Flu season already ?

Canada Day face painting.

I'm not sure if it's because summer simply decided to not come to our part of the world this year, but it seems like we've fast-forwarded directly into flu season. Playing the Type 1 game is always alot of work, most pleasant when the body cooperates and very difficult when it doesn't. Without warning Adele woke up with the flu and a fever on Saturday morning. Since it started very quickly, my thinking was that it would also end very quickly. It must be something she picked up at daycare. After all, that's what kids do right... they carry and transmit viruses all the while building up their immune system. Being successful while playing the Type 1 game depends on consistency and predictibility. For a Type 1 gamer a simple flu is often the equivalent of someone shoving a crowbar into your bicycle spokes when you're flying down a hill... It ain't good.

Adele's sugars didn't seem to be affected a lot when the symptoms started. Her sugars had a tendancy to go up (they usually do when a Type 1 diabetic gets sick), but I was still managing to keep them in check with the occasional correction. Sunday afternoon this all changed. All of the scales that I had been using to calculate insulin doses were no longer enough. It was the equivalent of putting in countless hours on a project and losing ALL your work in a matter of minutes. I had absolutely no idea how much insulin she now needed to avoid these highs. Her appetite was not good. She had diarrhea and naussea. Because of the high sugars, she also had ketones in her bloodstream. If this is not dealt with it can progress to a serious complication called diabetic ketoacidosis (DKA) which can lead to coma or death if not treated. Obviously we'd be heading to the hospital well before then, but I just mentioned that to show the seriousness of DKA.

Here are some highlights from the past few days...

Saturday, July 4th

9:45 pm -> 8.7
10:23 pm -> 17.4 (way too high and climbing way too fast, gave 1.3 units insulin)
11:30 pm -> 14.0 (still too high, but at least going down, gave another 0.1 units insulin)

Sunday, July 5th

4:55 am -> 21.3 (alarm clock did not wake us at 1 am as planned, I woke up by myself and had a feeling she was high, I was correct, ketones -> 1.3, unlike sugar ketones should be zero, gave 1.0 units insulin)
6:00 am -> 20.2 (still way too high, gave another 0.5 units insulin)
8:00 am -> 10.5 (better, but still too high before breakfast)
10:00 am -> 10.6 (still highish)
11:34 am -> 9.8 (still highish before lunch)
2:25 pm -> 15.5 (way too high before snack, gave 1.4 units insulin to cover snack and hopefully correct this high)
3:30 pm -> 22.8 (way too high, the scales are no longer working, gave 1.7 units insulin)
4:50 pm -> 14.5 (going down, but still too high, gave another 0.5 units insulin)
5:45 pm -> 12.4 (still too high before supper)
7:10 pm -> 17.3 (way too high, gave another 1.0 units insulin)
9:40 pm -> 13.8 (still too high, gave 1.0 units insulin)
11:00 pm -> 20.3 (still way too high, ketones -> 0.8, gave another 1.8 units insulin)

Monday, July 6th

12:15 am -> 14.7 (at least it's going down now)
1:30 am -> 7.8 (going down too fast?, turned pump off for 1 hour to try to avoid low)
2:00 am -> 7.4 (low avoided)
3:05 am -> 5.8 (gave her 3 gummies to avoid low)
5:00 am -> 10.9
6:55 am -> 19.1 (way too high, here we go again, gave 1.2 units insulin, Adele was nauseous, no breakfast)
8:05 am -> 13.1 (still high, gave another 0.6 units insulin)
9:05 am -> 8.3 (finally a good number)
10:15 am -> 12.5 (going up again, gave 0.3 units insulin)
11:25 am -> 11.2
1:30 pm -> 16.8 (too high, insulin scales are still not enough, gave 1.3 units insulin)
2:45 pm -> 9.3 (going down)
4:00 pm -> 5.2 (turned pump off for half an hour to avoid low)
5:00 pm -> 6.1 (low avoided, good number before supper)
7:10 pm -> 15.0 (too high again, corrected with 0.9 units of insulin)

The purpose of this post (and entire blog) is not to get anyone's pity, it's simply to explain what we go through dealing with a seamingly simple flu virus. Keep this in mind the next time you encounter someone else playing the Type 1 game who seems tired. It's an earned fatigue.

Why so many blood glucose tests last night?
1 - I was giving insulin boluses blindly. What I mean by this is that I had absolutely no idea how much insulin Adele's body needed and how it was going to react. A few days ago, all this insulin would have surely put her in a diabetic coma or killed her and I couldn't help but be nervous giving her so much insulin and then trying to sleep. Testing often is necessary during times like these.
2 - I really, really wanted to try to avoid DKA which means a hospital stay.

As I'm writing this she seems to be getting better. She's eating a bit and her sugars are floating around 8 - 9 right now with the additional insulin that I've been giving.
Thanks for reading...

Adele's toe part deux

Happy Canada Day !

We're looking forward to the day off work tomorrow to be able to celebrate living in the best country in the world. There's no vacation from the Type 1 game though. 24/7, 365 days a year. It's a crazy game that we're expected to play with no breaks whatsoever. What other choice do we have?

Adele is still on the Continuous Glucose Monitor (CGM). Sensors have been lasting 5 to 6 days lately. Monday nights have been sensor insertion night for the past few weeks. We need a full night in order to freeze the skin, insert the sensor and calibrate. Hopefully it will get better, but right now it's basically a full night.

