Teen Diabetes Logic

"Before you go upstairs bring me in your meter."
"Well you see Mom, I've got some good news and some bad news for you."
"What do you mean?"
"Well you see there is good news and bad news.  The good news is that I have to do all my tests for the rest of the week! See, isn't that great news?"
"Huh? What is the bad news?"
"Well you see I am going to have to do all of my tests for the rest of the week because I missed a few tests today at school."

Back up the banana boat here! We have negotiated testing down to basically three tests per school day.  This is nowhere near my ideal but it works for him and is more than a reasonable request from me.  He must test as soon as he gets to school or at their first break.  This is about two hours or a little less after he eats his breakfast.  He is then to test before he eats his lunch--he is always to test before food hits his lips so how is this test ever missed? I don't know.  The final test is two hours after lunch or just before he gets on the bus.  Because of scheduling the two final time slots are basically the same.  We have a three strikes rule--miss three tests and you lose a privilege. If he has already missed two tests and he only had to test three times during the day....

"Did you test at all today???? Let me see that meter. What the heck is going on?" My mind was still reeling from trying to unravel his logic and what I was coming up with did not look good.

"I told you Mom, I have to test for the rest of the week but see I tested at 3 and I did test at 1.  I was pretty high then but we really don't know why because I kinda missed the morning test and the before lunch test but you see I do have to do all of my tests for the rest of the week.  That's a good thing."

THUD! Yes, that was the sound of my head hitting my desk in frustration. If only he could check his blood sugar levels as well as he rattled on with excuses and teen logic.

Sleepless with Diabetes

Diabetes has lived in my house for more than 11 years and 8 months.  During that time (and for a number of years before), I have never slept through the night. I wake up at least once but more often multiple times through the night each and everyone of those nights. whether my son is at home or not.
Each time that I wake up I run through a gamut of emotions... Holy crap! What's wrong? Do I need to test? Is there something going on that I am missing? Should I get up? What time is it? I must need to test!
As well as... do you have any idea what time it is? You went to sleep less than an hour ago! Are you insane? Get some sleep! He just tested before he went to bed and that was only 20 minutes ago.  Roll over.  Sleep for another hour or two maximum and then test him.  At that point it will be okay.  He is alright. Close your eyes and shut down your mind. Enjoy the break!
Are you serious? What if he is low and I missed it? What if????
Go to sleep.
At that point, I will usually sleep for another hour or so and then am woke up by much of the same dialogue and mounting anxiety.  This time it is more of a "get your butt out of bed.  You wanted to be woken up, you were, now deal with it!". 
I crawl out of my warm bed because I know that I will stress myself if I stay there any longer. I stumble into my son's room, wonder where the light is and then pause as I watch his bed.  Just as I did when my boys were sleeping in their cribs, I watch.  I hold my breath until I see his chest rise or hear him snore. If he rolls over as I walk in the door, my heart is set at ease...until I test him.
No matter what the result is though, I do have some peace.  My son is alive.  He is okay.  Diabetes did not win.  I am doing my job. We will make it through another night...I think.

For some reason, the past few nights when I have woke for the fifth time in four hours, I have ached for the too many other parents who were doing the same thing.  I have been grateful for the parents who do not have this experience.  I have longed for the day when I don't have to wake and worry...whether my son is with me or not.  I longed for the day when it is safe for him to sleep...as well as me.

More noises from Charlie Brown's Teacher

When my son came home from school, I reminded him that I wanted to look at his pump and meter later that evening.  I asked him if he knew of any trouble spots that I should be concerned with. He said that he had been high after breakfast but felt that that was probably because of a bolus error. Everything sounded good...until I checked the meter and the pump.

I looked at the meter first. There was a 5pm test and a 1pm test.  Okay, what happened to the 2:30-3pm test? There was the high from breakfast, and the tests from the previous day but wait, we were missing a few more tests.  There were almost as many missing readings as there were readings. This was not good.

As I thought about the after breakfast high, I began to wonder..."Let me see your pump."

"Are you going to make some changes?"

"Just let me see your pump.  Yeah, I thought so."

"What?"

"Well, you came home after school went straight to the fridge.  I asked you if you had tested and you said that of course you had but your meter says that you didn't. I see that you didn't bolus your lunch until 1:30pm. Since you are in class at that point and a missed meal bolus alarm went off, I am guessing that you forgot to bolus your lunch.  When I checked for a breakfast bolus, which I remember asking you not once but twice this morning if you had done it, guess what I saw? No bolus again!!! You seem to be forgetting an awful lot lately.  Are we going to have to go back to you testing and bolusing in front of me as well as texting me all of your readings from school? Will I have to demand your meter the second you walk in the door from school?"

