dead in bed.

I'll admit I'd never heard about the "dead in bed" syndrome until a coupled days ago when a 13 year old girl with Type 1 diabetes went to sleep with a good blood sugar, in great overall health, and never woke up.

I will make no attempt to understand what the parents of this girl must be going through. I have myself watched my daughter's life flicker and come to within seconds of ending in my arms... is an image that I will never be at peace with. To actually have your child torn from you without an explanation, a cause, or a reason is unimaginable. Once again, diabetes gets off without a mark on it....dead in bed syndrome has no official cause but is responsible for 20-60 deaths per year or the equivalent of 6% of all deaths in type 1 diabetics under the age of 40 years old.

6% of type 1's die for no known reason. The assumption is that overnight hypoglycemia is to blame. But not diabetes, amazing. This was not the fault of anyone's, certainly not the parents, they did exactly what they should have...it's just one of those things...except that it's a young life ended shortly and without closure. I pray for their family that they can be a peace with this tragedy.

Over the last few weeks, out of a sheer desire for a full night's sleep, I have skipped Cadence's 2am blood test a couple times....3 years of an alarm at 2am 7 days a week, I needed a bit of break. To read this horrific news reaffirms that we need to be vigilant about our kid's blood sugars. Their life literally depends on our diligence both in the short term (dead in bed) and the long term complications. We also need to galvanize our efforts as warriors against this disease, educate, fundraise, lobby for a remedy. Just this morning a huge segment on our local news channel about the rising costs and complications of "diabetes" without identifying the types! It was from the Canadian Diabetes Association which is almost entirely type 2 focused, talking about prevention of long term outcomes and the cost of 2 billion dollars a year to the province. What they did not mention was that the Province of Alberta doesn't cover a DIME of type 1 prevention costs, insulin, test strips, syringes, insulin pumps. People who can't afford to protect their children, have no other option but to choose conservation of test strips, re-use a syringes, squeeze another few weeks out of that vial of insulin. It's not right and has significant consequences.

Teach people at every opportunity that Diabetes is multifaceted and needs the attention of citizens, our elected officials, the change needs to come, come swiftly, and be significant in order to prevent another young life ended without a reason.

Learn on November 14th for World Diabetes Day.

b.

A Little Slice of Peace

One thing that most parents of a diabetic fear is the night. Most parents put their kids to bed, sink into the couch and enjoy the time of no-kidness for a few hours. If you're a parent of a toddler diabetic...you play the "what would a pancreas do?". Bedtime, blood check, DECISON = snack, basal, or bolus and what's going to be best while she's unconscious for the next 8 hours. Lots of decisions to make.

For the last 3.5 years, I have set my alarm clock 7 days a week for 2am. I get up, walk down the hall to Cadence's bed, slowly creep in, pull back the covers to find her feet, lance her toe, squint to see the blood drop in the dark (c'mon testing light!!), see the number and decide what to do - DECISION - bolus, basal temp, wake to juice. Then I go back to bed, close my eyes...debate my decision...stay up for another 45 minutes because now I'm awake, made some mental calculations, started the mental machinery...and I get up at 5:30am for week absolutely trashed. I carry my luggage under my eyes :-) . Have I snuck a full night's sleep in here and there? Maybe once or twice. Usually what happens is I wake up to my alarm, decide not to bother, then lay there for 45 minutes thinking about checking her...then finally get up to do so, stay awake for another 45 minutes...rinse and repeat. LOL it's a never ending cycle of self-fail.

So last night, Cadence, for the first time that I can remember climbed into our bed at 10:30pm and stayed there. Normally this is a habit your don't want your kid to get into but strangely, this morning I'm kind of happy that it did. I still checked her at 2am but she was all curled up right beside me (makes me smile to think about it). The best part was that she was right there, I could hear her, know she's all good and I fell right back to sleep. At 5:30am this morning I had this funny feeling....oh yeah it was rest including piece of mind.

Weird.

Hailey has herself all around diabetes as well, she's been watching and learning for her 14 months of existence. Without the ability to say hi, she now knows the steps to checking blood sugar and gets mad when she's cant do her own everytime Cadence reluctantly has her blood tested - Oh the irony!

b.

Hormone Discrimination

Choose your injectable hormone wisely as it may be discriminated against.

I say that sort of tongue and cheek but it does directly stem from an interesting conversation that I had with the officials from the Calgary Public School system. As Cadence is getting older, she is starting to understand more about her disease and the role that it plays in her life. She is also asking alot more "why" type questions. These are great though, she knows exactly why she needs to have insulin. Being 3 years old, Cadence is getting to the age of going to school. An exciting, yet terrifying destination for us as parents as it will be the first time that we have to loosen our grip on her diabetes. In advance of the day, I wanted to find out more about how diabetics are handled inside of the school system and was quite surprised at the answers...or lack there of that I was provided.

I asked what the policy on diabetics in school is, to which I was told that there wasn't one. I then asked the simple question of whether or not someone in the school would be able to do a simple blood test with Cadence. She's 3 years old and can do it herself, but if someone in the school could supervise it and give her some insulin through her pump, that would be great. I was given the response "our teachers are not trained to do procedures, so no that would not be a possibility, but they will provide juice if required." I retorted "but how would they know if she needed juice without a blood sugar?" and was again hit with "our teachers are not trained to do procedures."