Last night we inserted a new sensor (and an infusion site insertion and a new insulin reservoir in her pump). The last one had lasted until Sunday afternoon so we had been doing finger pokes since then. The insertion itself was the best so far. Adele was all excited saying that it didn't hurt her at all. I had cut a small dressing to keep things in place while still allowing breathing room for her skin. Adele finds that it itches a whole lot after a few days (not so good when we're trying to keep it on for 6). After that was when the problems started. The pump kept giving us BAD SENSOR errors. After about 2 hours of restarting the sensor and still getting errors, Adele started to cry. She loves the sensor, but was afraid that we had gone through the whole insertion for nothing. I ended up calling the Medtronic helpdesk. The Medtronic support lady stepped me through what I needed to do and we finally got the sensor to start reading glucose levels. Adele went to bed at that point as it was 9 pm. I calibrated around 11 pm and went to bed. The pump alarm woke me up at midnight with a Calibration error alarm. We got up at 2 pm and did a finger poke since the CGM was still not working. This morning I tried again and got it to work. It started reading just before we left the house. I'm glad we didn't remove the sensor and kept trying. Adele was very, very happy when she glanced down at her pump and saw her sugar. I was very happy as well. The pump asked for a calibration in the early afternoon (as expected) and I managed to step Adele's caregiver at daycare through the calibration process.

Now back to Adele's toe (ingrown toenail). It was better following the oral antibiotics, but seemed to have gotten worse a few days after finishing the antibiotics. Adele complains that it hurts and her sugars had crept up as well. Here are the game highlights for the past 2 days...

Monday, June 29th

1:50 am -> 18.4 (way too high, gave 0.6 units insulin)
7:15 am -> 9.8 (a bit too high before breakfast)
8:45 am -> 11.6 (too high before am snack, ate and bolused with 0.8 units insulin)
10:15 am -> 4.2 (dropping very fast, gave 17g carbs to avoid low)
11:15 am -> 4.6 (low avoided before lunch)
2:00 pm -> 7.9
3:10 pm -> 10.0 (a bit high before pm snack)
4:10 pm -> 21.1 (way too high, not sure why it shot up like that, gave 0.9 units insulin)
5:00 pm -> 21.o (still way too high, corrected aggressively before supper, 2.6 units insulin)
7:00 pm -> 7.9 (finally coming down, but will it come down too much?, ate evening snack, bolused with 0.8 units insulin)
8:35 pm -> 18.0 (apparently it won't come down too much, gave 0.7 units insulin)
9:30 pm -> 20.0 (still not coming down, gave another 0.7 units insulin)
11:00 pm -> 9.8 (now it's coming down, but I hope that it won't drop too much, shut off pump for 1 hour)

Tuesday, June 30th

2:00 am -> 8.9 (good for night, didn't do anything. Thanks Type 1 gods, we can sleep!)
7:15 am -> 10.2 (too high before breakfast, ate and bolused with 1.9 units insulin)
8:45 am -> 14.3 (too high before am snack, ate and gave 0.6 units insulin)
10:15 am -> 12.8 (still too high, gave 0.2 units insulin)
11:15 am -> 10.3 (too high before lunch, ate 2.1 units insulin)
1:00 pm -> 10.2
3:15 pm -> 7.4 (very good before pm snack)
5:00 pm -> 9.1 (a bit high before supper, ate and bolused with 2.4 units insulin)

The high sugars on Monday night may have been the cause for the difficulties encountered setting up the CGM sensor. Today's sugars are better than yesterday. Maybe her toe is getting better? We'll see...

JDRF Annual General Meeting

Picture of my feet standing on the glass floor of the CN tower. It still freaks me out just looking at the picture...

This past weekend, I attended the JDRF AGM in Toronto. It was amazing! 100 to 150 people dedicated to find a cure for Type 1 Diabetes together made for a very strong and positive vibe. I found it very inspiring to be amongst such a group of amazing people who have stepped up to the plate to help accelerate the cure for Type 1 Diabetes instead of feeling sorry for themselves. Interacting with others who truly "get" what it is to live with Type 1 was very good for the morale and provided me with lots of hope for Adele's future. And it has motivated me to continue to fundraise. This Type 1 thing is not going to go away by itself, it's up to each and every one of us to help make it happen...

It was very exciting to hear about the artificial pancreas project at one of the AGM presentations. This is a closed loop system in which an algorythm automatically makes insulin delivery adjustments based on continuous glucose monitoring readings. If the algorythm predicts that blood glucose is rising or will rise, then it reacts by delivering more insulin. If the algorythm predicts that blood glucose is dropping or will drop, then it reacts by delivering less insulin (or even none at all). This is still a few years away, but very exciting nonetheless. We also heard about glucose-responsive insulin which is only active in presence of glucose, a drug that seems to halt the destruction of insulin producing islets in early onset Type 1 Diabetes, a drug that seems to protect the eyes from the devastating effect of long-term diabetes as well as trying to find way to stimulate the body to regerate new insulin-producting islets. These are all very exciting research projects that show that funds raised for JDRF really are leading to discoveries that help all playing the Type 1 game achieve better control.

As far as our day-to-day gaming, Adele's toe is better. The infection is gone. But even as her toe was healing, her sugars kept creeping up. Technically this should have been the opposite. On Thursday we found out what was causing this rise. She woke up with a cold (sore throat, fever and cough). Yep, that'll wreak havoc on sugars ! Even if Adele's cold symptoms have gotten better, her sugars still seem to want to creep up. I've managed to somewhat keep things under control by modifying insulin scales throughout the day which translates into more insulin. Today was a good day. Here are the details...

1:00 am -> 13.2 (too high, gave 0.6 units insulin to bring down)

7:10 am -> 3.8 (too low, I guess the 0.6 units of insulin last night may have been too much, also decreased morning insulin basal rate from 0.55 units per hour to 0.5 units)

7:55 am -> 6.7 with one arrow up (gave 0.3 units to avoid future high)

8:45 am -> 5.8 (very good before am snack, she ate 14 grams carbs, gave 0.1 units insulin)

10:15 am -> 7.0 with one arrow up (0.1 units after snack was not enough, gave 0.4 units insulin to avoid subsequent high)

11:15 am -> 7.2 (very good before lunch, she ate 51.1 grams of carbs, bolused 1.9 units insulin)

1:15 pm -> 8.4 (did nothing)

2:15 pm -> 7.9 (gave 9 grams of carbs, still 1 hour before afternoon snack)

3:15 pm -> 6.9 with one arrow up (i guess the 9 grams one hour ago wasn't necessary, ate afternoon snack, bolused with 1.1 units insulin)

