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Diabetes Awareness Day – North Staffordshire

I was invited to speak about living with Type 1 Diabetes at North Staffordshire Diabetes UK living with diabetes day, which was yesterday.  The North Staffordshire group did a great job of providing lots of different information stalls which people could walk around.  Lots of volunteers were there helping out on the day.  There were free health checks such as blood pressure, weight and even a stall where you could have your eyes photographed for a quick retinopathy type picture.   What was really great too was the stalls included a DESMOND store, which helps with food adjusting, a medic alert stand displaying some of the jewellery available.  A podiatry team, the diabetes UK stands and lots more.

I was able to talk to the medic alert stall as my mum and dad have paid for my membership since my diagnosis.  I have a dog tag style necklace now but have had various sports types bracelets in the past.  There are lots of different medical alert jewellery available at different prices not just from medic alert.  My mum and dad told me that they like this service though as they can translate medical information in lots of different languages so when we are abroad on holiday it is good to know that translating my medical information would not be a problem and everyone understands the symbol.

In the next room to the stalls there were various talks during the day.  The Lord Mayor of Stoke and the Mayor of Newcastle under Lyme opened the talks.  They were very nice to chat too and I asked if those chains they wear around their necks are heavy and if they got back ache!  The first talk was all about eyes from Staffordshire diabetic retinopathy service and a lovely man named Andrew Brown.  My talk was next.

I told everybody that I try not to let my diabetes interfere too much but it does.  I would give anything not to have diabetes but I have, so I have to make the best of it and I can do that by helping with awareness.  As much as I want to be like my friends my body is not like theirs.  I explained that although I can do things like scout camp, when my friends are all eating chips and drinking hot chocolate late at night they are fine but when I did that to be like them my bloods went so high my meter couldn’t give a reading and I was sick.  My friends dont have to think about what they eat and drink, I have to think about how to bolus and what to bolus.  That makes me sad.  My friends dont have to think about carrying a testing kit and if they have enough lancets, strips, if the meter is charged up or if they have enough hypo treatment.  They dont have to worry about carb counting and if the food and drink is a fast acting or long lasting carbohydrate.  It does upset me as I am different.  My friends dont have to worry at school, I have to deal with everything they do but manage my bloods the best I can too and if I go high or low I am not thinking about my lessons.  What i can do though is share my experiences to help others understand.  My mum has always told me that everybody is different so I am doing my best to learn how to be like my friends but in a different way.

The next talk was from the research director of Diabetes UK – Dr Elizabeth Robertson.  Lots of things being studies to help everybody with diabetes.  Then Professor Hanna a endocrinologist (I had to check that spelling) gave a talk.  There was then a panel at the end which included everybody that gave a talk and the podiatry team.

I made a new friend yesterday too.  I wont name him but he has Type 1 Diabetes like me but he is a grown up.  He seems confident with his carb counting and with maths so that gives me confidence too that I will also get better at this as I get older.  So I want to thank him for showing me that.  Between us we ate a load of grapes that were provided for snacks but our bloods didnt go too high afterwards!  My mum told me she had been talking to a lady who’s little boy was diagnosed with Type 1 at the beginning of the year and is thinking about an insulin pump for him.  My message for her is that her little boy will be ok because she is helping him by learning about diabetes.  He could even come and give a talk like me in a few years time!  Its hard at times but it does make you more determined.

I have added a couple of photos – one of me giving my talk and the other of me sitting on the panel with Dr Robertson and Professor Hanna.  I am sorry to everyone else on the panel but my mum only took my pic so you are missing off it! My mum is hopefully going to be sent some of the official pictures so I will update my blog with those too!

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Tree of Life – UCLH

Yesterday I travelled to UCLH with my dad to go to their tree of life day, which is organised by their psychology team for children in their diabetes clinic.  My dad was told he had to drop me off and collect me later in the day.  There were members of the psychology department there and peer mentors – who are older teenagers who go to their diabetes clinic.  It was here I met Jess & Ellie, as they are older they have twitter accounts @ellierosehuckle and @Jess_Burton3.  My dad wont let me have a twitter account as he says I am too young yet, but if you are older they are worth a follow.