The conversation was stalling at this point so I tried to angle it a little differently. I said "okay, so if a teacher were willing to learn, based on my instructions to do a blood test and deliver insulin based on my direction, would that be okay?" Again, I was given the "our teachers are not trained to do procedures line.".

My frustration is growing a bit here, I can completely see their point on the issue: blood, DECISIONS, and most of all LIABILITY. So I asked my question a different way. "Alright, so if you have a child with a severe peanut allergy that eats a peanut butter sandwich because they're hungry, how would that child get an epi-pen or epinephrine injection?" I received this puzzler:
"All of our teachers are trained to use an epi-pen to an allergic child"....sounds like a procedure to inject a hormone doesn't it.

Giving juice to a diabetic is the same as giving a kid with a peanut allergy a peanut butter sandwich because they're hungry. The difference is how your chosen life-saving hormone is classified.

I asked them, what's the difference if the two are just injectable hormones? If Cadence did her own bood test and she required a set pre-set bolus of insulin...what would be the difference between an epi-pen and an insulin pen?

There was some dead air on the phone for a minute...and then...."our teachers are not trained to do procedures, as I've mentioned before, but let me give you the Principles number."

What's your school's policy on Diabetes?

B.

DIRONY

No, I didn't misspell the title, it is exactly that. The heart of diabetes is it's own irony. It's a disease of paradox, where everything that should be normal is in fact exactly the opposite of. There are so many ways and reasons to hate it, but sometime you just have to admire and laugh at how clever this foe actually is. It's a brilliantly designed disease. Attacks one specific cell among the millions in your body and produces system effects. It will never be held responsible, but will end a life. Takes the simple pleasures of life and changes them to stresses. It not only affects the host but everyone around them. It truly is a magnificently designed enemy.

The irony of diabetes is especially present in kids, it wages war on the behavioural, the social, the economic, and not to mention the physical. It seems that many things that are the saving grace of parenting and being a kid are the most dangerous in a diabetic kid. Confused? Here's some examples to prove my point.

If your 3 year old has a temper tantrum, most parents would let them hash it out until they settle. With diabetic parents...we have to do that and then treat with a juice or candy since all the thrashing around causes a low. We have to reward the tantrum. Awesome.

Diabetes 1 - Parenting 0.

If you are preparing a nice family meal for you kids and one of them decides not to eat? Most parents would say "no problem, but there's no food later." If you've injected your 3 year old with a pile of insulin in this case however..."okay, let's have a bunch of candy then since you're likely to go into a coma in a couple hours if you don't eat". Reward not eating with sweets. Excellent message.

Diabetes 2 - Parenting 0.

With normal families, if your kid wants to play with friends, you find no other better stress reliever than to watch your child's endless energy expended with other kids'. In a diabetic family....you stress about how much Insulin is on board, did she have enough carbs to buffer it....did I bring enough candy to get her out of the impending low?

Diabetes 3 - Parenting 0.

In a diabetic family, there's not many more uncertain things than a night's sleep. You can't sleep while worrying that you might sleep through a scheduled blood check, miss a low and your 3 year old getting in trouble. You end up getting up anyway, check the sugar and make a decision if you can sleep for another 4 hours or not.

Diabetes 4 - Parenting 0.

So many examples of how a little thing like a pancreas can take "normal" and turn it on it's head. It's not an entirely one sided battle however.

If diabetes has the upper hand one day however, and is letting the blood sugar go high....you as a parent take great sorrow in the fact that you have to put a needle into your child for the 4 thousandth time...however there is an unspoken guilty pleasure in the fact you get to fight the disease with a sharp object. Take that Diabetes!...take that!

Diabetes 4 - Parenting 4000 and counting. WIN!! ;-)

b.

A view from the inside

We often have to remind ourselves about the little girl in the diabetic. One of my greatest fears is the regret that her childhood is less memorable than her A1C's...I must not make the mistake of raising my diabetic instead of my daughter. Too often we look at her blood sugar before we look in her eyes.

Last weekend Cadence went to a birthday party, at which she met a father of one of the kids who is also a diabetic and an insulin pumper. I've talked to Cadence alot about her pump, her "special button" (infusion site), and all about how it's pretty cool that she has one. Ending soon, are the days when she can view her disease as an advantage. I hope she adopts the mindset of opportunity vs. misfortune. The man who she met showed Cadence his insulin pump and her eyes lit up. She was almost amazed that someone else had one. It was a connection that she's not made yet in her life, an instant kinship with another person. The ability to communicate with them empathically vs. being communicated to sympathetically about diabetes. It was an extremely important moment for her and while I am so happy she had the chance, part of me feels robbed that I'll never be able to connect with her that way. We'll have a plethora of incredible moments as father and daughter of course...but the single most important aspect of her life and longevity, that Nic and I for the last 3 years have managed around the clock...is never something we'll truly understand, and she'll never being able to truly share with us what she feels. I don't wish to have Diabetes...but I do wish I knew what it was like so that I can be there for her in more ways than the guy with the sharp stuff.

