost or the pump looses connection with the phone?

Here comes the TECH!

So after a few days researching which would be the best phone to use for looping i have been recommended a nexus 5x by a few people on the AAPSCombo facebook group, Thanks Guys and Girls!

The phone is a fairly decent spec for the price as I managed to pick one up on gumtree for £50 second hand after the first one i got from eBay had a faulty charging port. Bonus of this is the fully refunded me and I’ve kept the device, only looking around £20 to get this fixed to may use this as a standby device should anything untoward happen with the first.

  • Weight: 136g
  • Size 147 x 72.6 x 7.9mm
  • OS: Android 8.1
  • Screen size: 5.2-inch
  • Resolution: 1080 x 1920
  • CPU: Snapdragon 808
  • RAM: 2GB
  • Storage: 32GB
  • Battery: 2,700mAh

My plan is to get this setup ready for Dexcom(CGM) and Pump….just got many questions including the following:

  • Can AAPS be installed and configured without a Pump/CGM?
  • Can Nightscout be installed without a pump/CGM?
  • Does Nightscout work with just a CGM to log data?
  • What happens with AAPS when the phone goes out of range of the pump or CGM?
  • If doing a suspended/temp basal does it just revert this to normal levels if CGM data is lost or the pump looses connection with the phone?

I do have a million more questions that i’m sure ill get the answers too either by my own findings or the friendly people on various social media platforms, I’m keeping a track of these under a Q&A section of the blog which can be found here…

1000+ Injections Later

So 5 months into our forever lasting journey and would guesstimate William so far has had over 1000+ injections not including the finger prick tests.

Williams T1D 5 Month Footprint
140 Days
80 Hour Sleep Lost
840 Finger pricks
980 Injections
Williams T1D footprint

As each day goes on it does get a little easier and a more integral part of our lives. Don’t get me wrong there have been some very tough times over the past few months including the following:

  • His first sick day where everything he ate came straight back up, was a tough 48 hours.
  • The numerous times where he is being a total jerk and put it down to him just being a toddler for it to turn out he is having a hypo/hyper
  • Days where his blood sugars are fine but hes still being a total jerk and refusing to eat after his insulin injections.
  • The total unpredictableness of T1D in general; same day, same routine totally different blood sugars.
  • The tears and fear when doing some injections along with the discomfort i have to inflict on him for his own good

The hardest bit for me is the unpredictableness of it all, I’m a massive geek/nerd and understand the numbers game totally in terms of carb counting/ratios and when/how to adjust his insulin. Just when you think you’ve got it cracked it just goes tits up and his blood sugars are like the new roller-coaster at Alton Towers (at least those ups and downs are predictable)

I’ve still not fully come to terms with it even over the past 5 months, just being strong for my Son and Wife help me get through each day.

I’m so grateful for my loving Wife being here with me every step of the way, supporting, caring and nurturing. Part of this is letting me have my own space & time just to unwind and get away from things. Some people smoke, drink or have a huge social life but me i use the Gym as that place to switch off and unwind mentally.

From the begining

So the blog…..its new and its only 5 months late.

5 months ago our lives were turned upside down. A visit to A&E for a poorly knee resulted in my little boy William being hospitalised and diagnosed with Type 1 Diabetes. At just two years old, and no family history, this was an enormous shock to me and the whole family.

As any parent with T1D (Type 1 Diabetic) knows there is no time to adjust, let things sink in, talk things through, wait for a letter in the post. Its admission into hospital at that moment in time with insulin therapy starting at the same time too.

Two months on, we’re all starting to get our heads around managing Will’s diabetes. At the time of diagnosis having to inject him at least four times a day and regularly monitoring his blood sugars seemed like a daunting, difficult task. However, he has taken it in his stride and makes looking after him easy. I can’t even begin to describe how well he has adapted to life as a diabetic. 

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