At Christmas with many, MANY thanks to one of my incredible, kind and generous friends and her business partners at Cambridge Weight Plan. We were able to purchase Carter his Dexcom!
Without the kind, generous, financial donation of these amazing women we would still be here; saving, hoping to achieve this by the end of the year.. I will be forever grateful to them for their help! And will never be able to repay their generosity! ❤
Ladies – THANKYOU! You will never truly understand just how BIG those words are and mean from us! It makes me emotional just thinking how much you have given to us – a stranger! You are so powerful and incredible. THANK YOU from the bottom of my heart! I wish I could stuff you into my pocket so you can truly see just what it means!! ❤
Dexcom is a USA based brand, producing the Continuous Glucose Monitoring System. An incredible advanced tool in the world of Diabetes Management. Predominantly covered and provided by medical insurance in the States.
Very different story here in the UK. Without a severe medical need (massive issues with control, constant life-threatening Hypoglycaemic episodes or many hospitalisations), the NHS will offer no coverage or support whatsoever towards financial support in the bid to attain one of these devices for Type 1 Diabetics – even babies. We had to fund our own. They are expensive but they are worth it. How do you put a price on something like this? Obviously they do, but it’s easily justifiable as a parent. We are an extremely vulnerable group of people. They dictate a price and however unachievable it may be – we achieve it. Because it’s our kids’ lives. It’s just how it is..
THIS IS HOW WE LIVE NOW!
By wearing the Dexcom, the sensor in Carters arm sends a constant reading to his receiver and we can view his blood sugars (blood glucose levels) at all times. Not only that, we can view trends and speeds at which he is rising / dropping or if he is stable and steady. It is a very clever piece of kit!
The sensor (cannula) is injected under his skin into the interstitial tissue with an application gun that houses and then covers the application needle that feed a wire into the skin and then retracts, leaving the wire in place which talks to a transmitter which sends the readings to his receiver (all very clever)..
The wire cannot safely sit in the blood stream, so instead it monitors differently to a Blood Glucose Machine. BUT is extremely accurate once you allow for the slight delay (up to 8 minutes) between blood and tissue. It really is a game changer – amazing piece of kit! Every Type 1 Diabetic should have one. Especially children!
We have found the Dexcom to be incredibly accurate and very useful. In fact, I don’t know how we would ever live without it now.
Carters Diabetes threw me for a loop. 12 months ago as my boy laid dying, fighting to stay alive, my whole world fell apart. I tried so hard to be brave and strong, not only for Carter, but for my 14 year old son Morgan too (who had never experienced anything like that before and had a front row seat to the whole thing). I was broken and beaten and I had never felt as vulnerable or fearful, helpless, panicked and frustrated in my entire life – I didn’t think it was even possible to survive when you felt that way. I didn’t see how we could survive. It was BAD!
Things are getting better for us now – slowly. Once we got Carter stable and home. We battened down, forced the world to wait, regrouped and then we learnt how to live again. How to survive and we work hard everyday to ensure that we do just that!
As you know; we follow Dr Bernstein’s Diabetes Solutions Methods to manage his blood sugar control and maintain normal, safe, healthy blood sugars, by eating a Low Carbohydrate diet – this will avoid diabetic complications developing in the future and Carter can live a long and healthy life as a Type 1 Diabetic.
BUT, it doesn’t take away the hard work, the worry and the fears that take up home in you as a parent and then it multiplies – by the second. I have become a worried, frightened wreck these last 12 months since his diagnosis. At times, I didn’t know how I would survive. Couldn’t see a future. And yet this machine – a piece of crazy technology that most people don’t even know exists: The Dexcom, it has really helped ease some of my fears.
I cannot explain enough – it’s just like turning on a light.
I can see how his body behaves and what food really does inside him v’s the profile of his insulin. How sleep affects him, exercise, worry, fear, school, excitement, illness and general life based on temperature, wind and time. It was like being blind and now I can see. I really, really don’t ever want to go back to being blind. Blind is scary – frightening. Being able to see is life-changing!