5:00 pm -> 4.1 (pump gave low alarm since sugar was below 4.5, gave her a Dex4 at daycare to avoid low before arriving home, supper and 2.6 units insulin)

7:00 pm -> 6.3 (very good before bedtime snack, ate 62.4 grams carbs, gave 2.2 units insulin)

9:00 pm -> 7.9 (looking at graph her sugar was dropping and snack bolus was about to peak, shut off her pump for 1 hour to avoid low)

10:00 pm -> 7.7 (low avoided)

10:30 pm -> 8.3 (rising slowly, hopefully not too much, 9.0 is our target at bedtime)

All these numbers are from the Continuous Glucose Monitor (CGM). After 2 days of finger pricks, we inserted a new sensor last night. The CGM indicates rapid blood glucose fluctuations by either one or two arrows either up or down. These helped me today to keep things in check. We'll see if Adele's body keeps cooperating. I predict that I will need to back things off later this week as she really gets rid of her cold... We'll see.

The power of a toe

First and foremost, I would like to personally thank everyone who organized, participated and fundraised in last weekend's Telus Walk to Cure Type 1 Diabetes. It really, really means alot to me and my family. The final number for the Moncton Walk was a total over $220,000 ! Again THANK YOU !

Next up, the Mike's Bike Shop Cyclebetes 200km bike ride to Cure Type 1 Diabetes on September 12th, 2009. I can't wait !

As far as Type 1 gaming, we're currently on day 3 of Adele's 5th Continuous Glucose Monitoring (CGM) sensor. The insertion is getting better and better. Adele didn't even cry this time! She is one brave little girl. No errors so far either. I wouldn't really say we're on a winning streak at the moment, but we're starting to get better and better at the CGMing aspect. Adele really appreciates the freedom from the finger pricks that it gives her when the system is well calibrated and working like it should and we really enjoy the low glucose alarms. It's too bad that more Type 1 gamers can't afford the CGM tools...

As of last weekend, Adele's blood sugars have started to creep up. She wasn't sick, less active, eating more or less at different times of the day. What was causing this sudden rise? Sometimes it can't be explained. As I have mentioned before, the body is a very complex system. Any little thing that would go unnoticed by a non-diabetic will show itself as blood glucose fluctuations in someone playing the Type 1 game. For Adele, this little thing turned out to be an ingrown toenail that started to become infected. It wasn't enough to stop her from doing all of her everyday activities, but it sure wreaked havoc on her sugars. Here are some highlights from Monday...

Monday, June 8th, 2009

12:45 am -> 16.2 (too high, gave 0.6 units insulin)
5:05 am -> 19.9 (way too high, gave another 0.9 units insulin)
7:10 am -> 12.1 (too high before breakfast, corrected before her breakfast)
8:30 am -> 13.1 (still high before gym class at school)
9:30 am -> 10.5 (still high after gym class, I guess she didn't run enough, corrected before snack)
10:50 am -> 10.1 (not going down enough, gave another 0.3 units insulin)
11:50 am -> 11.9 (still high, corrected again before lunch)
1:30 pm -> 12.7 (still high, gave 0.1 units insulin)
2:45 pm -> 13.6 (going up again, gave 0.4 units insulin before she got on the bus)
3:50 pm -> 14.8 (seems like it just won't come down)
5:30 pm -> 17.7 (way too high, corrected before supper)
7:40 pm -> 20.8 (even higher now, corrected really aggressively and changed her infusion site - catheter under the skin that delivers insulin just in case the old one wasn't working)
8:40 pm -> 20.4 (not going down, gave 0.4 units insulin before she went to bed)
9:30 pm -> 17.0 (at least it's going down now)
10:50 pm -> 14.9 (still too high, gave another 0.3 units insulin)


A full day of high sugars due to a toenail!! Things seem to have settled down a bit now since I have made many changes in her insulin scales. Insulin amounts that would surely have given her a serious insulin reaction a few days ago are just enough from keeping her from going high now. I need to be careful though because this is going to switch back at one point and I'll surely need to back things off as her toe gets better. When will this be? I have no idea, but I do know that it will eventually happen. We'll see what the Type 1 game has in store in the upcoming days...

Keep on trying...

As I started to write this post, we were starting day 5 on our 4th CGM sensor. We were going to try to keep this one going for 6 days. I have spoken to a few people and they have been successfully keeping their sensors on for 6 days without problems. The 3rd sensor only lasted 4 days. Last Saturday, after swimming, I reconnected Adele's pump (she can't wear it in the water). Once the pump started reading the sensor glucose values it began to beep. The alarm indicated that Adele was low. It said her sugar was 2.9. I asked Adele if she felt low, she said no, but then maybe. I checked with a finger poke / meter and she was 17.4 !! Major difference. The blood glucose level (finger poke) is always more precise than the value in the interstitial fluid (CGM sensor), so the 17.4 was the right answer (but not a good blood glucose value - way too high). I'm glad that I didn't treat the 2.9 with more sugar, it would have made matters much worse. I tried recalibrating after this for about 3 hours and kept getting BAD SENSOR errors, so we decided to remove the sensor and go back to the old school method of finger pricks. I was away Saturday night until Sunday around 8pm, so we didn't have time to insert a new sensor before the beginning of the week.

On Monday night, both me and Michele were home, so it was time for a new sensor. Adele was very anxious of the insersion needle, but understood that it was worth it since she wouldn't need to be finger poked the next day during her school field trip as well as the rest of the week. After another very tense moment just before the needle insertion, Adele said it wasn't so bad this time around. She said it only hurt a bit after it was inserted, then it was OK. We were quite happy with this progress. The pump began reading the sensor signal and I thought we were in business, but after about an hour, the pump could no longer read the sensor signal. We were getting alarm errors. I tried restarting the sensor, but it didn't work. This was just before Adele's bedtime and she was getting tired. She began to cry thinking that we had done the whole insertion for nothing. My last resort was removing the dressing that was covering the sensor. This is tricky business, since you only must remove the dressing (clear, transparent, very thin sticker that keeps the sensor in place) and not the sensor itself. After removing part of the dressing, I gently pushed the transmitter towards the sensor to make sure they were connected properly and it fixed the problem. The dressing was on too tight and it had pulled the transmitter away from the sensor and caused it to not work.