"I can't believe this.  I must have remembered to bolus. I can't believe I forgot to test.  Let me see. There has to be some mistake!"

I handed him the pump and told him the only mistake was his in forgetting most of his care. He had only bolused for one meal that day and that was the meal that I bolused. Things would change I reminded him as I walked out of his room.

Outside, I wanted to bang my head against a wall. Oy!! We really do make one leap forward and six shuffles back.  Teens really do have minds of sieves.  Its back to observing and not just reminding. Its hoping that one day some of what I say will sink in and mean something. One day I hope my voice will be more than the squawking sound of Charlie Brown's teacher.

My take on the Artificial Pancreas Project

The other night we sat in on a lecture about the Artificial Pancreas Project.  In all honesty, I have paid very little attention to this project. I heard the hub-bub when the JDRF announced that they were funding research that was not cure based.  I have seen the online petitions asking for the FDA to move the project along a lot faster. Other than that I have been fundamentally ignorant.

I have however slowly worked to educate myself whenever possible.  I had many concerns about the project and looked forward to learning and seeing if my fears were founded. Sadly I think that they are.

Dr's. Anhalt and Krishna (his first name but his last name is far too long and complex for me) explained that the project had many levels.  They were working on simply suspending insulin during a low and ultimately reaching the point where they could truly close the loop.  Their main focus at the moment was to see a viable product on the market sooner rather than later (within 4-7 years).  The bringing together of glucometers, CGM, insulin pump technology and human intelligence was a huge obstacle.  These things work fabulously apart but bringing them together brought many new issues. To make matters more complex, regulatory bodies have never before been asked to rule on the safety of medical devices that make decisions like this one will.

For me, one of the obstacles to an Artificial Pancreas as I envisioned it was the number of sites and devices that one had to carry and use.  I asked how this was to be handled.  They stated that it was a real challenge. You cannot get down to only one site (which my son would want) because you cannot deliver insulin and measure glucose levels in the same area. They would work towards one device but felt that the loop may never truly be closed.  It was also stated that artificial intelligence would not be put into the system in the foreseeable future. 

Another issue is in the fact that sensors lag behind in what they say the blood glucose level is.  Insulin lags behind in its action time.  There is no way, at the moment to get immediate results to immediate problems. We need more accurate and timely sensors as well as faster insulins. To date there is only predictions and educated guesses.  This is very concerning to me. 

Larry voiced his concerns as well. At the moment we are talking about devices "talking" to one another.  We have so many devices that we use on a regular basis, how could we be guarenteed that they would not interfere with one another? He wondered how my son could sit in his room with his cell phone, his laptop, his XBox head set, his pump, and his CGM and not have any of it interfere with each other.  We were told that this was a real concern.  At the moment they were working to secure specific radio frequencies to ensure that there would be no interference but we still had worries.

My final concern, and the concern of many others in the room was cost.  This is a huge project.  The actual dollar figures were not available but we all knew that it was way more than what we had in our pockets. Some of the cost of the project will most likely have to be recouped in sales at a later date. Would the Artificial Pancreas then be out of reach to those who need it most? 

We were assured that the JDRF in the US was working with insurance companies so that when the product did come to market, they would cover the device.  This does not help those of us in Canada.  Our system works differently and while it is important that private insurance companies are onside with this device, it is even more important that provinces recognize its value.  Who will be working on that angle? Currently we are asking our governments to cover the pieces--pumps, glucometers, CGMs and supplies.  Will they cover the Artificial Pancreas when it comes to market? We can hope.

While there are many issues to be overcome, the project does have some positive points as well.  Moving forward with sensor technology will hopefully provide us with more and better data on blood glucose trends. This data can be used to keep A1c's down and reduce the chance of complications.  These same sensors can ideally act as our watchdogs at night.  They can wake our children or ourselves when a blood glucose level is rising or dropping to a dangerous level. That is one thing that would help this mother sleep a lot easier at night. Now to just convince my son that this would be a far better system than him building me a room in his house!

Dear Government

Those of us in the Diabetes Community are quite well aware that November is Diabetes Awareness Month. For years, I have found something new and unique to do each year.  I have sent out general information letters to everyone I could think of, I created a book of the faces of diabetes with real people and their real stories, I have gotten a tattoo, and much more.  This year I decided that November was the perfect time to get back to a focus that is very dear to my heart--advocating for increased access to devices and supplies for people with diabetes.