The Dexcom changed our lives – saved our lives. It gave me my life back! I could go on – but I wont! To those Ladies who made this possible – please just know that I am forever grateful! ❤
It cost us almost £1000 in the end to purchase all the equipment and accessories Carter needed to get started with his Dexcom. Harsh! 2 weeks before Christmas. BUT again – very much worth it..
The sensors are £53 each and are guaranteed to last for 7 days (1 week). If the sensor is to fail or come unstuck during that time, Dexcom will replace this free of charge. However, you are able to wear the sensors for longer. Resetting them weekly and keeping them stuck is all you need to do and those precious little sensors will keep running – it does actually work out quite cost effective when you compare it to the Freestyle Libre (closest UK comparison) that is the same price but not a CGM. It’s a scanning device and automatically dies after 14 days. Dexcom wins!
Once you’ve paid out the initial charges for the Dexcom, you can start saving money by prolonging the lives of the sensors – and trust me – you really want to do that! £53 a week is not easily manageable..£53 every 3-4 weeks is doable – and very worth it!
So, Carter’s Dexcom arrived – it was like Christmas! After we got over the initial emotional surge from receiving the donation from my friend (there were tears), when the package actually arrived there were lots of tears, and giddy and happy and dancing and thankfulness – joy! It was just like Christmas – amazing!
You can see from the photo there are 3 components to the Dexcom:
The Sensor: This is injected and sits as a cannula – a thin wire under his skin down into the fatty tissue and measures the glucose levels of interstitial fluid.
The Transmitter: This clips onto and sits always on the sensor and sends the readings from the sensor to the receiver for viewing.
The Receiver: A small reading device that displays the continuous Glucose Levels and is able to be manipulated, calibrated and will act as an alarm and assistance when levels are out of range.
The new Dexcom G5 system doesn’t necessarily require a receiver because it will transmit directly to your iPhone/watch but there are huge additional financial commitments that I wasn’t able to accommodate right now (pauper student nurse) AND, as I’d read a lot about these devices. I firmly believe that for now, the G4 is exactly what we need (and I have been right – and extremely grateful)!
You can hold the cursor over these photos or click on them individually to read a clearer explanation of what each component is and how it works:
Injecting Carters first sensor was a little nerve-wracking! I hadn’t done it before nor did we have any training or support. As we self-funded, the NHS do not provide any help.
I managed it, I was nervous and unsure but I didn’t want to hurt him or screw it up – so I sucked it up and I went for it. It was fine 🙂 and I got the patch on pretty straight for a 1st attempt too.
I’ve found using GriffGrips or RockaDex Patches and SkinTac helps secure the sensors so much better. We can get 1 week out of a patch by keeping the edges secure using SkinTac. They even handle swimming and exercise pretty well.
I found some cool cases for his receiver and an arm band for school on Tallygear. They are really cool and well made stuff. But, they are expensive and postage costs (international shipping) is a little bit too much, especially if customs intercepts the parcel. We ended up paying £40 in postage alone for the Tallygear order, it was just ridiculous. But, worth it to keep the devices safe and help prolong their life-span.
I see a huge business opportunity here. I’m pretty handy with a sewing machine. If I could just find the time and the confidence to knock out anything decent; the UK Market is so minute. I could have a lovely, sweet little business and NOT rip people off! I hate that the ‘essential accessories’ that we really do ‘need’ are so expensive – just because they can be. It’s greedy! I don’t like that. I want to change that *dreams* … One Day!!
So, anyway. Back to reality: the sensor is on.
It takes 2 hours to warm up and then requires 2 separate blood tests to calibrate itself and ensure it’s reading at the correct levels as per the Blood Glucose Meter. It’s a simple procedure – Carter can do this himself no worries.
