Happy New Year!

My 2009 resolution is...

http://www.capacadie.com/AcadieNouvelle/2008/12/31/Mike_LeBlanc_376.cfm

Sorry, story is in french only.

Surviving the holidays

On Christmas Eve, after getting home from church fairly late, Adele went to bed without eating her evening snack. Her sugar was 8.1 which is good before bed. But 1 hour later just when I was trying to go to bed she started dropping - 5.3 then 3.4 then 2.8. I gave her like 10 gummies (20 grams of sugar) and had to turn off her pump for close to 2 hours before her sugar started going up again. This meant it was 1 am before I was able to get to sleep. Michele checked her again at 3am and she had gone up to 15.6 - too high. So we needed to correct and went back to sleep, well Michele did, but I tossed and turned until 4:30 when Adele woke up and wanted to go open gifts. We said NO and told her that she needed to wait until at least 6am thinking she would go back to sleep. She didn't sleep after that and neither did I. So, at 6am I was assembling new toys, taking pictures / video and playing video games after a whole 2 hours of sleep. Rough morning, much better in the afternoon after a much needed quick nap before lunch.

Anyway, after this sudden drop in Adele's blood sugars around midnight I didn't make any basal changes since I thought that it was due to her not eating her bedtime snack. But then after going through basically the same thing for the following 4 nights even if she did eat her snack, I'm not so sure that it had anything to do with it. Around midnight her sugar has suddenly begun to drop - she is now very sensitive to insulin at that time which was not the case before. I still have no clue why this is suddenly happening, but I have managed to stabalize things a bit more as of last night. I was even able to go to sleep at 10:30!!

So I think we're good until it changes again in a few days or a few weeks. The Type 1 game is rarely boring...

Merry Christmas

Adele is sooo excited for Christmas this year!! Very exciting times!

Even if everyone usually likes to take a break from it all this time of the year, there is definitely no vacation for us from the Type 1 game. It is actually a stressful time managing Adele's diabetes since the usual daily routine no longer applies. Lots of food served at different times during the day combined with all the excitement often make for fluctuating blood sugar. It is also a time where everyone is preoccupied as well which can sometimes lead to no one noticing signs that Adele's blood sugar is not good.

So the plan for the upcoming days is to relax, test Adele's sugar more often than usual and try to stay on top of things. Hopefully our game plan will work...

How low can you go?

Low blood sugar is a part of the Type 1 Diabetes game. The tighter the control, the more risk there is to go low. Some Type 1 diabetics can feel their lows while others cannot. Adele is somewhere in between. She sometimes feels her lows and sometimes she doesn't. It all depends on what she's doing at that time. She never wakes up when she goes low during the night. For this reason, we get up at least once every single night between 1 and 3 am to check her blood sugar. We want Adele to still be alive come morning.

A few months ago, Adele went quite low (below 1.0). We're still not sure how low she was because her glucose meter can't give an exact reading when blood sugar is below 1.0. The meter just indicates LO. Nothing had ever created immediate fear and panic in me and my wife as much as seeing this on Adele's meter (it has only happened this once). Luckily we managed to get Adele to drink a juice and eat. We caught her just in time and avoided having to give her a Glucagon injection. I still can't see that she was still sitting and talking to her friend with such low blood sugar. Had we not tested her sugar when we did she would have become unconscious and if there would have been no one there to help her, she would have died. Very, very scary part of the Type 1 game.

Insulin is not a cure

What is insulin and why do Type 1 diabetics need to inject it to stay alive?

Our bodies are made up of cells. Each cell requires a constant supply of fuel (sugar) in order to do what it is supposed to do (it's role in the body). Without sugar the cell will die. This "sugar" comes mainly from carbohydrates that we consume. These carbohydrates are converted to sugar by our digestive system and absorbed into our bloodstream. Our blood then carries this sugar to all cells throughout our body.

Once the sugar reaches a cell, insulin is required for the sugar to enter the cell. Insulin is the vehicle that moves sugar from the bloodstream into each and every cell. Without insulin, this sugar cannot enter the cell and simply accumulates in the bloodstream. The starving cell sends out a signal that it needs sugar and the body reacts by dumping even more sugar in the bloodstream. This is the process that causes a Type 1 diabetic's blood sugar to go high. And until there is insulin there to enable the sugar to enter the cell, blood sugar will continue to rise because of this vicious cycle and the cells will continue to starve.

