Like a rollercoaster, but less fun

So as usual, we're still playing the Type 1 game. Last night after real good numbers all day (Adele's sugar readings were between 3.8 and 9.2 - normal values for non-diabetics is between 4 and 8) she started to go down before her evening snack and this kept up as she was trying to go to sleep. 3.3, up a bit to 4.7 then down again to 3.7. I temporarily turned off her pump so that she would not get any additional insulin and go even lower and she ate 20 grams of carbs with no insulin bolus. 1 hour later while sleeping she had gone up to 6.9 - very good. 1 hour after that she had shot up to 18.7! Here are the highlights after that:

10:50 pm = 18.7 (gave her 0.8 units of insulin to hopefully bring that down and went to bed)

12:50 am = 18.6 (gave her an additional 0.55 units to try to bring down)

2:50 am = 20.0 (now I knew she was insulin resistant for some reason, I gave her 1.0 units and was very tired so I just went to sleep and hoped that it would be enough and not too much)

6:45 am = 5.7 :-)

And since this morning she's been in the low 4 range. Good numbers (and normal numbers) for a non-diabetic, but a bit too close to being hypoglycemic which is what happens when sugar goes below 4, especially when she's at school.

So, what caused this sudden rise in sugar last night followed by the sudden drop this morning? Why was her body so resistant to insulin last night and so sensitive to it this morning? I have no idea. It's just part of playing the Type 1 game. It happens to all players. Even a pro cyclist who has EXCELLENT control of his diabetes and is in tip top shape goes through this as well (Phil Southerland talks about his highs and lows in his blog http://philsoutherland.blogspot.com/ *Note - in the US they measure blood sugar in different units than in Canada, to convert values to mmol/L simply divide by 18).

Force feeding and game highlights

Thanks for the comments.

I had never really noticed what Adele had for supper in the picture from the January 7th entry. It looks like one of her favorites which is cheese/veggie nachos with chocolate milk and ice cream for dessert. And yes, we also go through times (when she’s low or going low) where we just want her to eat something. For Type 1 diabetics who can’t afford or choose not to be on the pump, they need to eat at mealtime. A light meal means less insulin which also translates to a light snack or no snack at all or an extra insulin shot to cover the snack. This can get quite stressful when dealing with this with young children. We went through this when Adele was first diagnosed at 2 years old.

Sugars have been good with some ups and downs yesterday. I’m quick to point out when things don’t go well, so I thought I’d also post when things are going better.
Here are the game highlights for the last 2 days:

Wednesday
6:55 am = 7.0
9:50 am = 6.2
11:45 am = 6.9
1:45 pm = 15.7 :-(
3:00 pm = 12.1
5:15 pm = 9.7
8:30 pm = 14.4 :-(
10:30 pm = 3.4 :-(

Today (Thursday) so far
7:05 am = 3.8 (should be higher when she wakes up – need to back off morning basal)
9:00 am = 8.6
11:15 am = 7.5
1:50 pm = 4.3
2:50 pm = 5.6

I’m still not sure about this evening though, Adele went high a bit then too low (hard to eat when she’s sleeping :-( )

Sleepless in Dieppe, New Brunswick

You can’t always win playing the Type 1 game. We’re going through a losing streak at the moment.

Those of you with children are familiar with sleepless nights. Most (if not all) parents have gone through this at one point. Parents with children living with Type 1 go through this much more than other parents of non-diabetics.

We choose to wake up once every night to check Adele’s sugar to make sure she doesn’t go low and also to correct highs if her sugar is above 9.0 mmol/L. But every once in a while, we need to get up more than just the once. Last night was such a night. Here are the highlights of last nights game:

10:45 PM = 14.6 (too high, gave 0.55u insulin to try to bring it down)
1:10 AM = 23.7 (way too high, gave 1.0u insulin)
2:30 AM = 19.8 (going down, but still not enough, gave 0.3u insulin)
3:50 AM = 20.5 (going up again, gave another 1.0u insulin)
6:45 AM = 16.3 (still too high, gave 0.6u insulin and changed pump infusion site – catheter that goes in the skin and delivers insulin from her pump)

Now I need to mention that just a few nights ago all this insulin (a total of 3.45 units of insulin with no food) would have caused Adele to never wake up. It would have put her in a coma for sure if not killed her. What is causing this sudden unexplained rise in blood sugar? We don’t know, it’s just part of the game. It could be that she is fighting a cold or flu, but she doesn’t have any symptoms other than feeling crappy because of the high sugars. We sent her to school. Let’s hope our losing streak ends soon! I can’t wait to sleep tonight… I hope we can.

Thank you Dr. Banting, but we ain't done yet...

Dr. Frederick Banting and Charles Best discovered insulin in Canada in 1922. Prior to this discovery, a Type 1 Diabetes diagnosis meant slipping into a diabetic coma and a certain death.

http://www.discoveryofinsulin.com/Home.htm

The discovery of insulin meant that victims of Type 1 would no longer die from the disease. Or should I say die from the disease right away. For a non-diabetic, blood sugar continuously varies throughout the day between 4 and 8 mmol/L. For someone playing the Type 1 game, the goal is to try to come as close as possible to this. But like with any other game, it is impossible to win all of the time. The longer the unbeaten streak, the more difficult it is to keep it going. As humans, eventually we make mistakes and the winning streak is over. In this sense, the Type 1 game is no different than all the other games that we play, but the stakes are higher. Each and every time that the Type 1 diabetic’s blood sugars drops below 4 (hypoglycemia), he/she is in immediate danger. All cells in our body need a constant supply of sugar and will eventually shut down and die if they are starved which is what is happening during a hypoglycemic episode. Each and every time that the Type 1 diabetic’s blood sugar rises above 8 (hyperglycemia), the extra sugar makes the blood toxic causing damage to the body's organs.

