Sunday, July 26, 2009
Unlike Type 2 Diabetes, Type 1 is an autoimmune disease. Type 1 occurs when a person's immune system mistakenly destroys it's own insulin producing cells in the pancreas. The immune system flags these good cells as bad and kills them off like it would with a flu virus for example. So far, this cannot be prevented or reversed.
Type 1 Diabetes is therefore caused by a faulty immune system. The immune system is not weak, it's just not very good at distinguishing good cells from bad ones. Individuals with one autoimmune disease have a greater risk of developing others. Autoimmune diseases have a genetic factor. Children of parents (both or just one) with an autoimmune disorder have a greater chance of developing one as well.
Before 2002, I didn't really know what autoimmunity was, but I was about to find out. Adele started to get sick in the summer of that year. After many doctor's visits, a specialist in Halifax told us that she had Celiac disease. Celiac disease is an autoimmune disorder in which the ingestion of a protein called Gluten causes an autoimmune reaction that causes damage to the lining of the intestine. There is no cure and it cannot be reversed. Treatment is a Gluten-free diet for life. Gluten is a protein present in wheat and it's derivitives (rye, oats and barley...). We had never heard of such a condition and didn't know what Adele could and could not eat when we first started on the diet. The specialist strongly recommended that Michele and I get tested as well (even if we didn't have any typical obvious symptoms). One month after Adele's diagnosis, I also was also diagnosed with Celiac disease. Reading up on the disease and other autoimmune disorders, I easily recognized the symptoms of Adele's developing Type 1 Diabetes one month later. Three blows in three months - ouch ! Two years later, Adele was diagnosed with a 3rd autoimmune disease called hypothyroidism. There is also no cure for this condition. The treatment is synthetic hormone therapy (taking a synthroid pill every day) for life.
Close to 7 years after being diagnosed with Celiac Disease and being on a strict Gluten-free diet, I can truly say that Adele saved my life. The atypical Celiac symptoms that I had have all gone away and my new definition of what being healthy feels like is amazing. It's incredible how avoiding the poison that I was putting in my body has changed my life. Part of this extra energy and clarity gained is spent on JDRF awareness and fundraising. Type 1 Diabetes is the hardest of Adele's autoimmune diseases to live with. It's the least that I can do for Adele in return for what she has brought to my life. So now you know part of what truly motivates me keep fighting for the cure and to finally be able to win the Type 1 game...
Also, I forgot to thank those who leave comments. I appreciate the feedback. Christiane, good to hear that your daughter has started pumping. If you have any questions, send me an email (firstname.lastname@example.org). I am not a doctor, but I find that I gain more from discussing with Type 1 gamers vs. book smart non-gamers.
Tuesday, July 21, 2009
Adele is now completely recovered from her battle with the H1N1 virus. My wife Michele is still coughing and a bit tired, but back to work. I somehow managed to avoid getting sick. We're hoping that we built up antibodies for the predicted 2nd wave of the Swine flu this fall.
I'm having a few problems with my attitude in regards to the Type 1 game as of late. I'm not sure if it's fatigue from all the work my immune system must be doing to keep me from getting sick or just a normal part of playing a game with no breaks whatsoever, but I'm bitter towards the big D (Type 1 Diabetes). I resent that we're on vacation from work next week, but not from playing the Type 1 game. I resent that some people in our lives just don't get Type 1 and make no effort whatsoever to learn. I resent that Adele can't just go to summer day camp like the other kids her age without us meeting with her caregivers explaining the basics of the Type 1 game then being in contact with them many times throughout the day to try to make Adele's experience as normal as possible. I resent that days at the beach are filled with hourly blood sugar tests, connecting / disconnecting Adele's pump (it can't be worn in the water) and roller coaster sugars because she's getting her insulin in boluses only and no basal when pump is disconnected. I resent that the thought process in my mind that is trying to predict how much insulin she needs at every second of the day and night just can't be turned off. Even after almost 7 years, the Type 1 game still gets to me...