Finishing writing this post after Adele's swimming this morning, her sensor got messed up again. I could not recalibrate and was constantly getting Calibration Errors. It was the end of this sensor. That's the 2nd one that got ruined after swimming. We got 4 1/2 days out of this sensor and are back to finger pricks.

Adele's sugars have been high all afternoon. I have been double correcting and still couldn't bring them down. Here are the highlights:

12:00 pm -> 16.4 (this was right after swimming, gave 1.0 units of insulin)

12:45 pm -> 16.3 (still too high, corrected again, ate and gave more insulin to cover lunch, 2.1 units of insulin total)

2:40 pm -> 16.1 (still too high, gave another 0.7 units of insulin, no food)

3:40 pm -> 17.1 (still going up even after all that insulin, gave another 0.8 units)

5:35 pm -> 16.5 (still too high, it just won't go down, changed her infusion set, corrected, ate and gave more insulin to cover supper, 1.9 units of insulin total)

7:00 pm -> 7.4 (finally Adele's sugar has started to come down, maybe it was the old infusion site that wasn't working properly?)

We're still not giving up on the Continuous Glucose Monitoring. We're not risking inserting a new sensor tonight since Adele is swimming again tomorrow morning. Maybe tomorrow night or Monday? I need to keep searching for something better for Adele. Improvements will not happen by never trying new things and taking risks. She really likes her CGM when it is working as it should.

Looking forward to the Telus Walk to Cure Type 1 Diabetes tomorrow!

Thanks for reading...

CGMing part 2...

I think that one of the worse thing that a parent goes through is seeing their child suffer. Last night Adele was terrified of the long, thick needle that was going to be injected into her abdomen in order to insert her Continuous Glucose Monitoring sensor. Even with the Emla anesthetic cream, she is still terrified of the needle insertion, crying and holding onto her mother with all her might. As the person holding the needle, just about to push the release button, I felt like I was just about to stab my own daughter. I saw the fear in her eyes while she was trying so hard to be brave. Every single cell in my body was hating playing the Type 1 game so much at that very moment. I felt nauseous. There are good days and bad days while gaming. This was a very bad day.

What made it that much more difficult was that technically the Continuous Glucose Monitoring was not necessary to manage Adele's diabetes and keep her alive. We were getting the job done with finger pricks. The thing is that in order to have good glucose control while playing the Type 1 game, you need to know where the blood sugar is going. Simply knowing where it is right now is not enough. A low or high needs to be prevented before it happens instead of simply treated when it occurs. And to get a sense of where the sugar is going (either up or down) you need to test often. We got our best A1C (3 month average blood glucose level) this month, but needed 15 or more finger pokes per day to achieve this. And even with all these needles, her A1C is still not as good as a non-diabetic.

So, what do we do? I have made a promise to myself to do every single thing in my power to help find a cure for Adele's chronic disease sooner than later and to give her the best possible care in the meantime. It's my gift to her as a child until she takes full responsibility of playing the Type 1 game. Today, an insulin pump with Continuous Glucose Monitoring is the best tool available to help keep her blood sugar as close to normal as possible. It's the treatment that is closest to a healthy pancreas while helping avoiding lows and highs. Am I fullfilling my promise or am I being selfish in "forcing" this on Adele for my own piece of mind? Once the sensor is in and calibrated, it is an amazing tool that gives us much more piece of mind than finger pokes alone.

So, after the sensor insertion, lots of crying and consoling, an infusion site change (separate catheter inserted under the skin for insulin delivery), CGM calibration and a high blood sugar (17.7), I went to bed exhausted and confused...

And so many people think that all there is to Type 1 diabetes is simply avoiding sweets...

Type 1 CGMing

We've got 1 week in with Adele's new pump and Continuous Glucose Monitor (CGM). We are very fortunate to have an insurance plan that enables us to use this new Type 1 game technology as it is very, very expensive. The new pump with the CGM transmitter and 4 CGM sensors cost over $7000. It's sad, but success while playing the Type 1 game is very dependant on the size of your wallet (or your insurance plan). Not all players can afford the same level of care. Very sad for the genetically disadvantaged but true...

After a full week using the new system, here are my impressions:

The good - you can set low and high blood sugar alarms, it saves Adele's fingers from most of the finger pricks that she gets when not on the CGM, it is very practical while we're out and about - you don't need to stop and test, you simply quickly glance at the pump and can see her blood sugar at that moment as well as a graph showing the trend in the last 3 hours (or 24 hours). The pic above was upon waking this morning. CGM said 6.9 and fairly steady for the last 3 hours which means basals are good. The blood glucose meter (finger prick) said 6.1 - pretty close.

The not so good - the sensor needs to be changed every 3 to 5 days (at $50 a sensor), the transmittor needs to be recharged (took about 15-20 minutes after 5 days of use), once the new sensor is inserted there is an initialization period of about 2 hours after which you need to calibrate (test blood sugar using the meter and a finger prick then enter the value in the pump) and then recalibrate within another 6 hours - you need a good 4 - 5 hour period following a sensor change to be good to go which means immediately after supper during the week or on the weekend, recalibration is also necessary every 12 hours or less after initial calibration, if sensor is not inserted properly - many errors and pump alarms, sensor readings are not as precise as blood glucose readings using the meter and a finger prick (can be up to 20 % off - or more in my experience if the blood sugar is changing rapidly), Adele is terrified (and cried lots) when inserting the sensor (even with the Emla cream that supposedly numbs the skin).