November is a great time to do this because of course its Diabetes Awareness Month, but it is also the month after our new government formed and a time when they are beginning to plan for the spring budget.  I wanted politicians in my province to be thinking diabetes before they sat down to spend my money.  The following is the letter that I will be sending out to all Members of the House of Assembly.  If you live Newfoundland and Labrador, I would ask that you copy this letter and send it to the Minister of Health, the Finance Minister and your MHA (if you have a newly elected MHA, their contact can be found on their party websites).  I would then ask that you copy it and send it to your friends and have them do the same.  Public pressure works and we need to change this program. If you don't live in Newfoundland and Labrador, please feel free to copy this letter and tailor it to your own needs. While a cure is ideal, until it is found our loved ones deserve access to the best equipment out there to keep them alive!

November is Diabetes Awareness Month.  There are now almost 3 million Canadians living with diabetes.  Approximately 10% of those are living with Type 1 diabetes, an autoimmune disease that attacks the insulin producing cells of the body leaving the victim reliant on an external source of insulin to live.  A person without insulin is like a car without gas, their bodies cannot function and they will die.

In Newfoundland and Labrador, people living with Type 1 diabetes currently are able to receive their insulin through the best available delivery system—an insulin pump.  This small life sustaining unit allows the user to pre-program their insulin needs into a computer which will then delivers the insulin to its user at specific, minute amounts throughout the day and with meals or to combat high blood sugar levels.  When a person with Type 1 diabetes reaches 25 in this province, they must either have the financial resources to pay the extra $5500 per year for an insulin pump and supplies or go back to a less reliable method of insulin delivery through injections. We hope that soon the government of Newfoundland and Labrador will see fit to change this and join Ontario in extending its pump program coverage to all of their residents with Type 1 diabetes who do not have private health insurance regardless of age.

Despite the advances in technology and the availability of insulin pump therapy to manage Type 1 diabetes, on November 2, 2011 the American Juvenile Diabetes Research Foundation publicly noted that one in twenty people living with Type 1 diabetes will die because of a low blood glucose level (this occurs when there is too much insulin in their body and not enough sugar).  This number is unacceptable.  In a technologically advanced society such as ours it is also unnecessary.  Beyond the incredible emotional strain that this threat puts on families and people living with diabetes, such a high mortality rate also has a large financial impact in provinces such as Newfoundland and Labrador which have exceptionally high incidences of this disease. 

This number can be changed.  A cure is the most glaring way to “fix” this problem.  A cure would eliminate the need for government funding of insulin pumps and subsequent spending on diabetes related complications.  Many great organizations throughout the world, including the Diabetes Research Institute work solely on this mandate. 

Until a cure is found, another way to reduce the number of low blood glucose related deaths is to provide real access to the technology that is available which would protect all people living with diabetes.  Recent advances in pump technology offer suspended insulin delivery when a person is already low and non-responsive as well as Continuous Glucose Monitors (CGM) which “speak” to the insulin pump.  A CGM is a computerized device worn by a person with Type 1 diabetes that monitors the trends in blood glucose levels. It tells its user when they are in danger of having their blood glucose rise or fall.  These predictions help to maintain a stable blood glucose level which reduces long term complications. The alarms also help to ward off dangerous lows that will render the person with Type 1 Diabetes unresponsive or dead.

According to a 2009 Canadian Diabetes Association report on the economic costs of diabetes in Canada, the indirect cost of diabetes related illnesses and death was approximately $8 million in 2010 and another $3.1 million in direct cost. Those living with Type 1 diabetes are responsible for 40% of these costs. The funding of insulin pumps and continuous glucose monitoring can dramatically reduce this economic burden. Insulin pumps have been shown to significantly reduce hospital visits by people with diabetes. 

As November is Diabetes Awareness month, I would invite this government to learn the facts about Type 1 diabetes.   This is a silent killer that is claiming one in twenty people as its victims on a regular basis (after drafting this letter we learned of yet another young person who died because of hypoglycemia during the night of November 9^th). This number can be changed. It has to be changed.

With proper tools, education and awareness, people of all ages with Type 1 diabetes can live to be productive healthy members of our society. I would ask that you review the provincial insulin pump program and look to expand coverage to cover all people who live with Type 1 diabetes who do not have private insurance for both insulin pumps and continuous glucose monitors regardless of their age.