If a Type 1 diabetic injects too much insulin, the sugar from food consumed will be moved into cells very quickly (like if you changed a 2 lane busy road into a 10 lane highway, traffic would move much, much faster). The problem with this is that once all the sugar is gone (no more food in the stomach and all blood sugar absorbed by cells) the cell will be starving because the sugar supply has run out. The body will try it's best to adapt - a limited amount of sugar stored in liver will be released for example, but until more sugar is consumed blood sugar will continue to drop and the cells will continue to starve and could eventually die.

In a non-diabetic these 2 scenarios are avoided because our bodies are very, very efficient at monitoring insulin production and release from the pancreas, sugar absorption into bloodstream and blood sugar levels. For the Type 1 diabetic, not only does the pancreas no longer produce insulin, but all of this monitoring is gone also. Injecting insulin is the easy part of managing Type 1, the challenging part is all of this monitoring that non-diabetics take for granted...

Just shut it off

When managing Type 1 Diabetes you cannot take a break. It's a 24/7 job 365 days a year.

It's on my mind all the time. I think about it when I go to bed and it's the first thing I think about when I wake up. I occasionally wake up in the middle of the night thinking about it. The Type 1 diabetic (or caregiver) must always be aware of where his blood sugar is and where it's going, even throughout the night. Blood sugar values are almost never stable, even if Adele hasn't eaten.

We generally spend 1.5 to 2 hours per day physically doing tasks required to manage Adele's Diabetes. This includes checking blood sugar, calculating carbs consumed and insulin boluses, changing pump infusion sites... If all were equal, I would litterally find parenting so easy if Diabetes went away overnight. I'd probably get stressed and upset over other issues, but I'm just saying that initially it would be SOOOOO easy if it suddenly went away.

It's the only disease that I can think of (I do not have any medical training) where the patient (or caregiver) must decide the dose of medicine to administer. For other drugs, you simply follow what is prescribed on the medication (2 pills per day for example). With Type 1 Diabetes you must consider the quantity of food consumed, the blood sugar before eating and any remaining active insulin. It is never cut and dry.

Flu season continued...

Adele's sugars had been real stable for the past week. She had a runny nose and was fighting a cold on Monday, but it did not affect her sugars. As Adele's cold got better, I started to feel sick. I hate it when I get sick because I just want to rest, relax and try to get as much sleep as possible, but this is not always possible when playing the Type 1 game... I don't want pity, I'm just saying it as it is.

Adele's sugars throughout the day yesterday were really good, then after her bedtime snack she had gone up from 8.3 to 17.3. I knew it wasn't the infusion site since we had just changed it. I corrected conservatively (with a new site like that I often see the insulin being absorbed so well that her sugar drops drastically - not ideal when she's sleeping). That was not the case last night, 1 hour later she had gone up to 18.2, I corrected again. Then 1 hour later, she climbed to 20.9! I corrected again and was quite aggressive. When I checked her before going to bed she was 18.2, at least it was going in the right direction now. Michele got up 1.5 hours later and she was still 17.6, another correction. I got up again at 3 am and she was 12.2, another small correction. So much for a good night's sleep to help get rid of my cold. Adele woke up at 10.2, a bit high.

Why is it with the pump that sugars shoot up very fast like that?

So far today it's been up again to 17.3 and down to 4.2 after almost over-correcting. Just when you think you've got a hold on insulin doses, Diabetes reminds you that hasn't gone away and forces you to go right back to the drawing board... The Type 1 game is rarely boring!

Feel free to leave comments, I'd enjoy some feedback...

The bag

We have a small backpack that contains supplies that we need to manage Adele's Diabetes (her test meter, juice, crackers, Glucagon). This bag which follows Adele wherever she goes contains a Medicalert card that says "This bag contains life-sustaining material and should be returned to it's owner if found".