So, even if my "not so good list" is longer than my "good" list, we're going to continue using the system. We may go off it from time to time in cases when we just don't have the 4 - 5 hours to change and calibrate the sensor or if we're getting recurrent error alarms during the day. After playing the Type 1 game for over 6 years now, it is an amazing, unexplainable feeling to simply be able to look at Adele's pump to see where her sugar is at and where it's going. It gives us an added sense of security. Already, she's had less lows this past week since on the CGM system. Another drawback is having 2 insertion sites on her body - 1 catheter for insulin delivery and the sensor to read glucose values (no they're not integrated together - the catheter needs to be changed every 3 days, the sensor can stay longer - up to 5 days).

How does Adele feel about the system? Like I mentioned before, she is terrified on the sensor insertion. It's done using a spring loaded pen-like device and the needle is thicker than the infusion site catheter that she is used to. Hopefully this will get better. She says it hurts more than the other infusion site (it needs to go deeper), but still understands that it saves her finger pricks in the long run. She's quite the trooper and my hero... I'm not sure I could handle all those needles and pokes as well as she does. She's an amazing Type 1 player !

TEAM ADELE will again be walking in the Telus Walk to Cure Type 1 Diabetes on June 7th. You can pledge our team here (100% tax deductible):

http://jdrfca.donordrive.com/index.cfm?fuseaction=donorDrive.participant&eventID=633&participantID=4826

Thank you

Beyond the surface

One of the things that makes Type 1 Diabetes awareness difficult for non-players is that most Type 1 diabetics appear to be healthy. Adele goes to school, plays, runs, swims and bikes just like other "normal" kids her age. She doesn't have any visible physical characteristics that indicate that she has a chronic illness (well except for her pump and "mangled" fingertips). She acts normally most of the time (unless her sugar is low, but she can bounce back from this in a matter of minutes), she's not in a wheelchair or physically crippled in any way. And the biggest Type 1 misconception - yes, she CAN eat sweets like everyone else on occasion. She can't feel high blood sugars or sudden drops. All of the Type 1 turmoil is going on inside of her body, silently... That's what people not affected by Type 1 Diabetes need to know. Type 1 Diabetes is a silent, chronic, complex and serious disease that requires alot of very hard work... and without any guarantees whatsoever for a future without complications.

As far as our gaming this past week, Adele's sugars have been all over the place the last few days. Either way up, then crashing down... Scales that had been working aren't any more. Sleep has been in shorts intervals. I'm currently making changes to hopefully make things settle down. That's what the game cycle is all about for us...

Friday, May 8th, Adele's wake up sugar was 16.6 (way too high) and at 11:00 pm she was 3.1 (way too low). She fluctuated between these 2 values the rest of the day.

Saturday, May 19th, the low point was 2.4 (way too low) at 3:45 in the afternoon and the high point was 22.7 (way too high) at 10:00 pm. A high blood sugar like this before bed means some good "sleep-deprivation" training !

Sunday, May 10th, she dropped to 3.6 (too low) at 9:55 am and shot up to 16.4 (way too high) at 10:50 pm. Another night of short but frequent sleep intervals...

Monday, May 11th, woke up at 15.4 (way too high) and went low in the school bus after class (3.6 - too low, especially while unsupervised in the bus!).

Tuesday, May 12th, no lows today - changes that I have been making seem to be helping so far. Adele's sugar did shoot up to 15.3 at 8:30 pm just before she went to bed though.

Adele should be switching over to her new pump with the Continuous Glucose Monitoring at the end of this week. Details will appear in upcoming posts...

I don't want to play anymore...

After a real good week, Adele has started to become more and more sensitive to insulin. Yesterday, she had really good blood glucose values, but needed to eat extra carbs in between meals / snacks to avoid going low. I hate force-feeding her like this.

Because of this increased insulin sensitivity, I backed off Adele's insulin a bit today to avoid the extra snacks required yesterday. This seemed to be working very good until around supper. Her sugar was 3.7 before supper (anything below 4.0 is considered low). I need to back off her insulin even more at her afternoon snack tomorrow and it should fix it. As I was eating a late supper around 7 pm, Adele started eating from my plate with her bare hands. I told her that it wasn't snack time yet, that she needed to go take a shower and would eat afterwards... unless she felt low. She said she didn't feel low but was just very, very hungry. Again she started eating from my plate. She was acting like a starving homeless person who was so hungry that all that mattered was to eat. Table etiquette and manners were not considered since survival was the only thing of importance in this state. This is not like Adele. She then tells us that she feels dizzy and weak, so we test her right away... 1.8 !!!

This is very, very low. We give her juice right away, Dex 4 glucose tablets, Crispy Mini rice chips, a banana. Her brain in it's glucose-deprived state was telling her that she needed to eat... right now in order to stay alive. She started shaking and had a hard time sitting down, every cell in her body was struggling to keep functioning and maintain life. So after about 45 grams of carbs, 15 minutes later her sugar had gone up to 4.4. Now, at least she's out of danger. She's still hungry. The glucose level in the blood had gone up, but the cells still didn't get enough sugar yet. After her snack, my math gives me close to 100 grams (mostly fruit and low-sugar cereal for the remaining 65 grams). Now I need to bolus (give more insulin) for part of these carbs. If not, she will surely go high. But how much insulin do I give? I no longer have confidence in the scales that I've been using after this very low blood sugar. I hope my guesstimate is good... I want to sleep tonight.

I don't want to play the Type 1 game anymore... Unfortunately that isn't an option right now.

Mourning

Even 6 and 1/2 years after Adele's Type 1 diagnosis, I think I am still going through a certain mourning process. The chronic aspect of Type 1 Diabetes hits me sometimes. I have fond memories of my youth, coming and going as I pleased, litterally riding my bike from sunset to sundown, not a care in the world. It makes me sad to think that Type 1 has robbed this from Adele. I even feel guilty when I get up and just go out for a bike ride. With Type 1 Diabetes you can't do that. Everything has to be carefully planned. It's just part of the game, always on your mind, always trying to think ahead to try to avoid highs and lows.

