Guest blog: #FreeToDream with Abbott’s Freestyle Libre – by Joanne Hallsworth

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Amy and I recently got an invite to attend Abbot’s FreeToDream event as bloggers but unfortunately we couldn’t attend, so I offered Abbott the opportunity for any of the attendees who wanted to to write a guest blog about their use of Libre or the FreeToDream event.

DISCLOSURE:
Abbott have had no involvement in this article, the words are Joanne’s and only Joanne’s.
No goods/money/services have been received for this article, but in true transparency I can say that Amy will be doing a trial of the Libre and we will blog about that later.

Anyway, here’s Joanne and her story, in her own words…

Our family

Firstly I wanted to introduce my Family. My name is Joanne, I have a husband Graham & we have 3 fantastic kids; Morgan who’s 14, really smart and loves cheer leading; Lily, who is 13 and a competitive gymnast; Archie “the warrior”, who lives and breathes lacrosse and loves being outdoors.
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Morgan

12919591_10207972851532039_1219485698_oMorgan scans her Libre sensor

When Morgan was in year 6, aged 10 ¾ she was diagnosed with type 1 diabetes. It was such a shock I can’t tell you! I didn’t even know what diabetes was if I am honest. At the time I was working full time for Northpoint Mortgage Lenders as a mortgage advisor, but the reality of having to learn all about the illness, the demands, the time off needed, understanding carb counting, insulin ratios and all the new technology that went with diabetes, and not to mention the grief of the life I thought it had taken from her.
It was too much, I gave up work to be the best carer I could be and worked hard to achieve the best outcome from anything the hospital would give me. I read everything, I joined a support group and I took every opportunity to make it as easy for Morgan as possible.
I managed to get in some kind of routine after a year, and found we had accepted it and it would not define her. We got her on a pump and even tried Dexcom from the hospital, but to be honest when we took a well-earned family holiday, the alarms nearly drove me crackers!

Archie

12915081_10207972852492063_353426253_oArchie finds it easy to scan his Libre sensor

In June 2012 Archie wet the bed a couple of times (he had been dry since he was 2), I did a quick keytone test as anyone who is ill in my house gets one! But I never expected it to be positive, he was 4+ and a further blood sugar test on Morgan’s meter scarily showed he was HIGH, not even reading what a lab test told us later was 33mmols! My husband was in shock, he kept saying it couldn’t be true.
Archie was scared and by midnight we were in bed in the treehouse at Stepping Hill having those first doses of insulin! He coped amazingly doing his own first jab within 24 hours and I asked to go home straight away the next day so we could process it as a family. The scales were already in play in the kitchen and the double carb counting began.

Trying Abbott’s Freestyle Libre

12896479_10207972851852047_1555823320_oMorgan checks her glucose levels over the last 8 hours

The sleepless nights have been horrendous, if one is high the other is low, I check them about 3 times per night, but it’s OK because sleep is for wimps !!
A friend told me about Freestyle Libre so I instantly read up and liked what I saw. I put my name on the waiting list and hoped for the best.
We were the most excited we have ever been to see the postman when it arrived.
I wish I could say we didn’t love it straight away – because it was so expensive – but we did.
Almost immediately it became a permanent fixture for both children.The knowledge was power instantly. Seeing the graph that was like a mountain range at best, it was a challenge, so I rolled my sleeves up and got stuck in, a bit at a time working out why it was high or low, picking away at it to make it better, taking back some control. We started pre bolusing breakfast a few minutes a day till we lost the spike and just carried on from there.

Money well spent

A recent high point was Archie’s hospital appointment where the consultant looked in awe at the flat night graphs for 5 days in target range and reported that his HBA1c had dropped from 60 to 52 – all the money we had spent had been worth it!
Morgan’s first appointment went well too – HbA1c has dropped from 69 to 62 (7.8%) – she loves the FreeStyle Libre – proudly doing corrections to achieve a better graph and beat Archie!

