Monday, September 28, 2009

Does anyone know the truth?

I came across a doctor's website while looking for an A1C to average blood glucose conversion chart a few days ago. This doc was saying that the North American guidelines for blood glucose control were not tight enough. His point of view was that if diabetics didn't have perfect blood glucose control that they were basically setting themselves up for long term complications. The less control, the sooner these problems would arise. The website is http://www.rajeun.net/HbA1c_glucose.html.

Then today, I was watching the Dr. Oz show (not really sure how valid his medical opinion is given it's a TV show?) and he measured the A1C of a severly overweight non-diabetic woman who needed to loose some weight and get healthier. Her A1C was 6.2 (average blood glucose of 8.0). For a Type 1 Diabetic, this would be a very good value. Adele has never been that low. Her best ever value was 6.5 (with too many lows really) and her last value was 7.7 (with alot less lows). Dr. Oz said that anything above 6.0 was a concern. So, what does that mean?

This makes me quite depressed. The pediatric endocrinologists at IWK in Halifax are telling us that it's OK to even have an A1C in the 9's (average blood glucose above 13.6) for a child Adele's age. Now, who's right? Are North American doctors giving diabetics a false sense of security by keeping A1C guidelines so high? Given that the perfect control (same as a healthy non-diabetic) is "virtually" impossible while playing the very, very complexe Type 1 game, are these guidelines so high simply to avoid severe and very dangerous lows? Are these guidelines so high to avoid Type 1 game burnout trying to bring blood glucose down to normal values? Looking at the numbers too much can really get to you after a while, since there is always room for improvement as well as so many outside factors that come into play.

So, are we kidding ourselves thinking that Adele will not have long-term complications simply because our control is very good (even excellent) according to the North American guidelines or are we just delaying the inevitable? Are we being lied to? Maybe this is just what I need to push me towards ensuring that I do everything in my power to give her the best possible blood glucose control (even if it's not perfect)? It's all that I can do right? Or maybe it's additional fuel for my Type 1 awareness drive and JDRF fundraising so that a cure for this terrible disease is found before it's too late? Hold on tight, this Type 1 ride isn't over yet...

Thursday, September 17, 2009

The MBS Cyclebetes 200 and back to school...


I always get emotional each year at the start of our Mike's Bike Shop Cyclebetes rides. Adele and Michele are there. I look around at all the people, supporters and riders that are there essentially because of me. The ride could not happen without the full support from the Mike's Bike Shop cycling club (my friends) as well as all of the volunteers that come together to help with registration, count pledge money, drive the support vehicles and everything else that needs to be taken care of, but I am still the catalyst that started it all. I feel so overwhelmed that all these people step forward and enable me to keep on doing this. I'm a very, very lucky man. Thank you.

Since the 1st ride in 2007, this one was the best in my opinion. We had more riders and raised more money than past years. 60 riders raised $9000 for JDRF. Wow !! I appreciate all the sacrifices that alot of people make to enable this ride to happen. Again, thank you. I want to do everything that I can to help Adele with this Type 1 sentence. The more people can be aware and work together, the sooner my dream will come true...

Last week we went to IWK in Halifax for Adele's diabetes clinic apointment. We go to Halifax once a year to visit her gastroenterologist and we also squeeze in an apointment with the endocrinologist while we're there. It was also time for Adele's 3 month A1C. This test mesures the average blood glucose for the past 3 months. It is used to measure how good of a job that you have been doing playing the Type 1 game in the past 3 months. Adele's result was good, but had gone up since the last the last one (before she was on the Continuous Glucose Monitor - CGM). Why? Were we slacking off in her care? No. I think it is a combination of the fight with the H1N1 virus a few months ago (caused her sugars to go high), getting used to using the CGM and the fact that she has much less lows when we're CGMing. Sometimes an excellent A1C result is also accompanied by lots of low blood sugars, so you need to be careful when interpreting these results. We're going to try to improve for the next one (hopefully no major flus this time around) while continuing to minimize lows. That is one thing that we have noticed since being on the CGM, Adele has become better at recognizing her lows. The hypoglycemia unawareness has been lessened since she is low less often.

So, we're already in week 2 of school. The transition has been going well so far. Adele really likes having her CGM sensor at school since it is much easier for her to check her blood sugar. The sensor insertion is much better as well, so now Adele actually asks for a new sensor as soon as the old one expires.