This past weekend I met Michele and Adele at the mall. They had not quite finished their shopping so we needed to go to one last store before leaving. As we were walking through the mall, Adele saw stuffed animals that she wanted to go see so Michele kept going and we would meet her at Sears once we were done. When we got to Sears, Adele and I could not find Michele. As we were waiting, Adele tells me that she feels low. I take a look at her and notice that she is very pale (sign that she is low, maybe even really low). Now, at that very moment I started to PANIC! We did not have her supplies backpack (Michele had it) and I had nothing to eat whatsoever. Even if I had a credit card (no cash) there may not be enough time to find something to eat and buy close by. She needed sugar NOW! As I was trying to calm myself and figure out how to get her some juice asap, I noticed Michele. Phew, close call!!!

I'm still not sure how low (or even if she was low), but I do know that she had never before felt a low in public like that. She had drank her juice by the time we found a comfortable spot to check her blood sugar (she was 7.4 at that time). Luckily we won this round of the Type 1 game... And the lesson learned was to ALWAYS have "the bag" with Adele. This also made me realize how true the message is on the Medicalert card inside the bag - "life-sustaining" really does mean life-sustaining!

Second-hand Diabetes and gummie bears

I presently have what I call second-hand Type 1 Diabetes. Symptoms include stress, constant worry and sleep deprivation. Unlike Type 1 though, I will outgrow it to a certain extent.

Last night was a site change night. Every 3 days (sometimes less) we need to change Adele's insulin pump infusion site. The small plastic tube inserted under the skin would become blocked and no longer work if we left it there longer than 3 days. It is the body's response to a foreign object in it to try to push it out or separate itself from it by "growing" skin around the object to protect itself. It could also become infected if we left it there longer than 3 days.

For the first 12ish hours after inserting a new infusion site Adele has a tendancy to go low. This is because the infusion of insulin is very efficient in the new skin area. Through trial and error we have determined that a 20% reduction of insulin during this time SHOULD be enough to avoid lows (while not causing highs).

Last night before snack Adele's sugar was 9.9. We corrected, she ate and we reduced the snack bolus by 20%. Just before bed she had climbed up to 13.3, but then 1 hour later she had gone down to 5.9 and was sound asleep. Her snack bolus insulin had not yet peaked and her sugar had dropped by 7.4 in one hour. If I didn't do anything she was going low for sure.

I can't take back any insulin that she has already received, it's too late, so that meant that there was nothing I could do about the bedtime snack insulin. I could however temporarily shut off her pump so she doesn't get any more for the next hour. She already had too much, no sense in giving her more and make things worse. Sometimes shutting off the pump is enough to stop the low, but in this case I knew it wasn't. She had to eat. Adele has developed a reflex while sleeping that if I put a gummie bear in her mouth while she is sleeping that she'll chew and eat it without waking up. It's a tricky game though since it doesn't always work. I managed to give her 5 gummie bears and her sugar had gone up to 10.6 when I went to bed - a bit high so I corrected. At 1:50 am this morning she was 5.2 - a few more gummie bears and pump off for 1 hour. The result was a blood glucose of 7.6 this morning. Very good number to kick off the day for more Type 1 gaming !

And thanks to gummie bears for saving Adele's life !

What does it take?

Adele's sugars have been yoyo-ing a bit for the past days. An insulin dose that was causing her sugar to go low after breakfast earlier was now causing her sugar to shoot up a few days later for no apparent reason.


I have been struggling as of late with our chosen Diabetes management methodoloy. Are we testing Adele's blood sugar too much? How much is too much? There is no right or wrong answer to this, it's a personal thing. But I keep second guessing myself based on various opinions that I read or hear on the subject. I need to be confident in my decision and move forward...

I am pleased today that Adele's sugars are better than earlier in the week. The up and down cycle seems to have stabalized. Adele was low (3.4) this morning when she woke up. She told me she felt low which is good, because usually she doesn't feel her lows. As soon as she told me I felt panicky and gave her a bit of juice right away. I tried to calm down and talk to myself before I confirmed our assumptions with a blood glucose check.

Her sugar started to creep up after breakfast though (10.8 before dropping her off at school) and she would have been high for sure at snack time if I hadn't corrected with 0.6 units of insulin. She was 6.2 before her mid-morning snack and 6.5 before lunch (target is 7.0, so that was a very good). The extra blood glucose checks may be annoying, but it's what it takes to try to keep things in check.

Hopefully our Type 1 gaming luck will continue for the remainer of the week.

Luck?

