Tuesday, August 28, 2012

"So, what do you do when you test their BGL in the middle of the night?"

This was a question asked during a lovely dinner at an old friend's house a few nights ago.

Before I answered her I had to ask myself whether this person really had any idea what she was asking, or, if she really wanted to know the answer to that question...

Oh, and of course, would I risk overstaying our welcome if I took the time to give her a complete answer!

You see, there's no simple answer!

On a good night, if their BGL is in a good range at their bedtime, I will test each of the kids at around 3am and then, after entering their BGL into their pumps and hearing that little sing-song alert to let me know that the pump is not giving them a correction, I will, hopefully, go back to sleep!

We don't get many good nights.

In most cases, the answer to that question goes kind of like this...

If BGL is lower than I'd like it to be at child's bedtime I will usually get them to have something to eat or drink, re-test in 15 minutes to make sure BGL has come up. If they've come back up to a "good" level I will go to sleep until the 3am alarm goes off.

If BGL is still a little low I will stay up a little later, maybe do some reading etc, and check again before I decide to call it a night. If all good, I will, hopefully go to sleep until the 3am alarm.

(it's almost 11:45pm here right now - a BGL of 1.5mmol/L (27mg/dL) at your child's bedtime is not usually conducive to a "good night")

(screenshot of actual BGL reading on iBGStar App)

If, however, they have done some kind of activity during the day that might cause BGL's to drop overnight (soccer, running etc) I will have to set the midnight alarm.

If a BGL is lower than I'd like it to be (but not too low) I will reduce the background insulin on their pump (since using the word "basal" would mean nothing at all to anyone not living with T1D), then check again in about an hour to make sure said child has come up a little - then, hopefully, go back to sleep.

However, if, after an hour, BGL has stayed the same or dropped - depending on how far they've dropped, I'll reduce background insulin again, and check again in an hour.

If BGL is too low (or has dropped to the point of being too low after reducing background insulin) I will wake said child and get them to drink some juice or a chocolate milk; stay awake until I re-test in about 15 minutes - if BGL has come up, I'll, hopefully, go back to sleep - BUT - will set an alarm for an hour later to check again to make sure child hasn't dropped again.

If BGL has not come up, or has dropped further, treat again, wait another 15 minutes and around and around we go.

So, all of that is based on BGL being on the low side.

The other side to T1D is the lovely HIGH BGL's! And on insulin pumps this is something that we have to be very careful about! We have to figure out whether a high BGL during the night has been caused by an incorrect bolus for dinner, excitement, start of an illness, hormones or a potential problem with the pump or the infusion set! 

If BGL is high enough to require a correction via the pump then I will usually set an alarm for an hour later to make sure BGL has come back down into range. And if it has, then, hopefully, I will go back to sleep!

(Screenshot of some of my alarms - gotta love this feature on iPhone)

If it hasn't come back into range after an hour, or if it has gone up I have to decide whether to do another correction via the pump, or - depending upon how high the BGL is, do a site change on my sleeping child! Yep, that involves a needle. Either way, I still have to set an alarm for an hour's time to check again to see what's happening. If all good and BGL coming back down into range, hopefully, I will go back to sleep.

If it hasn't - well, you get the picture.

Then, of course, there's the possibility that a High BGL, after a correction, will turn into a Low BGL - the dreaded roller-coaster ride. On those nights there's not much sleep.

There's one thing that you have to remember, though, when trying to understand all of this and trying to figure out WHY a T1D parent gets up so many times to check on their child.

Insulin is a potentially dangerous drug. 

When we are deciding, in the middle of the night, when we are exhausted and severely sleep deprived, whether we are going to give our child insulin we're not just thinking about numbers and about trying to get our child's BGL back into range. We're also thinking about the fact that we are giving our children a drug that has some incredibly scary side effects. Yes, it keeps them alive, but it also has the potential to do a great deal of harm very quickly.

And remember, I have two kids with T1D - so even if one child has perfect BGL's overnight, chances are, the other won't.

My friend did actually want to understand, and did take the time to listen, so, thankfully, I did not wear out my welcome. We had a lovely dinner and she told that she thinks my kids become more and more amazing each time she spends time with them. 

Of course, not much sleep was had that night after dinner with our friends, you see, the kids and I had run in the Pub2Pub Fun Run earlier that day. Nothing says "post activity hypo" quite like a 13km run along Sydney's Northern Beaches.

The kids before the start of the race.

Did I mention it was a soft-sand start!

(Screenshot of my Pub2Pub Run from Nike+ Running App)

Oh well, T1D may prevent me from getting any sleep, but I won't let it prevent the kids from achieving whatever it is that they want to achieve!

Wednesday, August 22, 2012

iBGStar Update!

Well, we have now been using the iBGStar for about a month and I am pleased to report that we are STILL loving it.

