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.