I really enjoyed the day and would recommend it, as it is a good chance to meet other boys and girls with diabetes and to get top tips from the peer mentors who have been through what I am now.  There is an awards ceremony at the end where we celebrate each other and my dad could watch.  He was shocked to find out I want to be a pyrotechnic expert when I am older.  I would also like to be a peer mentor when I am older and give talks about growing up and having adventures with Type 1 Diabetes.

As we live so far away from UCLH we had some time left before we had to catch our train home.  My dad took me to M & M world after walking through Chinatown.  He was in need of psychology support after paying £24 for a bag of M & Ms and a fleece blanket.  On the way to the train station we walked past a club called Spearmint Rhino, I though it looked a nice place for a drink but my dad was in a hurry so we didnt go in.

I have broke up for the school summer holidays and have quite a bit to talk about so will update again sooner than usual.

If you any questions give me a shout!

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Carb Counting, Input Fusion.

Hi Everyone,

I did promise to chat about carb counting.  So here it is:

Carb counting is important as it helps us alter our insulin.  It takes practice.  If I went to a restaurant with my family I would still need help working out my carbs.  At home though my mum and dad get me to work out as much as possible.  At home it is easier as I can look at packets and have scales to weigh food.

What else can I tell you about?……….

My mum took me to the Input Fusion event in Manchester yesterday.  They had lots of stands I could be nosey at, there were lots but the main ones were;

Diabetes UK  (hi Libby!!)

BD Microfine (I had a play with a fake tummy with lipo lumps – I will talk about that another time).

Pump companies; Cellnovo, Animas, Roche, Omnipod, Kaleido, Medtronic.

I liked looking at all the different pumps.  I am hoping to change my pump soon so I asked some questions to all the pump companies.  Roche can only be used with Novorapid insulin and there are no plans for this to change for the near future.  Cellnovo has a built in activity tracker so if you have hypos and don’t know why, it stores when you have been most active to help identify patterns.  I like the Cellnovo handset and this is my favourite bit – you can add your own food database, so if you have same size meals (which we do) i can add the meal and don’t have to remember the carbs. The pump is quite small so no-one would need to see it unless I wanted them too.  I didnt speak to the other companies just looked at their stands so cant really tell you much more about the others.

I have clinic on Tuesday, so will be telling them all about it.

See you soon.

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X-Drip Chat

 

Hi Guys,

When I go to clinic my consultant is pretty cool and accepts that I use x-drip to view the data from my Dexcom.  I think he secretly likes gadgets as much as my dad and I!  Anyway, as it helps me so much I thought I would share a video about it.

If you have any questions please let me know and I will try to answer them or ask my dad the answer if I don’t know it.

I also have an idea for my next video which will be next week – its going to be about carb counting.  My hope is that it will help other children, teachers or hospital staff understand some basics.  I still need help myself with some things so it will be the stuff I can actually do, I suppose we could learn the rest together?

Any video requests let me know.  See you soon.

 

 

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Libre Update V Dexcom/Medtronic

Hi Everyone,

Its been 2 weeks since I tried the Abbott Freestyle Libre.  Time to give my opinion…..

