What would happen if there was a cure tomorrow...

What would happen to the pharmaceutical companies that make millions on Diabetes supplies? What would happen to the pharmacies that get hundreds of dollars each and every month from lifelong customers like our family? What would happen to the companies that make insulin pumps that cost over $7000 each plus supplies to be able to use it?

I have a pretty good idea of what would happen to our family since I dream about a cure quite a bit, but what would happen to all the other people mentioned above who do not play the Type 1 game themselves but a good portion of their paycheque comes from the people who do? How would a cure affect the world's business economy?

Since the discovery of insulin in 1921 by Frederick Banting and his assistant Charles Best, the Type 1 Diabetes treatement has essentially stayed the same - inject insulin to keep the person alive by preventing blood glucose from rising too much. Most advancements have been in developing tools to enable Type 1 players to have a better chance of keeping their glucose levels closer to normal. And most of these advancements are not even close to being affordable for the middle-class player with no insurance.

How fast could a cure be found if every single person on this planet really, really wanted one?

As far as our own Type 1 game these days, Adele was a bit high this morning (11.9). Her CGM had one arrow up meaning that her sugar is trending up. This is expected since her pump was disconnected from her infusion set when she woke up. She said that she remembers the pump tubing being caught in her blankets and that she had to pull on it to get it "unstuck". I'm not really sure when that happened but she wasn't getting any insulin after her pump accidentally got disconnected which caused the high sugar. We reconnected, ate breakfast and sent her to school. Her sugar climbed up to 20.1 one hour after her breakfast, not the best way to start the day. Apparently the insulin debt from the time that she was disconnected was greater than I thought. Time to rethink our game plan for today and try to bring things back under control...

6 month report card

We just got Adele's latest A1C result this week - 8.0. What does this mean? The Hemoglobin A1C test measures long term blood glucose control (over the last 3 months), so a lower result is the goal. An A1C of 8.0 translates to an average blood sugar of 11.6. Her last A1C before this was 7.7 and the one before was 6.5. Crap, it's getting worse and worse.

The 6.5 A1C was her best ever and the last one before we started using the Continuous Glucose Monitor (CGM) this past spring. We were on a winning streak without any colds or flus. But she did have lots of lows. Often in the 2's. And she also rarely felt her lows which is really not good and dangerous. The 7.7 A1C was after the H1N1 flu. The virus had wreaked havoc on her sugars, which was one of the causes for the A1C rise. There's no simple logical explanation for the 8.0 A1C. So far, her A1C has gone up since we began using the CGM. The opposite is usually the case. Is it worth all the effort? Let's see what the 1st semester report card says...

We started using the CGM back in mid May. We've been trying to get 6 days out of each sensor. On average, they've been lasting about 5. We currently have the low alarm set at 4.5 (if blood sugar is 4.5 or lower, the pump alarm will go off). We have not set or used the high alarm (simply to avoid too many annoying alarms throughout the day). Generally, Adele has been wearing one sensor per week. This gives us 1 day (if the sensor lasts for 6) or more days of finger prick after the sensor is removed until a new one is inserted. We're continuously learning and here are our impressions on this new technology.

I'm a glass half full kind of guy, so I'll start with what we like:

• An added sense of security. I always feel much better when Adele has a sensor on and that I am confident that the system is calibrated correctly. This is especially true when we're out and about, during the night or when she's at school or at a friend's house. The low alarm set at 4.5 eases some of the hypoglycemia (low blood sugar) worry. It's like removing the blindfold that prevents us from seeing where her blood glucose value at a given moment because without it I ALWAYS wonder where her sugar is at and where it's going.
• Less finger pricks. Adele's fingers now have a bit of a chance to heal from all the finger pricks. In order to have good blood glucose control you need to know where the blood glucose level is going so you can make corrections before it's too late. The CGM gives blood glucose readings every 5 minutes as well as a graph (and arrows) indicating the direction that the blood sugar is going in - either rising, dropping or relatively stable.
• Less interuptions in Adele's activities. It litterally takes a few seconds to check her sugar. I simply ask her where she's at and she glances at her pump and tells me. No need to get needles ready, handle meter and strips... We really appreciate this if we're outdoors or at the mall... This also makes most middle of the night checks much less gruelling - if she's high or low and there's a bit of doubt as to the precision of the CGM reading, we still do a finger poke.
• More blood glucose values. This enables us to make small adjustments thus maximizing our chances of a good blood sugar value during the middle of the night check. I sometimes get OCD checking 2 or 3 times per hour before going to bed.
• Less hypoglycemic episodes and more hypoglyemia awareness. Before using the CGM, Adele would go low in the 2's about 1 or more times per week. Now, it's like once a month and usually due to a sensor that is off and needs re-calibration.