It is estimated that 40 innocent, genetically disadvantaged children are diagnosed with Type 1 Diabetes each day in the US.

Adele is one of the lucky ones. She has 2 parents that love her very, very much and are commited to giving her the best possible care. We have medical insurance to cover the very expensive cost of her treatment. My job enables me (and my wife) to be on Diabetes call while at work. Because of my work as a computer analyst, I have experience working with numbers. Adele is an only child therefore we can put 100% of our focus on her care (I know families with 2 or more Type 1 children).

But then I often hear of families who do not have all these ressources. What about these Type 1 gamers? How long will they be able to stay in the game?

Lifeline

ALL Type 1 diabetics must inject or infuse insulin to stay alive. Current options are via a syringe (or a pen like needle) or infused using an insulin pump.

Adele was on shots for about 1 1/2 years before getting her pump. The pump has it's benefits and it's drawbacks, but for us we wouldn't go back to shots.



The pump is not an artificial pancreas. It will not automatically back off when blood sugar goes low or automatically give more insulin when blood sugar is high. It gives a very small amount of insulin every 3 minutes. This continuous insulin infusion is called your basal insulin. These basals are programmed in the pump by the user. A 24 hour clock enables you to program specific insulin amounts for the entire day.

Adele's basals are currently: 0.225 units/hour between midnight and 5 am, then 0.475 u/h until 9 am, then 0.225 u/h until 8:30 pm and 0.475 u/h until midnight. How did we come up with these? Through trial and error and with the help of the diabetes nurse.

Every time Adele eats she needs a "shot" of insulin to cover this food. The pump enables us to give her a "shot" of insulin at any time during the day without a needle. This is called a bolus. An infusion site (small flexible plastic tube inserted under the skin) is the doorway through which her body will receive the insulin.

Adele's pump is part of her now. It's an extension of her body since it is worn 24/7.

Tis the season

Last Saturday evening was the Santa Claus parade. The weather was good - no precipitation and around zero degrees. Adele had made plans to meet her friends and was very excited!

Adele's sugar was high before supper 16.3. I gave her 1 unit to bring this down before she ate. Because of the excitement she wasn't very hungry and ended up eating very little for supper. With not much in her stomach and lots of insulin on board was she going to go low later?

We found our spot along Main street about 45 minutes before the parade was about to arrive. I checked Adele's sugar at 6:45 and she had gone down to 7.4. This was good, almost too good since the parade hadn't started yet and we were going to be standing there for over an hour, so I gave her a Fruit to Go and turned off her pump for 1 hour. As soon as we got to the car after the parade, I proceeded to test her sugar again but the meter didn't work because of the cold. I hoped she was good...

After we got home and I managed to warm-up the meter I was able to test her sugar. She was 15.3. The Fruit to Go and pump off for 1 hour was too much. That's how the Type 1 game goes sometimes...

Daily gaming

Here's how we play the Type 1 game on a daily basis...

Wake up @ 6:45 and test Adele's blood sugar. On weekends I need to backoff her morning basal insulin so she won't go low. Insulin basals are programmed in her pump. If she doesn't sleep in, she may wake up with a high blood glucose reading. I will correct right away if she's high by giving her an insulin bolus via her pump. After breakfast, I need to calculate how many grams of carbs she has taken in, do a bit of math and give her insulin via her pump.

If I have recently made changes to her insulin doses, I will test her blood sugar again before dropping her off at school @ 7:50.

Whoever is on call (either me or my wife) will then talk to Adele's teacher's aid again @ 8:45 and then 9:45 before her snack. If her sugars are dropping (or already low) I will tell the teacher's aid to give her a bit to eat. If her sugars are going up (or already high) I will tell the teacher's aid to give her insulin to bring them back down.

2 more blood glucose checks are done @ 10:45 and 11:45 before her lunch. She's checked again after lunch recess and before getting on the bus. In total, we are in contact with the teacher's aid about 8 or 9 times per workday.

We use the total grams of carbs consumed to calculate the amount of insulin that we give Adele each time she eats.

I usually check Adele's blood sugar 2 or 3 times after she is sleeping between 8:30 and 11:00 to give me a better idea of where her sugar is going. I can then make micro-adjustments to try and get a good reading when Michele checks her again between 1 and 2 am.