Today Adele and I had the opportunity to speak at the UPS JDRF Telus Walk to Cure Diabetes fundraiser kickoff. Adele was quite shy in front of the big crowd and didn't want to speak. Mr. Norm Robichaud's speech was quite moving. If that didn't encourage UPS staff to step up to the challenge and participate, nothing will in my opinion. Excellent job Mr. Robichaud and THANK YOU once again UPS for choosing JDRF as your charity.

We have an apointment with the Medtronic rep Thursday, May 14th for our pump training. It is really more training on the Continuous Glucose Monitoring aspect of the pump system, but she will also show us various functions that the new pump does above and beyond what are current pump can do. We're quite excited!

We had a good Type 1 game day today. Actually, the entire week was pretty good really. Like I had already mentioned, it's not because we're doing a better job than on the not so good days, it's just that Adele's body seems to be cooperating. I have been having a few problems with her breakfast though. This week she started eating 2 toasts instead of the usual 1. I totally agree with the 2 toasts, since 1 small toast seems like hardly enough to keep her going and ready to learn at school. The problem with the second toast is that it is causing her sugar to go up 1 to 2 hours after she eats. But then the sugar crashes during the 3rd hour. If I give more insulin after breakfast to avoid the rise in blood sugar, she will likely crash lower during the 3rd hour which is not good. Less insulin will cause the blood sugar to rise even more, which is also not good. I tried giving her more insulin via her basal before she wakes up to try and give her an insulin head start before her breakfast, but she was waking up in the 4's - good numbers, but also a bit too low which may get even lower if she suddenly becomes more sensitive to insulin (this occurs very often) or if she decides to sleep in (like on the weekend). Not sure how or if I can fix this? Adding protein to the breakfast menu would likely help, but we're dealing with a typical 8 year old who is a picky eater. She likes bacon, but I'm not too crazy about feeding her bacon every morning...

Here are a few game highlights from this week:

Monday, April 27th, 2009

7:05 am = 8.9 (highish, but still pretty good before breakfast - 2 gluten-free toasts w. Nutella and milk)

8:30 am = 13.3 (high)

9:20 am = 4.2 (she ate 15g carbs, no insulin to try to avoid low)

9:50 am = 3.9 (still went low before her morning snack)

Tuesday, April 28th, 2009

7:00 am = 4.6 (very good before breakfast - 2 gluten-free toasts w. Nutella and milk)

8:50 am = 10.6 (still too high)

9:50 am = 5.0 (before her morning snack, she ate 12g carbs, no insulin)

10:50 am = 4.9

Wednesday, April 29th, 2009

6:50 am = 5.9 (very good before breakfast - 2 gluten-free toasts w. Nutella and milk)

8:45 am = 11.2 (still too high)

9:55 am = 4.6 (before her morning snack, 17g carbs, no insulin)

10:50 am = 5.5

We'll see what the next few days bring... Thanks for reading

When life messes with your game plan...

I've made a few basal insulin adjustments the last few nights that seem to be working pretty good. Last night, as we were getting ready to go to the Dieppe Volunteer appreciation ceremony at Mathieu-Martin, Adele tells us that she feels low. This is less than 1 hour after supper, so a low so soon after a meal is quite unlikely. We test and yes she's low. Her sugar is 2.7. Not sure where that came from? So the rush to get ready for the Volunteer ceremony suddenly changed to a rush to give Adele some much needed sugar. How dare life (going to a Volunteer appreciation ceremony) make us lose our Type 1 game focus! We forced her to drink a juice and eat some crackers. Low blood glucose means sugar starved brain cells which means a very unreasonable 8 year old. "I don't like that kind of juice!" is Adele's reply, while we're fumbling to get her to eat / drink anything at all to litterally save her life. The rest of the day was quite good, but like always the 2.7 after supper is just Type 1's way of reminding us that it's always there just waiting for a chance to bite.

Here are yesterday's game highlights:

Thursday, April 23rd, 2009

1:20 am = 9.1 (good, we aim for a bit higher sugars during the night to give a buffer in case she drops while everyone sleeps)
6:50 am = 9.9 (a bit high, corrected before breakfast)
8:55 am = 10.3 (still highish, gave another 0.2 units of insulin)
9:50 am = 4.3 (awesome value before am snack)
10:50 am = 6.9 (very good)
11:45 am = 7.3 (also very good before lunch)
1:30 pm = 11.2 (highish, but didn't give any insulin - lunch insulin bolus still active, will wait until 2:45)
2:45 pm = 10.1 (going down slowly, I didn't correct before Adele got on the school bus to go to daycare)
3:10 pm = 5.9 (very good before pm snack)
5:00 pm = 6.4 (very good before supper)
6:25 pm = 2.7 (where did this low come from? gave her 20 grams fast acting carbs, supper insulin bolus is still very active)
6:40 pm = 4.6 (out of danger, going up but maybe not enough, gave her a Dex 4 glucose tablet)
7:30 pm = 9.6 (going up too fast?, gave her 0.3 units of insulin to prevent a subsequent high)
8:50 pm = 8.1
9:50 pm = 6.2 (going down too much?, turned off her pump for 30 minutes hoping to create a slight upward trend)
10:40 pm = 7.5 (looking good)
11:05 pm = 9.3 (going up too fast now, guesstimated that 0.35 units of insulin will reverse this, gave her the insulin and went to bed)

Friday, April 24th, 2009

1:10 am = 8.9 (very good for nighttime, no intervention needed, thank you Type 1 gods - we can go back to sleep!)
7:15 am = 7.8 (good before breakfast)

Next Thursday, April 30th, Adele and I are looking forward to attending the UPS JDRF fundraiser kickoff event. Have a good weekend everyone !

Thank you UPS

I had the pleasure of speaking with 2 small groups of employees at UPS here in Moncton today during my lunch hour. The purpose of the presentation was to give a personal perspective of what Type 1 is in conjunction with the JDRF Walk to Cure Type 1 Diabetes on June 7th. Thank you very much UPS for choosing JDRF as your charity of choice and thank you to each individual UPS employee who chooses to fundraise and participate in the walk. Your support is truly appreciated. Such initiatives will enable research to continue and bring us to a cure sooner. Like I said in a previous entry, we have huge plans for that day... I can already picture it in my mind, smell it, taste it and feel it. We're that close... For us, it will be the ultimate dream come true! I can't wait...