And now what we don't like as much:

• Painful insertion. The emla cream helps, but this is still not a very pleasant experience. Adele is quite the champion though and now goes through the sensor insertion without shedding a single tear.
• Another infusion set. The CGM adds another foreign object inserted into the skin and attached to the body. This also adds a sensor insertion about once a week in addition to infusion set changes every 3 days. It has added more tasks (which require more time) to our Type 1 management schedule.
• Itchy and chaffed skin. The skin under the sensor traps moisture. Adele starts complaining of the area being very, very itchy after about the 4th day. Some days she just begs to remove it in order for her to itch the skin underneath. The skin under the sensor become red and inflammed (like a diaper rash) after 5 or 6 days.
• Blood Glucose readings every 5 minutes can sometimes be too much information. I've often found myself correcting too soon after a bolus if I see arrows and a blood sugar trending up. Because of the delay in reading updates (CGM uses sugar in the interstitial fluid and not blood) the CGM is a bit behind if the blood glucose is changing rapidly. I need to not be as quick to correct a high since often the sugar is on it's way down, but not reflected yet by the CGM.
• It sometimes gives false readings when not calibrated properly. This weekend, upon waking, Adele's CGM indicated that her sugar was 4.5. I needed to calibrate (by doing a finger prick and entering the result in the pump). The meter indicated 2.6. She was low and the CGM had not caught it.
• Expensive and not covered by all insurance plans. We're lucky in that our insurance plan is one of the first to cover the CGM supplies. We do test less when she's wearing a sensor, so in the long run they do save some money on strips.

So 5 pros and 6 cons (the last one does not apply to us, so 5 cons really). So, it's a tie if you're counting. Given this, the final grade is that we'll still continue using the technology. We've learned alot since we've started, so I'm optimistic that things will even get better still. My goal is to lower her A1C (low 7's or high 6's) while still keeping lows at bay. That is the goal and I still think that the CGM is a very useful tool to help us get there.

In the meantime, happy Type 1 gaming and look out for the JDRF float in the Greater Moncton Santa Claus parade on Saturday, November 28th. Adele is very excited to be part of the parade this year!

It's all new, but still all the same

Last Saturday (November 14th) was World Diabetes Day. Our whole family including my parents, sister's family and in-laws attended the Famille Arseneault benefit concert at the Capitol theater. It was a great evening that raised money for JDRF as well as brought awareness to our cause.

I'm not sure how it is for other Type 1 gamers, but Adele's insulin needs and patterns are very, very different during the week compared to weekends. After some pretty good numbers on Thursday and Friday, things got a little out of control during the weekend. Adele's sugar seemed to be either high (above 10) or she needed to take in extra snacks to avoid a low. I'm not sure why she suddenly became very, very sensitive to insulin after lunch? On Saturday, I thought it was due to swimming, but the same pattern also happened on Sunday without any swimming. Our bodies are soooo complex, a fact that becomes very evident when playing the Type 1 game.

Here are the highlights of the past few days:

Saturday, November 14th, 2009

7:15 am -> 2.6 (sensor indicated 4.5 before calibration, ate 35.9g carbs for breakfast, 1.6 units insulin)
9:30 am -> 5.4 (ate 40g carbs, 1.0 units insulin)
11:00 am -> 5.5 (ate 47.3g carbs, 0.5 units insulin)
12:00 pm -> 7.7 (before swimming, 8g carbs, no bolus, removed pump since it can't be worn in the water so now she is getting no insulin)
1:25 pm -> 9.7 (a bit high, 68g carbs - it was a birthday party, 1.6 units insulin)
2:30 pm -> 4.9 (going down, 23g carbs, no insulin)
3:15 pm -> 2.9 (way too low, 35g carbs, no insulin)
5:00 pm -> 7.9 (30g carbs for supper, 1.0 units insulin)
9:30 pm -> 11.0 (too high, 20g carbs before bed, 0.7 units insulin)
11:10 pm -> 12.4 (still too high, 0.4 units insulin)