We’re up and running. It’s looking good so far:
What Dexcom also offers is an online data-dump where you can plug the receiver into your computer/laptop and it will pull all the data allowing you to view the Profile. It shows Trends, Average Blood Sugars and Standard Deviations from the Mean Average. It shows individual, daily readings and allows you to set your own parameters for the Dexcom receiver too.
I set Carters from 3.8mmol to 5.5mmol. That’s the range we aim for. I will correct him with insulin if his blood sugars are rising above 5.5mmol. The Dexcom has a slight delay to real-live blood tests, so if he’s 5.3mmol on the Dexcom, I know he’s probably around 5.5mmol by then and will go ahead and administer insulin. However, I will always confirm with a finger prick to a) treat a Hypo and b) administer insulin. The rule of thumb is that any reading
It is accurate and brilliant but there is always an element of inaccuracy and room for error with any technology. I’d hate to be guessing and then be totally out. That could be very dangerous. I double check the Dexcom as often as I trust it. It’s fine. It does do what we wanted it for and it does make his life easier at home and at school and it does save him finger pricks throughout the day. Mostly it allows him more accurate control. It’s just fab!
I pulled off Carters reading after the first week and was pretty happy with how it had gone:
Other than a crazy spike his levels remain very consistent and flat. I can dial this in further to review day by day numbers. It really is very helpful.
As you can see from the readings above. Carters Blood Sugars are VERY stable now. We achieve this for him by being consistent with his insulin and knowing exactly how the insulin behaves in his system based on his health, activity, food and hormones. Mostly it is because we do not eat sugar or carbohydrates. And yet: my boy continues to grow and thrive! He is 9 and he is almost 5ft! a UK 6 shoe! With a healthy BMI, strong fitness levels, a stable persona and generally – healthier – happier and safer!
He is thriving and healthy and has NORMAL Blood Sugars! His A1c was 4.9, after Christmas and after battling a cold/flu virus, it raised slightly to 5.2. Still, safe, healthy, normal non-diabetic numbers. I feel lighter – less troubled and he is a whole world apart to how he was 6 months ago.
You can also see that I make meticulous daily charts to view and record his readings. This way I can monitor for trends and identify potential issues before they become a problem. I can also monitor how protein affects his blood glucose readings and as we currently have no access to a suitable slower acting insulin that would cover protein in his digestion process. It is important that I keep a close eye on this. It makes my life harder and it’s another job I have to do but it’s how I keep him safe and healthy in a world where his health unfortunately doesn’t come first to the professionals who consistently refuse to prescribe him a more suitable – safer insulin!
Thanks to the Dexcom and Dr Bernstein and TypeoneGRIT and the stringent monitoring and knowledge we have empowered ourselves with AND Carter himself: (his determination and bravery towards his own disease and health is exemplary for a 9yr old child) he is thriving and safe and no longer a victim to his disease.. He is amazing! Because of all those things, we can achieve stable and safe blood sugars for him – and that’s what it’s all about. This is how we live now..
Here are some more of Carters readings so you can see how the Dexcom behaves and how his blood sugars are safe and steady and more importantly: that this IS achievable!
There is NO EXCUSE to feed a child chips and crisps and bread, then let their blood sugars run so high that they fear for their own lives.
It is so much easier than you think.
As well as using a pump band to keep his Dexcom receiver with him at all times (it has to be in range to the transmitter) at school. Carter also has a Carribena Clip attached to his Tallygear Case that he uses for general every-day. He also has an iPhone waistband for cycling and an arm band for PE. We’ve found it pretty easy (expensive though) to keep the Dexcom safe and incorporate it into our lives seamlessly.
We LOVE it!
We respect it and cherish it. I really hope you get a chance to get hold of one!
After 3 weeks, his 1st sensor came off. It would have to happen when I was at work. He was upset and frightened. I spoke with him over the phone. Talked Greg through removing the remaining cannula safely and told them to wait for me to get home the following morning and I would site him a new one.