Adele's new insulin pump arrived early this week. There is nothing wrong with her old one, but the warranty ran out and our insurance company was willing to pay for a new one. Total price was $7200. Ouch! Thank god for our insurance! I have alot of reading up to do to fully understand all the functionality of the new system. The new pump came with a software package, wireless download capacity from pump to PC and also has Continuous Glucose Monitoring. A sensor inserted under the skin reads blood glucose every few minutes and the wireless transmitter sends this data to pump wirelessly. The pump displays a graph of the blood sugar for the past few hours. The pump does not automatically adjust insulin doses based on blood sugar though. A human intervention is still necessary to manage it all. How is this going to help us play the Type 1 game? It will save Adele finger pokes to check her blood sugar. It will also make it alot easier to check her sugar in public places or during various daily activities. We will also be able to set alarms that will go off if her sugar goes low or too high. We're quite excited! More posts will follow as we move forward with the new system... Stay tuned.

Adele's sugars have been on the good to highish side this week. Her sugars have started to shoot up during the night again though the last few days. Adjustments are necessary I think. I hate making changes in the night insulin doses because it means more testing and uneasy sleep since I am always quite unsure of how things are going to go the first few days after a dosage change. Monday night (Tuesday morning) her sugar went up to 17.3 @ 2:00 am. Last night (this morning) her sugar went up to 18.4 @ 1:15 am. I obviously needed to give her insulin to try and correct both times. 0.65 units of insulin last night brought her down to 9.6 before breakfast (still a bit high). After floating between 10 and 14 all afternoon (this is too high) and finding some blood in her infusion site (catheter that delivers insulin), we decided to change the infusion site even if it was only there for 2 days. The new infusion site brought her sugar down to 7.6 before her bedtime snack, so I think it was a good decision. I'm still not sure how things will go tonight. I haven't decided yet if or what changes I will make to her basal insulin doses throughout the night. I'll make a decision after seeing how stable her sugars are with the new infusion site...

Being unpredictable is the only thing that is predictable.

Thanks for the comments... There seems to be 2 categories of people reading this blog: caregivers like myself who manage their children's Diabetes and friends who want to learn more about the disease. I will try my best to discuss topics that will benefit both. The initial idea behind the blog was to share and explain what we go through on a daily basis to keep Adele alive and able to have as normal a life as possible. It was not to get anyone's pity. I am not a big fan of pity. But if it does comfort you and make you feel less isolated because you're going through the same thing, then I'm very happy to help. If you haven't been chosen to become a Type 1 gamer and it gives you an appreciation of what it really means to be a player in a not so fun game, then I'm very happy for that as well...

Last weekend at our family Easter gathering, Adele ate one bite of Turkey, one bite of a carrot, 2 big scoops of mashed potatoes and some candy (mostly chocolate) for dessert. This doesn't really seem like the best lunch for a diabetic right? The funny thing is that her sugars were perfect all afternoon following the feast. Her sugar was floating in the 7's (7.3 then 7.2 then 7.6) for about 4 hours after the meal with no afternoon snack. Now, a few days later she has a few rice cakes, a banana and some organic (no sugar added) healthy cereal with skim milk and her sugar shoots up to 19.5! So what's my point? Put her on an all-chocolate diet? I don't think so (although Adele would be all for that :-)). My point is that playing the Type 1 game is very, very unpredictable. I was actually reading that a few years back researchers had experimented with Type 1 patients living a very structured life for a week. They went to bed and woke up at the same time each day, they exercised (same workout) and ate the same foods at the same time each day and gave the same doses of insulin. Even given this unrealistic structure, their blood sugar still fluctuated. One day it would be good at a particular time, the next it would be either too high or too low. Why? Because the body is a very, very complex system. Stress, emotions, hormones, genetics... are some of the complex variables that cannot be controlled (or explained by even the best doctors) and obviously have a huge effect on blood sugar control.

The last 2 nights have required 2 blood glucose checks instead of the usual 1. We're somewhat used to getting up once but the 2nd time is tough! It would seem that we've somewhat adapted to chronic sleep deprivation. I'm not really sure what the long term effects of this is... Highlights of the last 2 nights are:

Wednesday, April 15th
10:00 pm = 7.9
10:50 pm = 9.1 (sugar was climbing a bit so I gave 0.1 units of insulin and went to bed)

Thursday, April 16th
12:30 am = 16.4 (too high, gave 0.5 units of insulin)
2:40 am = 19.5 (still way too high, gave 0.8 units of insulin)
6:50 am = 11.2 (still high, corrected and gave a head start on breakfast bolus before eating)
8:45 am = 9.9
9:45 am = 10.2 (before am snack)
10:45 am = 9.8
11:50 am = 7.9 (before lunch)
1:30 pm = 12.2 (climbing a bit but her lunch insulin bolus hasn't peaked yet, so did nothing)
2:40 pm = 14.4 (too high and lunch bolus has already peaked, gave 0.25 units before taking the bus)
3:15 pm = 7.9 (before her afternoon snack)
4:15 pm = 7.3 (playing outside at daycare, gave her 2 crackers to avoid subsequent low)
5:10 pm = 6.3 (before supper)
7:05 pm = 7.0 (before bedtime snack)
8:30 pm = 6.6 (before going to bed, going down, turned pump off for 1 hour)
9:50 pm = 6.9
10:45 pm = 7.2 (pretty stable, snack bolus is gone, so I went to bed - she should be good right?)

Friday, April 17th
1:20 am = 16.7 (way too high, why did she suddenly go up like this? - gave 0.7 units to bring sugar down)
3:15 am = 15.4 (still too high, gave another 0.6 units of insulin)
7:00 am = 6.2

Not sure why her sugar has suddenly began shooting up like that after 11 pm. Must be those complex uncontrollable variables. It's quite the game that we play...