Sunday, November 15th, 2009

2:00 am -> 6.6 (turned pump off for 1 hour)
8:15 am -> 4.5 (sensor indicated 6.3 before calibration, ate 33g carbs for breakfast, 1.3 units insulin)
9:45 am -> 8.1 (before snack, ate 20g carbs, bolused with 0.8 units insulin)
10:45 am -> 4.5 with one arrow down (not low yet, but she will be soon if she doesn't eat, ate 42g carbs, gave a very small bolus of 0.3 units insulin)
11:45 am -> 4.3 (ate 69g carbs for lunch, 1.5 units insulin)
12:50 pm -> 3.9 (before going over to her friend's house, ate 40g carbs, no insulin)
2:00 pm -> 4.3 (at her friend's house, parents do not understand Type 1 so lows in this case are very dangerous, ate another 23g carbs, no insulin)
2:40 pm -> 4.2 (she's home now, but still seems to be going down, ate 18g carbs, no insulin)
4:30 pm -> 10.7 (now she's too high, we overcorrected to avoid lows, 1.0 units insulin)
5:30 pm -> 14.9 (still going up before supper, ate 55g carbs, 1.7 units insulin)
8:10 pm -> 11.5 (still high, ate 24g carbs, 1.1 units insulin)
9:45 pm -> 14.3 (still too high, 0.8 units insulin)
11:20 pm -> 9.2 (going down)


So 58g of extra carbs on Saturday and 81g of extra carbs on Sunday to treat lows. I don't like that very much, so I've made corrections in Adele's scales which translate into less insulin after lunch and more after supper. So far, these changes seem to be working. But then again, her insulin needs during the week are quite different than on weekends... One day at a time. You can't look too far ahead while playing the Type 1 game.

Love part two

Dear anonymous, thanks for your comment on the last post about LOVING Diabetes. I had the feeling that this post would not agree with everyone and I appreciate your honesty. I've been thinking about this one for a while now trying to make sense of this Type 1 game that we play.

A while back, I decided that I wanted to someday be able to say that I'm a better person because of Diabetes. I had absolutely no idea how and didn't know if I really could, but I decided that I wanted to try my best to turn this negative into a positive. I'm still not there yet and am not sure if I ever will. I've struggled (and still do) so much with this. Like you, I constantly worry about Adele's short term well being as well as her long term prognosis. With this constant stress, sleep and peace of mind are not what they used to be. Our whole life is not what it used to be.

But recently, I've come to realize that when I think about this in a negative way (why us? i just want to sleep? i'm so tired? if only this could just go away?) I am letting Diabetes win. The more negative thoughts and actions that I have, the more I am feeding the negative aspects of Diabetes. After a while these thoughts become me and I turn into a bitter father full of hatred. My attitude towards Diabetes then becomes Adele's as she grows older. Do I want this to be her destiny? I can't control the fact that she has Type 1 and some of it's outcome, but this is one thing that I can control. It is my choice. Thinking about this some more, I realized that the sure and only way to beat this is to love it. By loving what you hate you begin to sow good instead of bad. It is part of Adele and I love her dearly, so I also need to love her Diabetes as well. At first I also thought that this was absurd and not possible, and maybe it isn't, but now I have decided that it is the direction that I want to go in. By embracing Diabetes and feeding the positive as much as I can, I will be drowning the negative. I believe in the importance of venting and talking about how difficult and stressful living with Type 1 often is, but also to not dwell on this too long since it will become me.

I don't expect everyone to agree, but simply wanted to share the idea at the beginning of my journey.

Life isn't only about living for many years. I've come to believe that life is about living fully during whatever time that we have without self-pity, being as happy as possible, making a difference by helping others and enjoying the adventure. If Adele can love herself and her Diabetes enough to live this way, I believe that I will have succeeded as a father. Thanks for reading...

I love Type 1 Diabetes

What would you do when a doctor tells you that the diagnosis is Type 1 Diabetes, a chronic disease that occurs when the immune system mistakenly destroys the body's ability to metabolize sugar leaving patients insulin-dependant for life? Presently, it can't be prevented and there is no cure. It is humanly impossible to control this sugar metabolism as well as the normal body does for a non-diabetic, but the better control that you can achieve, the less chance that long-term complications will arise. Good control "lessens" the chances of developing blindness, kidney failure, heart disease, nerve damage... but there are absolutely no guarantees. For over 200,000 people in Canada, this is what they are facing. How would react to this news? What would you do?

For us, this news was given to us a little over 7 years ago, so I've had a while to think about it. As a parent of a Type 1, the single thing that I would most like Adele to achieve is to learn to LOVE her Diabetes. Once true life-long love is achieved, all else falls into place. She will take care of it, work at it, continuously try to learn about it and recognize the strength that it has given her. Type 1 robs us of alot, but like every challenge, it breeds growth and creates opportunity. There is ALWAYS a choice to be made. What would you choose? So that's the goal. Now how do I help Adele get there?