This means that it has passed the "novelty" test in my house!!!

As in - the novelty has NOT worn off!!!

BOTH of my kids have now given up their former meters in favour of their iBGStars.

Tim likes the fact that he no longer has to carry around a bulky meter. He's still hot a huge fan of using test strips instead of a cartridge, however, he feels that the rest of the benefits of the iBGStar - size, coolness factor etc, outweigh the nuisance of test strips.

As for his issue with the meter covering the headphone jack on the iPod Touch he has figured out that that's actually not a bad thing when using the iBGStar attached to his iPod at school. He cannot get into trouble for using his iPod at school (since it is now a "medical device") - and, he cannot be wrongfully accused of playing music on his iPod while at school (since they're not allowed to do that at his school) - because he actually cannot put the headphones in there while the iBGStar is connected.

So, Issie and Tim are the only two children at their school who are allowed to have their iPhone/iPod Touch with them at all times!

I like that they don't have to have the iBGStar meter attached to their iPhone/iPod when they're using it.

Most of the time when I'm doing overnight testing I can just use the meter on its own (the kids have passwords on their iPhone/iPod - so having to enter the password before testing if it's attached to the device can be a touch too difficult for the brain to cope with at 3am) - and I'll only plug it into their iPhone/iPod Touch if their BGL is out of range and I need to do a correction or make some other notes that I'm likely to forget by the time the rest of the world wakes up. So, on uneventful nights (although have to say, not too many of those in my house) I can just test on the iBGStar meter then get the kids to plug it into their iPhone/iPod before they go to school.

Another benefit of not having to have it connected to the iPhone/iPod Touch is that it is tiny enough to stick in the inside pocket of your ski jacket when you hit the slopes!

The kids and I attended the Riding On Insulin camp (check out their updated website - pretty cool) at Mt Baw Baw in Victoria about 10 days ago and the tiny size of the iBGStar meter made it very easy to keep it snug and warm inside their jacket pockets with no real issues of the meter getting cold and not working correctly.

Of course we demonstrated the iBGStar to lots of parents and kids at the camp, all of whom were VERY excited about this new meter with the general response, other than the initial, "coooooooool", being, "How do I get one???"

So look out Sanofi - I hope you've got enough stock coming in time for the official launch in Sydney next month!

Just one other thing I wanted to mention - the way you can customise your notes.

I LOVE this function.

Issie, however, thinks I've gone a bit nuts because the list of "regular" notes under each category is now almost as long as her arm (or, would be if it was not on an electronic device).

Let me explain my reason for having so many "regular" notes!

The sleep-deprived brain of a mother of 2 kids with T1D, who is working and studying politics and commercial law at Uni, is not very good at remembering details with respect to what was going on with either child's BGLs at any given time.

So, for me, the ability to be able to just tap on something that will keep a record of all the reasons for a BGL being through the roof or way too low, means that I now don't have to suffer through the inevitable questions from the Diabetes Educator come Clinic Day; "Well, why was her BGL so high/low at this time?", "Did he forget to bolus?", "Did she/he feel that hypo?" and the list goes on!

Now I don't have to remember ANY of those things - the iBGStar does this for me!!!

Here's a list of just SOME of the notes I have saved which can now be accessed just by touching the screen:
  • forgot to bolus for dinner
  • insulin pump correction
  • feeling lower than reading
  • feeling angry
  • carb free meal
  • temp basal increase
  • temp basal decrease
  • positive ketones
  • negative ketones
  • tried to steal best friend's fairy floss at the footy
  • had just met Hugh Jackman at the footy and was a teensy bit excited...

Okay - well maybe I just made up those last two - although we DID meet Hugh Jackman at the footy!!!

at Manly Sea Eagles v Newcastle Knights inaugural
19 August 2012

The iBGStar App is available through the App Store - here's a link for you so you don't have to search for it.

And here are some screenshots of some of the features on the iBGStar App - this App gives you sooooo much information, is really easy to use and really easy to customise!

Check out the BGL reading screen on the left (above) - you can add as many notes as you like,
well, at least so far I have not received any warnings that I've added too many notes,
 and believe me, I add LOTS of notes!

These charts are really cool - and, of course, they're interactive! If you move the line onto any of the dots it will then automatically take you to the BGL reading screen for that particular reading,
so you can easily see all the details and any notes you've made.

Oh - there is a way around the inability to be able to SMS single BGL results (say if the kids are at school and have a hypo or hyper and want you to know about it - which Issie so kindly did while I was in the middle of a lecture - which I then had to leave so that I could help her deal with a hypo that wouldn't budge) - just take a "screenshot" of the reading and attach that picture to your text message.

Oops - almost forgot this other thing...

Issie has told me that the readings on the iBGStar more closely reflect how she is feeling than any of her other meters have. I take this as a good thing because she is now more likely to trust a reading on this meter than she has on other meters.