You can see how it had lifted from his arm:
He had knocked it out playing with Teddy in bed (his cat), not a massive problem – we’d had 3 weeks out of it. It was still running accurately AND I had just changed his patch (I usually change them out every Sunday for him). BUT, it was OK, he hadn’t done anything wrong. The main thing was that he was safe, the wire had come out of him fully and he was not hurt.
The next morning we had super massive hugs, breakfast in bed and I set about changing his sensor for him. I was nervous – went back to Diabetic Danica’s video for reassurance and then I went for it:
The Football Skin has been great for protecting the receiver. I don’t recommend the same thing for the transmitter though. They are pretty pricey AND we’ve had 2 that have literally fallen off and been lost within 1-2 days. Just don’t bother with those anymore.
I do ALWAYS lay out all the equipment I need for changing a site or patch first, before I start. That way I am better prepared and know I have everything to hand so I don’t have to break off half way through and cause any kind of risk of infection or discomfort to Carter.
We treat it like a medical procedure – because it is!
The sensor is inserted under the skin with a massive needle – you just don’t see it because it’s sat in the gun – trigger part. If you could see it, I don’t think you’d be able to do it to your baby. Well, actually you would because the benefit outweighs the 2 second needle every 3-4 weeks. BUT, you know what I mean – constant needles – heart-breaking!
So, here’s what I check I have ready:
TRANSMITTER & RECEIVER
I keep them all in a basket in the dresser where we store his Diabetes Equipment for easy access.
Carter enjoys picking his patch and he’s got a pretty decent selection going on – for now.
One thing Greg does for Carter (that is really, really cool and cute), is he decorates his patches for him. They come plain. So like the bumble bee – he drew eyes and stripes and a stinger for his tail 🙂 …. He drew eyes and teeth on the Skulls, Eyes on the Pacman Ghosts. AND, On the Plain ones he graffiti’s them and writes positive words like ‘HERO’ or DUDE or ‘ROCKSTAR’ or his name…. It’s only a very small thing, probably an oversight to most people BUT the LITTLE THINGS MATTER now. They matter – so much!
And one thing I always, ALWAYS do with a new patch once it’s in place, is to cover it in SkinTac (I’m using a bottle at the moment, I prefer it to the wipes and the sponge applicator is helpful). I rub it round the edges of the patch and then he lets it dry before putting a top on (so it doesn’t stick to him). We find the edges don’t lift as quickly by doing that.
We seem to have found our groove with the Dexcom, It’s fitted perfectly into our lives and I can’t imagine a life without it.
He’s just had his 2nd Sensor change – eventually after a certain amount of time the sensors will start to die. They can’t last forever even though some people claim to get 6-10 weeks out of them. I’d like to know how, especially on a child. But I’ll take what I can get.
It’s suggested that the more stable the wearers Blood Sugars and less peaks and troughs in highs and lows, the longer a sensor will last. You can recalibrate if it starts loosing accuracy but over calibrating can be just as dangerous. If the sensor is well-out, you can reset the algorithm by performing 3 calibrations at 15 minute intervals and this will pull it back inline. I find I have to do this maybe once a fortnight or after a bad few days or activity and hypo’s, or if the weather’s bad, or if he farts more than 4 times on the trot (you catch my drift).. You’ll know when a sensor is coming towards the end of it’s life because you’ll see the ??? on the screen more and more frequently.
Carter just had a bad week of blood sugars (I say bad, to most people on a high carbohydrate diet it’s probably still good – to us, it’s bad). His average BM shot from 4.7mmol to 4.9mmol in 1 week! and we had a few spikes in there too. He’s growing (hormones) and he had a virus – he had an immediate, huge requirement for additional insulin and I couldn’t give it all at once. It needs to be administered gradually as to not throw them into a severe hypoglycaemic state. So, a few days of wonky numbers and the Sensor nearing it’s end-life – It was time to change.