In the meantime, the Type 1 game continues. Adele's sugars have been pretty good, with some ups and downs the last few days. I'm catching the lows and highs before they happen, but I'd like to be able to do this with less extra snacks and insulin corrections. Here are some highlights:

Thursday, November 5th

7:55 am -> 9.5 (too high before breakfast)

8:55 am -> 8.0 (going down, maybe too fast?)

9:35 am -> 5.9 with one arrow down on her CGM (yup, she's dropping too fast, gave 18g carbs before recess)

10:10 am -> 6.0 (low avoided)

10:50 am -> 7.9 with one arrow up on her CGM (going up too fast, gave 0.7 units insulin)

11:45 am -> 9.7 (too high before lunch)

1:05 pm -> 6.2 with one arrow down on her CGM (dropping too fast, gave 6g carbs to avoid low)

2:20 pm -> 10.1 with one arrow up on her CGM (corrected with 0.6 units insulin before she got on the bus)

3:15 pm -> 8.7 with one arrow down on her CGM (going down before snack)

5:00 pm -> 7.4 (good before supper)

7:00 pm -> 8.8

9:50 pm -> 11.1 (gave 0.2 units insulin)

10:45 pm -> 11.2 (gave another 0.2 units insulin and went to bed)

Friday, November 6th

1:00 am -> 7.2 (reduced basal insulin to 50% for 1 hour to make sugar go up a bit)

7:00 am -> 7.7 (good sugar before breakfast)

On a final note, November 14th is world Diabetes day. Help us raise awareness by telling a friend and helping us spread the Type 1 love !!!

Happy Anniversary !!

Anniversaries are a time of the year where people may celebrate. They are a reminder of how long it has been and how long we've come. They remind us of all of the work that we have done. They remind us of our survival.

For us, October 31st not only means Halloween, but the anniversary of Adele's Type 1 diagnosis. A Type 1 diagnosis on Halloween... How ironic. Adele was constantly thirsty and soaking diapers non-stop in October, 2002. I had a feeling something wasn't quite right, but this was only a few months after her and my Celiac disease diagnosis. After a bit of research, I had already associated the symptoms with Type 1 Diabetes before calling our pediatrician asking for a Diabetes test. The doctor told me that the test for Diabetes was done using urine, so I dropped off some of Adele's urine at the hospital on Halloween morning. She was peeing so much by this point that I probably could have just wrung out her diaper and I would have collected more than enough. I couldn't concentrate at work that day. I just knew that our life was going to change based on the outcome of that urine test. I was right. "Go easy on the Halloween treats tonight" were the words that the pediatrician told me on the phone when she called. She told us that they had found sugar in Adele's urine and that it could be Diabetes but that it could also be a sign of some other type of infection. I could read between the lines, I knew she was just trying to alleviate the shock. We were told to head for the hospital to be admitted and for more tests. We should have gone at that time on Halloween night, but she then told us that we could wait until the first thing the next morning. We have come a long way in 7 years. But then again, I can't help but think of all of what these 7 years of Type 1 gaming have done to Adele's body... Then I tell myself to not go there since I can't do any more than I'm already doing.

Halloween always wakes up mixed emotions inside of me. It reminds me of how long we have been playing the Type 1 game. With every year comes the increased risk of developing complications. It also reminds of how society associates fun and rewards with eating junk food. And then we wonder why North Americans are so unhealthy.

People sometimes ask us if we bother trick or treating since Adele can't eat the treats? This is a misconception. Adele can eat some treats as long as they're Gluten-Free (because of her Celiac disease) and preferably in moderation. Her body no longer produces insulin like other non-diabetics. She needs to get her insulin from an external source. Technically, she could eat as many treats as she wants if she also receives the right amount of insulin. But in reality, a huge amount of carbs makes for a large amount of insulin and a greater risk of a high or a low blood sugar afterwards. We choose to let her have treats in moderation (like we would if she did not have Type 1). This is much better than the old school Type 1 treatment that did not allow any sweets at all. New fast-acting insulins and intensive therapies require much more work, but also bring the Type 1 gamer's life closer to that of a non-diabetic. For now the journey continues... The journey towards the dream: a cure for Type 1 Diabetes, and the journey of doing everything in our power to help make Adele's life as close to normal as possible in the meantime. We WILL NOT give up until we succeed...