Easter gaming and support groups

Gaming this week had us dealing with some ups and downs. Adele's sugars were OK if I did an average. They were either on the highish side (9 and above) or borderline low (in the 4's right before bed). I couldn't seem to find patterns that enabled me to make changes to stabalise things...

Yesterday's highlights are:

1:25 am = 12.3 (high, gave 0.25 units of insulin)

7:45 am = 16.0 (way too high, I gave her 1.8 units of insulin and waited 1 whole hour before giving her breakfast thinking this would bring her sugar down)

8:45 am = 12.6 (still high, the 1.8 units should have brought her down more than that, she must be insulin resistant for some reason?, she ate breakfast and I gave her more insulin)

9:55 am = 11.4 (at least she's going in the right direction - down)

11:00 am = 6.3 (finally a normal value, she ate a snack and I bolused for it)

11:35 am = 1.9 (she came to see me and said she felt low, I saw she was pale but would not have guessed that she was that low! Values in the 1's and 2's really, really make me sick to my stomach and are dangerous... Adele immediately drank a juice and had a Dex4 glucose tablet)

11:55 am = 5.8 (OK, she's out of danger for now)

1:00 pm = 11.2 (right before Michele dropped her off at her friend's house, after the 1.9 that morning, I was very, very uneasy leaving her at her friends house - her dad does not know how to manage Adele's diabetes)

2:10 pm = 14.7 (too high, sugar seems to be climbing still, gave her 0.25 units of insulin - she's still at her friend's house so we can't be too agressive with insulin)

3:30 pm = 9.6 (ate her snack, bolused with 0.5 units of insulin, still at her friend's house)

5:20 pm = 4.0

The 1.9 was really unpredictable, her breakfast bolus was pretty much gone and she had eaten like a half hour before. Luckily she came to see me and told me she didn't feel good. I'm really not sure she would have done the same at her friend's house given that we weren't there. A simple visit to a friend's house for an 8 year old kid with Type 1 is often a VERY SCARY experience for her caregivers...

And now to the next topic for this post: Type 1 Support Groups. If you're newly diagnosed (or your child is newly diagnosed), I suggest that you join a support group. I didn't always feel this way. At first, I felt as if everyone else but us seemed to find playing the Type 1 game a piece of cake. This actually made me feel worse since I felt like I must be doing something wrong. Adele's sugars surely aren't perfect. I hate comparing numbers (and this is so easy to do with Type 1 Diabetes), but seeing real blood sugar values (including the ups and downs) along with success stories are what has helped me the most. That's why I don't sugar coat anything here. I don't care who you are, every single person playing the Type 1 game has his or her ups and downs which is why insulin is NOT a cure. Type 1 Diabetes was once a terminal disease, the discovery of insulin has just made it chronic instead of terminal. Once I realized that perfect numbers all of the time are just not possible no matter how good of a Type 1 gamer that you are and that we must rather aim for as good as possible, then I enjoyed conversing with others that really do 'GET IT'. Like Christiane said in her comment (April 3rd post), there is some comfort in this...

Spring flu season

We’re happy to see the snow melting at this time of the year. The fluctuations in temperatures seem to breed cold and flu viruses though. Adele woke up with a stuffy nose yesterday morning indicating that she’s likely fighting one of these bugs. This has also affected her blood sugars. The very good numbers we were dealing with on Saturday have been replaced by high numbers :-(

Weekend highlights…

Saturday, April 4th, 2009

1:35 am = 6.1 (turned off her pump for 1 hour)
7:00 am = 4.2
9:10 am = 6.9
11:41 am = 5.8 (lunch at McDonalds, yes we can eat there. We rarely go, maybe once every 2 – 3 months)
1:15 pm = 4.1 (going down way too fast, good thing we checked, she would have surely gone low. Gave her a juice and turned off her pump for 1 hour)
2:20 pm = 7.2
3:05 pm = 8.0
5:20 pm = 5.1
8:00 pm = 6.1
10:00 pm = 5.3 (going down, turned off pump for 1 hour, hopefully she’ll start going up again)
10:30 pm = 4.8 (pump off for 1 hour was not enough, gave her 8g of carbs and went to bed)

Sunday, April 5th, 2009

1:10 am = 7.4 (very good number, but I still turned her pump down a bit (-70% for 1 hour) in case she sleeps in tomorrow morning)
7:40 am = 11.1 (a bit high)
9:00 am = 14.3 (high, I did not correct we were going for a bike ride, I thought the exercise and active breakfast insulin bolus would bring it down)
9:40 am = 11.8 (still high, now I corrected with 0.3units of insulin above morning snack bolus)
11:15 am = 16.1 (still climbing, corrected with an additional 0.55units insulin)
11:50 am = 13.5 (going down, but still too high, corrected again before lunch)
1:55 pm = 6.4 (very good, but will it drop even lower?, ate snack)
4:10 pm = 5.8 (still like 1 hour before supper and her snack bolus was still active, so I gave her 8g carbs to prevent her from going low – hypoglycaemia)
5:15 pm = 15.7 (8g carbs at 4:10pm would not have been necessary, it was too much, corrected before supper)
7:25 pm = 17.7 (way too high, corrected again before bedtime snack)
8:20 pm = 13.6 (going down which is good)
9:15 pm = 15.6 (going up again, flu is making her insulin resistant, gave 0.9units insulin)
10:00 pm = 15.2
10:35 pm = 11.3 (dropping a bit too fast and I really want to go to bed, turned off pump to hopefully cause her blood sugar to stabilise or drop more slowly)
11:00 pm = 11.5 (pump off seems to have slowed down this drop, turned pump back on and went to sleep)

This morning Adele woke up at 13.1. This is too high, so to make sure that it isn’t due to a bad infusion site (catheter that delivers insulin inserted under the skin) we changed it this morning before going to school.

So, the game plan for today is to look at yesterday’s sugar patterns throughout the day and make adjustments to try to keep things in check. Here we go again…