A few nights ago, Adele suddenly became very insulin resistant in the evening and throughout the night. Her sugar kept creeping up and wouldn't come down even if I was being quite aggressive in giving her insulin. She started in the 12's, then 13's and climbed all the way to the 17's before I went to bed. I double corrected with more insulin and she still wouldn't go below 12. I even brought her nightime basal insulin rate up from 0.3 units/h to 0.35 units/h and she still woke up in the 12's. The two following nights were better, so I left the nightime basal at 0.35.

Then, without warning, this insulin resistance went away. Sunday night, Adele was 7.7 when I went to bed. I set the alarm clock to wake us 1.5 hours later, but for some reason it didn't go off (maybe it did and we turned it off, I really don't remember). I woke up at 2 am (like 3 hours after going to bed) and checked Adele's CGM. It said 5.2 with 2 arrows down (this means that's she dropping fast). I double-checked with a finger poke. Glucometer said 4.2 in blood. So, she wasn't low yet, but I just caught her in time. I gave her 5 gummies and turned off her pump for 1 hour and went to bed. A half hour later her pump alarm goes off saying her sugar is 4.5 (we have the low alarm set at 4.5). I acknowledge the alarm and go back to sleep, she's eaten and her sugar is slowly going up. A half hour later her pump alarm goes off again. Her sugar is still 4.5. I turn off her pump for another half hour, reduce her nightime basal back to 0.3 units/h and go to sleep (finally!). She wakes up at 5.6. I wake up exhausted. There was no mention of nights like these in the Type 1 game brochure. If only we could simply return the game and get our old life back...

Thursday, September 3, 2009

Cyclebetes part deux

I'm back to real life after my Accu-Check Cyclebetes national relay experience. I've been feeling withdrawl from the awesomeness that was the Cyclebetes relay, but am still quite busy organizing our local Cyclebetes 200 ride in support of JDRF. Our ride is on Saturday, September 12th. The donation cheque presentation and photos will take place at 7:45 am at Mike's Bike Shop in Dieppe. The ride leaves at 8 am sharp. Drop by to say HI and show your support ! You can even make a whole morning of it by going to the Dieppe market afterwards.

This past weekend, I took Adele and her friend to TreeGo at Centennial Park in Moncton. After a brief training session, they started climbing up the first obstacle which was a climbing wall. I was following them from the ground. Before starting, I asked the staff how long it would take them to complete the kid's course. They told me it took about 1 hour which meant that Adele would be up in the trees for an hour and I would be on the ground unable to physically do anything to manage her Diabetes. Completing the course also requires a physical effort which meant that she was at risk of going low and it requires alot of balance while up above the ground. Since low blood sugar could leave her light headed and dizzy, a low while up there was not an option and very dangerous. So after telling myself that this whole thing was still a good idea, I proceeded to keep a close eye on Adele's blood sugar readings via her Continuous Glucose Montior. Her sugar was in the high 4's before her afternoon snack with a slight downward trend, so I didn't bolus for her snack. A half-hour after that she was still floating in the 4's, so I turned off her pump. An hour after that she was still in the low 5's, so I turned off her pump again for another half-hour. I checked again right before she was about to climb onto the course and she was 8.0 with one arrow up (trending up). I think I overdid it and that the last half-hour of pump being off was a bit too much? I had no idea what effect this activity was going to have on her sugar, so I left things as is. Her pump was back on again, so she was getting 0.3 units of insulin per hour via her basal. I gave her 2 fruit to go to put in her pouch pack in case she felt or went low while up there since I couldn't get food to her.

So, what was the outcome? She rocked the TreeGo course and had a blast ! Her sugar had stabilised at 10.3 (no arrow) when she finished. I gave her another 0.3 units to bring it down. A half hour later she had still climbed to 11.5 so I guess I had overdone it with sugar intake and pump turned off. That's how this game goes, you make the best decision possible given the data that you have and sometimes you get it right, sometimes you don't. And you NEVER, EVER know what the outcome is going to be. That's the constant stress that gets to you sometimes.

Like all other kids, Adele is back to school next week. She will be starting grade 4. I met her teacher's aid this week. We were lucky in that her TA this year is the same one that she had in grades 1 and 2, so she knows Adele and she gets the Type 1 game. Hopefully, the Type 1 game transition back to the school routine goes smoothly...