  1. As I said earlier the Libre wins when it comes to how easy it is to use as I can insert it myself.  I need help with Dexcom and needed help with Medtronic.
  2. The Libre has lasted the full 2 weeks it is licensed for.  I can get 19 days use out of Dexcom (although its licensed for 7 days).  When I used Medtronic with Veo the most I managed was 9 days (licensed for 6 days) and there is absolutely no point mentioning Medtronic when used with 640G as that didn’t matter what it was licensed for!
  3. Alarms – both Dexcom/Medtronic have alarms and Libre doesn’t.  It is good not having alarms as I don’t get bothered when I’m playing Xbox but I have no hypo/hyper awareness and so for me I need alarms else I would be 1.9 before anyone realised I needed help or I would be 30+ before I started feeling sick.  (Mum just asked me to swipe Libre & it said I was 3.7, I tested & I was 3.7.)
  4. Accuracy – I have to tell the truth, the first 2-3 days with the Libre wasn’t brilliant saying I was low all of the time when I wasn’t but its been great ever since.  What’s amazing is that it is not calibrated.  When my levels are steady it is pretty spot on, it can read lows a bit lower but that’s not too much of a bad thing as I have to test anyway.  It’s pretty good on the highs too.  The Libre could be trusted more than the Medtronic when used with 640 for me.
  5. Cost – If you have to pay for the systems then Libre would be the best choice.
  6. Start up – Dexcom/Medtronic both need 2 hours, Libre needs 1 hour.  Libre didn’t track brilliantly for fist 2-3 days but neither did Medtronic for me and the occasional Dex.  At least it doesn’t stop my insulin though!

I am 11 years old and I don’t care about trends and patterns but my dad does.  He has said that the handset of the Libre is very good for giving information about what my bloods have been doing.  He said it would be very good for seeing any trends so changes can be made.

Below is a pic of the Dex & Libre.

libredex

If anyone wants me to ask me anything please do.

See you soon.

 

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Freestyle Libre

Hi Everyone,

I have been asked to give my opinion on the Abbott Freestyle Libre, especially from the viewpoint of a young person (well I am nearly 12).

At first I thought that not having alarms would be a negative as I am used to CGMs that alert (Medtronic and Dexcom).  I can also understand now I am at secondary school that not having alarms and being able to check bg without actually having to test would also be good, as it is more discrete.   So I suppose it could be a good compromise between an alerting cgm and the need for actual frequent testing.

My mum and dad have told me that if you self fund this system it is cheaper than the alerting brands.  It can also be used with other types of diabetes and not just Type 1 and does not need to be calibrated like the alerting systems do.

My first impressions of the Freestyle Libre are good.  I was able to insert it myself, which I haven’t been able to do with the alerting systems.  So I would need less help and support using this system than I do the others.

I am still wearing my Dexcom so I will be able to compare using the 2 systems, but the Libre has definitely won on ease of insertion! I will update before I go back to school but for now here is a video of my first insertion of the Libre;

See you soon!

 

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Minimed Mio 30

Hi Everyone,

I haven’t wrote a blog for a while but I have been busy getting used to high school.  I am still getting used to it and I like some teachers more than others.  I prefer primary school teachers as they seem happier but high school lessons in the science labs and DT are ace.  PE lessons are very different to primary school and I keep forgetting to set a temporary basal reduction and so I often hypo afterwards, but I have at least another 5 years to remember!

I am still using the Medtronic 640G insulin pump and dexcom sensors (with my pebble watch which I love).  I feel happier knowing that I can trust my cgm.  My mum and dad say trust is a big thing.

I have used Medtronic Minimed Mios for a long time but I need to start rotating my sites more than I do already.  Clinic want me to try my tummy but when I do that I either hypo as cannula goes into my muscle or I end up high and have insulin lumps under my skin because the cannula doesnt work very well there.  As a suggestion clinic have asked me to try the new Minimed Mio 30s on as they are angled so should help with the tummy issue.  I will probably still use the other Mios everywhere else but try the Mio 30 for tummy.  The Mio 30 takes 0.7units for cannula fill which I will need to remember as the other Mios I use are 0.3 units.  I decided to film the Mio 30 insertion of me practising on my dad.  I then had a go on myself.  I must admit the Mio 30 was less painful on my tummy than the normal Mio.  I will need to update how well it works another time though as we didn’t realise that the tubing is separate to the cannula packaging so we have cannulas but no tubing! (The other Mio tubing doesn’t fit – I tried).

So for now here is the link to the insertion video:

 

 

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