And now, to finish the post on a more positive note, Adele's sugars were very, very good today, they floated between 5.0 and 9.4. Her basal rates are still different than what they were before the H1N1 flu. A few changes throughout the week to her meal carbohydrate - insulin ratios seem to be working good. Her body is cooperating. But with work vacation next week comes a change in the daily routine. I have a feeling I'll be making insulin adjustments again very soon...
Monday, July 13, 2009
In the last post, I shared our struggles with Adele's flu last week. She is better now, but it was a long and exhausting week. During our 2nd doctor visit after 5 days of fever, they did all kinds of tests including a test for the Swine flu virus (H1N1). A few days later, the doc gave us a call confirming that the H1N1 virus was the culprit. Every year, Adele's daily Diabetes management is thrown into a whirlwind because of the various viruses that she comes in contact with. This time it was different. This time it had a name: H1N1. This unwelcome guest has since also paid a visit to my wife Michele. At least her sugars have remained stable (she doesn't have Type 1 Diabetes). I'm still healthy so far.
So now Adele and Michele have become H1N1 statistics. They're forever in the record books. I told Adele she was in the paper this weekend. An article stated that 3 new cases of the Swine flu had been confirmed in Moncton and she was one of these people. She still wasn't too impressed.
We needed to completely change our Type 1 gameplan to try and stay on top of the H1N1 virus. After about 2 days of out-of-control blood sugars, Adele's total daily insulin amount was close to 50% more than before the flu. This was necessary in order to keep things in check. It worked for about 5 days after which she started to go low. I knew this would surely happen as soon as her body began winning the battle with the virus. I knew it was going to happen, but I didn't know when. This is a very dangerous time for insulin reactions to occur (very low blood sugars and unconsciousness). We avoided this by keeping a very close eye on Adele's sugars which meant 10 to 15 blood glucose checks a day and 2 or 3 during the night. Last week was also a CGM (Continuous Glucose Monitoring) vacation. This was not by choice but rather because Adele was just too sick and she didn't want to go through the sensor insertion. This was not a bad thing since the sensor she had on when she started to get sick was giving errors because the sugar started shooting up very fast. The sensor seems to have a hard time with rapid glucose fluctuations.
Here are Adele's basal insulin rates that were programmed into her pump before the H1N1 visit:
12 am to 5 am -> 0.25 units of insulin / hour
5 am to 9 am -> 0.5 units of insulin / hour
9 am to 8 pm -> 0.25 units of insulin / hour
8 pm to 12 am -> 0.5 units of insulin / hour
While she was sick (days 3 through 7), her basal insulin rates were:
12 am to 5 am -> 0.4units of insulin / hour
5 am to 9 am -> 0.75 units of insulin / hour
9 am to 8 pm -> 0.4 units of insulin / hour
8 pm to 12 am -> 0.75 units of insulin / hour
Currently, her basal insulin rates are:
12 am to 5 am -> 0.3 units of insulin / hour
5 am to 9 am -> 0.6 units of insulin / hour
9 am to 8 pm -> 0.3 units of insulin / hour
8 pm to 12 am -> 0.6 units of insulin / hour
How did I come up with these? All insulin dosage is determined by trial and error and by looking at how the body reacts to food and insulin. In the beginning it is done with the help of your diabetes healthcare team, but after you get the hang of it, you begin to make changes independantly. Independance is the goal. I currently make all changes myself. For example, if she's waking up low, I'll usually either start the higher basal rate later in the morning (like at 6 am instead of 5 for example) or I could also lower the basal rate itself (from 0.6 units of insulin / hour to 0.5 for example). There is no magic formula that gives you this information. There is no doctor that can tell you the exact number that will work for sure. It's a matter of studying blood glucose variations in relation to the amount of insulin delivered and make changes that you THINK will work and then see if you were correct. I'm not sure how it is for an adult with a routine daily schedule, but for a growing, outgoing 9 year old, these changes are pretty much constant. That is what the Type 1 game is all about...
Monday, July 6, 2009
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...