A quick video of Archie having a new sensor put on

The FreeToDream sleepover at the London Planetarium

12899506_10207972852292058_1159590851_oArchie scans again, it’s so easy

The icing on the cake was a message from Abbott Diabetes Care, saying that Archie has been selected to join an educational sleepover, the first I am aware of for children with type 1 diabetes, at the London Planetarium! I didn’t even tell him I had entered because I can’t even win a cracker! I couldn’t wait to pick him up and tell him. He has always wanted to go to London so even this was a dream come true for him but it was so expensive to take the whole family. So we ordered an oyster card, studied the tube map and off we went.
When we arrived at the Planetarium diabetes suddenly became the new normal, sugar free drinks on top of the table, hypo drinks below, everyone counting carbs and doing injections. The FreeStyle Libre came into its own again as Archie kept me updated with his scans and couldn’t wait to get off with his new friends and join in the fun. The trip to the stars was sensational, I don’t know about Archie but I felt as excited as a 10 year old after that!
The kids escaped to play games and carry out science experiments, and we found out about the problems we may have with teenagers living with type 1 diabetes. It was hard for some to hear but having Morgan, although she is very sensible, gave great insight into the teenage diabetics mind.
Night-time at the Planetarium was no different to my house, we started with a hypo and soon settled after a bit of Lucozade and a sleepy biscuit.

So in conclusion…

The relief of having a 10 second blood sugar with no pain can’t be measured, and I will do anything to keep it for them.
Archie’s FreeStyle Libre has given him freedom to take control over his diabetes. He can play lacrosse safely 3-4 times per week, as with a quick scan and a jelly baby there is no stopping him.
I can do three lightning scans a night spread over 2 bedrooms and get back to bed before the pillow goes cold.
And Morgan can check her blood quicker than her snapchat!
It’s all good here!

Abbott Freestyle Libre, Nightscout and Glimp #WeAreNotWaiting

We’ve been using Nightscout on and off for a year now, since I built our xDrip in January 2015. It’s been a brilliant tool and has helped reduce glucose levels, whilst evening them out too and giving us a safety net during the night. It’s availability on any browser, smartphone or smartwatch is just brilliant.

A friend whose daughter has used the Abbott Freestyle Libre for a year had followed our progress with Nightscout and told me how she would love it but just couldn’t see her daughter switching to DexcomG4.

It got me thinking.
I wondered if Nightscout could be beneficial to a Libre user and it suddenly dawned on me that it would be very useful for kids/parents in a preschool/school or sleepover situation: wouldn’t it be great if the school carer or sleepover parent could just scan the child’s sensor and the parent would remotely get to see the current glucose situation. If things are on track the parent can relax, if not they could perhaps call or text the person caring for their child.
Yes, using Nightscout with Libre had many possibilities.

It got me searching to see if there were any phone apps which could scan the Libre sensor and get the data onto a NFC compatible phone, that’s when I found Glimp. Glimp can already save data to Dropbox which means its developer, Carlo, is well versed in using cloud storage, Nightscout could be added if he had the time.
To use Glimp you need an Android phone with NFC compability, many Android phones have this feature…although typically not mine (MotoG 2nd edition).

Is anyone using Glimp?

I joined a Libre group on Facebook to ask if anyone already used Glimp. There were quite a few responses, many seemed keen on the potential.
anyone using glimp

Hey Carlo, would you mind…

A few days later I sent an email to Carlo who responded with much interest and started looking into Nightscout.
Email exchanges meant I could point Carlo towards the Nightscout API documentation and get John Costik and John Stevens on standby if Carlo needed assistance.
He didn’t.

A work in progress

Carlo was great at keeping me updated with his progress, which I passed on to the Facebook group.
It really didn’t take Carlo long to get data into Nightscout and by 18th December he’d emailed me some images to show others.
carlo is not waiting

The first results

On the 27th December – merely a couple of weeks after Carlo had all the Nightscout information he need – Carlo had it all working. It was time for a big announcemnt.
I was amazed at the number of people who wanted to test it and get Nightscout up and running.
glimp testers required

An untapped demand

In the next couple of weeks more and more people were setting it up, testing it and really loving it. There were a couple of reports of sensors dying but very few in comparison to the number of people using Glimp.
Parents really see a benefit in connecting Libre to Nightscout and that’s what this was all about.

Fancy using Glimp to get your Libre data into Nightscout?

You can find Glimp in the Google Play Store.
You can find the documentation on setting up a Nightscout web site and database at http://nightscout.info.
Once Nightscout is set up you simply going into Glimp’s settings and enter your Nightscout web site address and your special API key you set up during the Nightscout install.
And the best part? Everything is free.

Thank you Carlo

I can’t thank Carlo enough for linking Glimp to Nightscout, he really knows how to Pay It Forward.

Setting up Glimp and Nightscout

If you would like to set up Glimp and Nightscout please take a look at the guide Amy Cowen has done: Nightscout for FreeStyle Libre