Sincerely;

Barb Wagstaff

(mother to a 14 year old with Type 1 diabetes, diagnosed March 2000 age 2)

Warm beds and Dead sites

Do you know those moments when you are half asleep and you cuddle right into your partner? All is right with the world. Its warm and safe.  Life is good...and then you realize that you have a child with diabetes who needs to be tested.  You fly out of your loved one's arms and hurry to get to your child's room. 

Yes, that has happened in our house...on a number of occasions. Last night I jumped away from Larry and raced out of the room. It was 4:30am and I had not woken at 3! I stumbled into my son's room and was out of sorts for a second. We had moved his furniture around the day before and he wasn't where he was supposed to be. Once I woke enough to remember the new layout of the room, I turned on his lamp, grabbed his meter and got ready to test him.

He mumbled something and I assumed he was talking in his sleep. He mumbled something again and then showed me a piece of white mush.  It was his site. He had rolled over when I came in and the site fell out.  Crap! I had to be a lot more awake for this.  I handed him the meter to test while I found the supplies for a site change.  I was pleased to see that he was only 9(160) when we tested but feared what the failed site would bring in a few hours.

Together we changed the site.  When all was said and done, my son rolled over to instantly fall back to sleep .  I stumbled back to my room in hopes of getting back to the spot where I should have been. As I crawled into bed, I felt bad for Larry and very grateful for his presence.  He had no idea what he was getting into when he became involved with a mother of a child with diabetes.  He didn't know about the crazy hours until he started living with it.  He didn't know that many times his snuggling into me would wake me at an opportune time to test my son when I would have otherwise continued to sleep. I am sure he grumbles as he goes to cuddle into me and my body slips away to another room leaving him with nothing but a warm pillow. 

On the other hand, I am very grateful for this.  This is yet another occasion when his cuddling has allowed me to catch a problem before it became dangerous.  My son seems to quickly elevate to ketones and vomiting lately with high blood glucose levels.  The 1 in 20 statistic has deepened my fear of nighttime lows.  With my second guardian angel around to help me wake at night we will beat this thing and keep my son healthy!

One in Twenty

Recently the JDRF in the US took out an ad in the New York Times and elsewhere that has generated a lot of talk amongst people living with type 1 diabetes.  It simply stated that 1 in 20 people with type 1 diabetes will die because of hypoglycemia. It was geared to speed up FDA approval on the Artificial Pancreas Project.  

The fact that people die because of hypoglycemia is not disputed.  Those who have diabetes living in their house are well aware of its dangers.  We remind our loved ones to test and be in range before driving anything from a bicycle to a motor vehicle.  We wake up multiple times throughout the night to test and make sure that our loved ones are safe. We know that diabetes is a deadly disease.

Many were shocked at the figure however--1 in 20.  Many of us have hundreds of friends with diabetes listed on Facebook.  A quick scan would mean that five of every one hundred people we know will die of hypoglycemia.  That is terrifying. It brings the worry and the desire for a cure and better treatments to a whole new level.

Is that a bad thing? Jessica Apple discussed this in her recent post.  She suggested that November not be a time of feeling good and turning things blue but asking for change to save lives.  Over the years I have taken this same approach--take no prisoners and show the down side.  Yes my son can do everything his brother can but.... and its the but that should not be there. Its the but that allows him to live. Its the "but" that we need to change.

Its a fine line however in giving your child hope and showing the world the darkness. I like the power of the JDRF ad but fear my son seeing it. While I present the dark to politician and the general public, we focus on the positives at home.  

As a parent though, when I stop, personalize the statistic and think of 20 children with Type1 diabetes including my son  and then realize that any one of them including my son will die of hypoglycemia? I just can't go there. I cannot spend more than a second on the thought. It makes me ill and shakes me to the core. My heart is crushed and I am terrified. Maybe that is not the worst thing either.

That fear motivates me to work harder.  It makes me want to spread information to a larger audience. It makes me want to focus more on ensuring access to things like pump therapy and a CGM for my son and the 19 other children (of all ages) whose lives could be saved by better technology.  It also makes me want to take a harder look at the work of the DRI and other groups who claim to be working for a cure. 

One in twenty people living with Type 1 diabetes will die because of hypoglycemia.  That stark number needs to change. We can work to prevent this. We can work to "fix it".  As a parent, I cannot fix my son's body and take diabetes away from him but I can work to fix a system that keeps lifesaving tools just out of reach.

This disease is serious.  We need to be equally serious about keeping out loved ones alive and providing everyone with access to the tools to do so. We would not deny someone who could not walk a wheelchair.  We cannot deny someone who cannot produce insulin the tools to deliver and monitor this lifesustaining liquid.