He took full advantage of the sensor change by running a huge hot bubbly bath! He likes to remove his sensors in the bath because the soap literally soaks it off and he doesn’t have any tugging on his skin. I helped him, careful to remove the transmitter ready to clip it onto his new sensor and I always check the WIRE in the Cannula is fully in-tact and not still sat in his skin. (touch wood this has never happened to us, but I have heard of instances where it has and unfortunately it requires a hospital visit for removal – I need to avoid this at all costs. So, I am careful and I always double check myself – to keep him safe)…
I’ll show you what I mean:
You can see above, the sensor and transmitter is in place (with the patch) on his arm. The 2nd photo (below) shows the sensor and patch with the transmitter in my other hand. The 3rd photo shows the wire from the sensor (that’s been sat under his skin for the last 3 weeks) and yes, by the length of that, I can tell that it’s fully in tact. No worries.. (if it was considerably shorter or shard, there’s a chance it could be left under his skin – be aware of this)..
Time to put on a new one and start all over again:
A Blue Star this week! For my STARBOY! (I really like McFly)..
The Star GrifGrips are a bit shit if I’m honest. Perfect for babies or smaller kiddies. But, we had to use 2… 1 on normally and 1 inverted over the top of it for wider coverage. I secured the edges with SkinTac liquid. It was the only way I could cover the entire Dexcom white sensor pad.
I always ALWAYS go over the Dexcom sensor pad with SkinTac too with each patch change – just to check it’s secure and to keep it stuck down properly.
And, when I’m removing the patch to change it out, I loosen it, encouraging it up slightly – bit by bit – from the transmitter – outwards.
So, I hold the transmitter down on his arm/site and then get my scissors (small) under the gap between the sensor and the patch. Then I lift – lift very gently, tickling a gap, until I can snip my way to the outer edge of the patch and then I can lift it the whole way round. It makes perfect sense in my head. I do it weekly, sometimes more, so I know exactly what I mean. If you’re struggling let me know and I’ll do and small video demo for you 🙂
We LOVE Carters DEXCOM! #cartersdex ❤
We are forever grateful to the Ladies who made this possible for us!
To my phenomenal friend for empowering those Ladies to build their own business’ and be in a position where they are able to help other people so generously – they are changing lives for a living and saving lives for fun – WOW – Powerful Women!
And thank you to Cambridge Weight Plan for giving my friend the power and ability to build up such an incredible empire of powerful women. It’s all very magical and amazing and inspiring – they are amazing! I am Forever Grateful – THANK YOU!!
And to everyone else who is reading this and is already achieving stable blood sugars and flat lines then ‘high-five’ … Well done on figuring it out – finding Dr Bernstein and taking back control of your life.
Probably THANK YOU to you too because no doubt you will have helped us along the way at some point! And, we look forward to being with you on our journey to come….
And to those who haven’t, are unsure, don’t believe it is possible. Believing that you 100% NEED Carbohydrates to survive. PLEASE, believe me when I tell you. YOU DO NOT!
These families – children, they don’t. Look at their results (below). How much healthier they are. How lesser risk their lives are at. This is a live photo from our Typeonegrit page on facebook
YOU absolutely do not need Sugar or Carbohydrates for any matter of survival and you are far better off without them! Especially as a Type 1 Diabetic!
Dip your toes in – give it a month. Ditch the Carbs and the Complications along with them.
Get off the Rollercoaster of high and low blood sugars.
You too will have the same Dexcom profile as my boy – its so much easier than you think.
AND your child / you will be a whole world safer in doing so!
To everyone else: PLEASE: Share this Blog. I never ask, but this one I am begging for your help! PLEASE help me to help others and SHARE this post – anywhere and everywhere!
People NEED to see Carters Dexcom Profiles to know that it is possible.
After what I have witnessed this weekend. The insanely high readings some kids are living with – constantly in their 20’s, suffering – dying!!
These people NEED help! Please help me to help them and SHARE THIS!