All in all, we're loving the iBGStar, still.

My vacuum cleaner, however, probably isn't. It had become used to a life without test strips. Oh well, you can't please everyone!

Can't wait for the Official iBGStar Launch Party on 6 September in Sydney!

Wednesday, August 15, 2012

Riding On Insulin - Australia! A huge success!!!

Someone told me many years ago that a person is truly blessed if they have a friend in every corner of the world.

In that case, the kids and I are, most definitely, truly blessed.

On 7 August 2011 (a little over a year ago) I was invited to attend the JDRF Research Luncheon in Sydney at which JDRF International's President, Jeffrey Brewer, was to be the special guest.

While the luncheon itself was informative and very interesting, I had no idea that some of the people I met at that luncheon would become very important to me, and to my children.

I am, of course, referring to Sean and Mollie Busby and their Aussie friend, Peter Yates.

Following that meeting I stayed in contact with Mollie and Peter. Mollie has kept me updated about Riding On Insulin camps both in Australia and Canada, and Peter joined the Parents of Aussie Kids with Type 1 Diabetes Support Network and is a wealth of information.

If you're familiar with our own story you would know that the kids and I attended the first Canadian Riding On Insulin ski/snowboard camp in March 2012 at Nakiska, just outside of Calgary. We were, of course, the only Aussies at that camp.

At the conclusion of that camp Sean and Mollie asked Tim if he would be interested in being a Junior Coach/Mentor for the camp they were planning in Australia during our ski season. Of course he said that he would love to help out! Tim had also made a good friend in one of the ROI coaches, and best friend of Sean Busby, Alex Zipperer - and was thrilled that Alex would also be attending the camp in Australia.

During the planning of the camp, and in the weeks leading up to the trip to Mt Baw Baw in Victoria we hit a few bumps in the road which forced me to contact Mollie and let her know that, unfortunately, the kids and I would not be able to attend. However, Mollie was determined to make sure we could get there so that Tim could fulfil his role as a Junior Coach/Mentor, and, so that I could run the parent networking session while our kids were out skiing on the Saturday morning.

Because of the kindness, understanding and generosity of Mollie and Sean Busby we were able to attend the first ever Australian Riding On Insulin Camp from 10-12 August 2012 at Mt Baw Baw in Victoria!


ROI had a wonderful response from volunteers through Diabetes Australia Victoria and for many of the kids at this camp there was a ratio of 1:1 when it came to supervision and support! Many of the volunteers had had previous experience at DA Vic kids camps and there were also Diabetes Educators from various hospitals and clinics in Victoria.

Joining Tim as a Junior Coach/Mentor was Peter Yates' 13 year old daughter Milly - who is a champion snowboarder herself. Tim and Milly, and also Issie, became fast friends and it was so amazing to see these kids feeling so relaxed and comfortable in each other's company.

On the morning of Saturday 11 August, once the kids were all sorted out and had gone off with their coaches, I gathered the parents in our "base" and began the parent networking session. I started by inviting each and every parent to introduce themselves and tell everyone their "story" or anything they'd like to share about life as a parent of a child with T1D. Each parent told their story and then we spent a few hours covering many topics. We were so involved in discussions that we barely noticed that our kids were starting to dribble back in to get ready for lunch.

The kids and I stayed in a lodge with Mollie, Sean and Alex and all of the volunteers for the ROI camp. On both the Friday and Saturday nights, after the orientation and the banquet, we were joined by Peter and Milly at Frosti Lodge where we pulled all the tables together and talked and laughed and shared stories for hours.

The ROI camp not only gave the kids and I the opportunity to spend more time with Mollie, Sean and Alex and to get to know Peter and Milly - but also to make MANY new friends and reconnect with some families we have met along the way since our journey with T1D began in April 2010.

All of the kids hit it off right away and there was not a moment during the entire weekend when I saw anything other than huge smiles on the faces of our kids.

I was sooooooo incredibly proud of a few of the kids in particular, who had never skied or boarded before and were absolutely terrified at the start of the camp! Those kids know who they are - they are amazing! Despite their fears they just got out and did it!

Our weekend with Mollie, Sean, Alex, Peter, Milly and all of the other participants and volunteers at the first ever Australian Riding On Insulin Camp at Mt Baw Baw most certainly showed me that the kids and I are truly blessed.

Mollie and Sean, we just can't thank you enough. Our door will always be open to you and Alex whenever you are in our neck of the woods and you will always remain in our hearts.

I would also like to say a huge THANK YOU to my lovely friend and fellow T1D Mum, Meg, her husband Dave and gorgeous T1D daughter Gemma who opened their home to us to break up the long trip from Sydney to Mt Baw Baw. If there is one wonderful thing about T1D it is that it brings people together. For the most part the people I have met through T1D are not just friends, they are family.