We use a log book to track blood glucose values and insulin throughout the day. This enables us to make better decisions and enables me to go back and look for tendancies in order to make adjustments.

This log book is from last summer, so the schedule is different from what's described above, but it still gives you an idea of the work required...

Please note that this is our personal management system. Each Type 1 diabetic manages their disease differently. No one approach is better than the next. The diabetic simply needs to find what works best for him/her.

Flu season

Flu season is in full swing. Lots of kids are sneezing and coughing at Adele's daycare and school. Flus and colds almost always affect Adele's blood sugars. They tend to go up!

A mild cold or flu is like losing weeks of work adjusting insulin doses. You basically need to start over. Doses or scales that have been working are no longer enough, but you're not sure how much more insulin is needed to try to keep things in check.

For the past 2 days, Adele's blood glucose levels have shot up dramatically and I'm a bit lost as to how much insulin she needs to get them down again. Although her cold symptoms are minor (if she did not have diabetes, we wouldn't even know her immune system is fighting a cold).

Last night after a low (3.6) at 9 pm, Adele's sugar climbed to 11.5 at 1 am. We corrected with 0.2 units of insulin which would usually be enough. I had a feeling that this time it wasn't sufficient, but since we needed to sleep I wasn't too aggresive. This "feeling" caused me to wake up on my own at 4:30 am. I checked her sugar and she had gone up to 21.5! I gave her 1.1u and she woke up 2 hours later at 5.6.

Hopefully that the insulin scale guesstimates that I'm using today will be enough while not causing her sugars to drop too low...

Highs and Lows

In theory, when you think about it, Type 1 Diabetes management seems quite simple. All you need to do is give the correct amount of insulin for the food (carbohydrates) taken in and the blood sugar levels should stay between 4.0 and 8.0 (in the normal range).

In practice though, this is not the case. Our bodies are very complex. Stress, exercise, hormones or even your immune system fighting a virus will affect blood glucose. Highs and Lows are unavoidable. People often tell me that Adele's diabetes must be really bad since she gets her blood sugar tested many times per day (between 10 and 15+ times), but in reality this is what it takes to try to catch a low before it happens or correct a rising blood sugar before it gets too high.

No Type 1 diabetic is "worse" than another. Their pancreas doesn't produce any insulin.

Numbers

In Canada, blood glucose level is measured in mmol/L. Normal values for blood glucose is between 4.0 mmol/L and 8.0 mmol/L.

Blood glucose less than 4.0 is called hypoglycemia. It is caused by too much insulin (or not enough food/sugar). Hypoglycemia is very dangerous. If the diabetic doesn't get any sugar asap he/she can become unconscious and even die.

Blood glucose greater than 8.0 is called hyperglycemia. It is caused by too little insulin (or too much food/sugar). If not treated, hyperglycemia can lead to ketoacidosis (diabetic coma). Frequent hyperglycemic episodes over time are what cause long term complications such as heart disease, blindness, kidney failure and amputation.

So, life for someone living with Type 1 Diabetes is a 24/7 balancing act between food/sugar and insulin to avoid hypoglycemia and hyperglycemia.

Typing

What's the difference between Type 1 (Juvenile) and Type 2 Diabetes?

Unlike Type 2, Type 1 is not lifestyle related. A person cannot get Type 1 because of a poor diet, lack of exercise or eating too much sugar. Type 1 or Juvenile Diabetes is an autoimmune disorder that cannot be prevented or cured. A person develops Type 1 when their immune system mistakenly attacks the pancreas destroying it's ability to produce insulin. A Type 2 diabetic's pancreas is intact and still produces insulin, but his/her body can't utilize this insulin effectively.

Unlike Type 2, Type 1 cannot be controlled by diet and ALWAYS requires insulin therapy (mulitple daily insulin injections). Insulin is not a cure, it simply keeps the Type 1 diabetic alive by delaying complications.

Type 1 Diabetes cannot be outgrown. It's a life sentence.

Purpose

The purpose of this blog is to educate people about what it's like to live with Type 1 Diabetes. My daughter Adèle was diagnosed with Type 1 when she was 2 years old. She is now 8. All posts will explain the day-to-day adventures that we go through as a family to enable Adèle to stay alive.

Mike LeBlanc (Adèle's dad)