Talk to anyone living with Type 1 and they will tell you that hypoglycemia and hyperglycemia are pretty much a daily part of the very complex Type 1 game. This is the reality which is Type 1 gaming and why insulin is not a cure.

Is it supposed to become easier?

Even after over 6 years of having Type 1 Diabetes being part of our daily family life I realize that it doesn't really get any easier. I mean you become more knowledgeable, but it's still a constant struggle each and every minute of every day. With work, we tend to say "If I can just finish this project and get to the weekend". With school, we tend to say "If I can just finish this homework, exam...". But you can't say this with Type 1 Diabetes, it's a life-long, 24 / 7 struggle that never ever goes away.

As a perfectionist, for a long time I beat myself up thinking that everyone else (or most families that we had contact with) living with Type 1 had stable sugars all of the time. They'd talk about values of 5 or 6 day in and day out. With us, we rarely have a long string of perfect numbers like that. Adele is either too high or too low at least once every day or every other day. I kept thinking "What were we doing wrong or different than everyone else?" I now know that our reality is indeed normal and pretty much what everyone else is going through. It made me feel better reading blogs of professional athletes who live a very, very disciplined life and have excellent control of their Type 1 Diabetes and still have similar ups and downs. It's part of the Type 1 game no matter how good of a gamer that you are...

That's why insulin is not a cure for Type 1 Diabetes. Even with the tightest control, the diabetic will still have high and low blood sugar values regularly. The difference between good and bad control is the severity, duration and frequency of these highs and lows. In all cases, long term damage is being done to vital organs.

At what cost?

Type 1 Diabetes is a very, very expensive disease. It's sad but not all patients are able to afford the same treatment.

Adele's treatment currently costs between $900 and $1000 cdn per month. This includes all of her test strips, pump supplies, insulin and everything else that we need to best control her Diabetes. And this does not include the insulin pump itself which cost a bit over $6000 cdn. The Type 1 game is a very expensive game to play. Too bad we couldn't decide, because our choice would be that we didn't want to play anymore... But that's not how it works. I'll elaborate on that some more in a future post.

We would certainly go bankrupt if it weren't for our insurance plan that now covers 100% of most of Adele's supplies. But not all families have that luxury. I've heard stories of families where one parent's full salary was going to their child's diabetes care. I know of someone who sold their 2nd car in order to buy an insulin pump. Imagine having this financial burden on top of all of your other bills... Would you be one of the lucky ones who can afford the best possible Type 1 treatment for you or one of your loved ones?

Math

Diabetes is a constant balancing act between sugar and insulin. All food intake must be accompanied by insulin to flush out the digested food sugar from the bloodstream. How do we know how much insulin to give Adele?

First and foremost, we test Adele's blood sugar before she eats so we know where she's at. We currently aim for a sugar of 7 before meals. This means that if her sugar is lower than 7, we will give her a little less insulin and if her sugar is above 7, we will give her more insulin to hopefully bring it back down to 7. Our correction factor is currently 16. So, if her sugar is 3.6, we subtract 3.6 - 7 (target sugar) = -3.4 divided by 16 (correction factor) = -0.21 units.

Then we need to count carbs consumed. Basically we read food labels and calculate how many grams of carbs have been eaten. At home we use a scale to weigh Adele's food. We started this when Adele was younger and found that it gave us more precise numbers which usually (hopefully) leads to better sugars. With the weight of the food, all you need to do is multiply by the carb factor (you can find these factors on the web for pretty much all foods). For example, if Adele eats a toast that weighs 20 grams. This 20 multiplied by the carb factor (0.44) gives 8.8 grams of carbs for the toast. So before each meal, all food needs to be mesured. We write these values on Adele's Diabetes worksheet.

After the meal, we need to find total carbs consumed. We then divide total carbs by the scale for that particular meal. For example, if she ate 75 grams of carbs for supper divided by a scale of 37, it gives us 2.03 units of insulin. Scales are determined with the help of our Diabetes nurse and through trial and error.

I must now factor in the correction based on Adele's sugar before she ate (see calculation above). So, 2.03 units of insulin - 0.21 units = 1.82 units. We round this number and give her a bolus (immediate "shot" of fast-acting insulin) of 1.80 units of insulin to hopefully cover the food that she just ate. All this and there is absolutely no guarantee that this insulin amount will be the right dose. It's all part of the daily Type 1 gaming activities that we play...

**I apologize for the blurry photo :-)

Appreciate the little things

Our New Year's plans were quite simple. We went out for supper with my family, went to my sister and brother-in-laws and had my parents over for the night. Adele was very excited to have her grand-parents sleep over.

After a low (2.6) right before leaving for supper, Adele's sugars were very, very stable for a whole 24 hours! Yippee!! On New Year's eve, she was 6.8 before supper, then 7.2, then 6.7 and 6.8 at 10pm with no bedtime snack. The bolus that I had given her for her supper was gone and her meal was digested, so I could relax knowing that the basal insulin programmed in her pump seemed to be enough to keep her sugar in check. I would like to say a big thanks to the Type 1 gods for this gift enabling us go to sleep confidently at 10pm. I really appreciated it, even more than being able to stay up to welcome the new year!

Sugars were also good on New Year's day aside from a low in the morning which Adele felt and told us - she was 3.3. She often doesn't notice until she's much lower than this. She started to creep up though just before bedtime. She went up to 13.1 a few hours after her evening snack. I guess the stable streak had to end at some point. It's all part of the never-ending adventure that is the Type 1 game...