So, they talked for a few minutes and she asked him if he cries for "special buttons", to which he says "no... I don't cry, but sometimes they hurt, and sometimes the don't."

Cadence just said "Yep". That was the expanse of the interaction... but it completely changed her diabetic experience. Perhaps she now knows that there are others out there.

We interviewed a nanny last night for the girls as Nic really wants to get back to work. The nanny, is also a type 1 diabetic. We look at this in two ways, one we feel very slight some reservation about the remote possibility of her having an insulin reaction while in the care of our kids....in the other sense what an advantage for the care of Cadence. Someone with an understanding of what it's like. The nanny showed Cadence her insulin pen and blood checker, to which Cadence again had an instant connection.

For the last 3 years, we've tried to make Cadence's condition as anonymous as possible, try to make her feel as normal as we can. Perhaps however, we haven't defined normal properly. Perhaps more exposure and more frequent interactions with diabetics is what she needs in order to frame her world as normal. Perhaps our vision for her, is incompatible for her? I wish I could see the view from her eyes, so that we can make the best decisions possible...perhaps that is however, the crux of parenting.

b.

The State of the Diabetes Union

I had a fantastic evening last night at the JDRF research symposium in Calgary last night. Good presentations, sensational families. It was great to meet like-minded folks. It's amazing that when we, as diabetes people, always seem surprised when we meet someone in the wild with a similar story. Instant kinship. It kind of reminded me of the dog park, where everyone has something in common and the thirst to say hello and find out about this other human being is insatiable.

I have to say, amid all the research and fundraising talk, there was one presentation that blew the room away. Colton, at the age of 11 controlled the pin-drop. He is the youth ambassador for the JDRF walk to cure diabetes. He gave a 4 minute monologue of why the walk is important for him, being a type1 diabetic. It was, in my opinion, the centrepiece of the evening for generating fundraising interest. Great job Colton!

The research presentations, as mentioned before were overall very good. The JDRF has embraced the idea of investing in people. I thought the bridge financing idea for companies with unique therapy ideas is revolutionary. Level the playing field a bit for research and treatment to succeed or fail based on it's efficacy and less on the financial burden of approval. I also thought the diversity of funding focus a breath of fresh air. The JDRF seems to be a growing snowball, the energy and passion in the room last night was palpable.

The CGM talk...well...seemed planted by the national sponsor to be honest. The data/research presented was outdated, the technology has not progressed in any significant fashion in the last 5 years, nor have the devices to monitor it. The distinction needs to be made that the CGM does NOT measure blood sugar, even though the presenter last night said it did measure "blood glucose". I think CGM is a vital key in the future of Diabetes care, but a couple of breakthroughs need to take place, including a way to directly measure blood sugar...not a calibrated algorithm of intertstitial fluid. For young kids, stable blood sugars are a luxury, the requirement for stable blood sugars in order to calibrate the CGM defeats the very purpose that parents want to use the thing. We wait for a better solution. Secondly, the marry of an infusion site and a CGM site into one unit is crucial for widespread adoption of the technology. Getting around this problem is going to also be a tough one in that the sites themselves will be difficult to produce in a cost effective manner. To explain further, a CGM site is approximately 40.00 per use. An infusion site is approximately 35.00 per use. So you're talking about doubling the cost of one infusion site, plus the fact that you can't guarantee or predict that both the CGM sensor and the cannula will have the same life cycle. At any one point, you will either be without CGM or good infusion. Either requires a site change, again worth 75.00 dolllars or more. I'm having trouble seeing how this is going to work for people but remain full of hope that the technology will progress sooner than later.

The presentation on the Edmonton protocol research was also quite good. They are making significant improvements in the life span of the implanted islet cells and reducing the complication rate of the immune suppression therapy. The overall success rate is improving but still not at a rate to make the procedure appropriate for the masses. I tweeted a question last night regarding whether or not a diabetic, if faced with the decision, would choose insulin or lifelong immune suppressant medication? The response was 100% insulin. Therein lies the elephant in the room. What research is being done to overcome the fundamental problem in type 1 diabetes? What is being done to try and overcome a diabetic's biologic intolerance for their own pancreatic islet cells? Dr. Senior has shown that the therapy works, upon implantation insulin is produced, but it's a matter of time before the cells are killed off. My personal opinion is that gene therapy will be the answer but that's a long way off from a marketable solution. Dr. Senior and his team have dramatically changed the way people look at a cure however and their efforts need to be STRONGLY supported.

If there was ever an opportunity to support the position that now is a great time to diabetic (if you have to be diabetic of course). I hope everyone that reads this post makes an effort to support a team in the JDRF walk to cure diabetes.

Oprah on diabetes

I have to say, I love Oprah. I would be lying if I said I've never seen it, but the episodes I've caught, her energy and ability to connect is unparalleled. I always think about that scene in Oceans 13 where George Clooney is caught by Brad Pitt drinking a bottle of wine, alone, watching Oprah with a hint of tears in his eyes. In Pitt's attempts to rob Clooney's manhood from him...he gets caught up in the episode and his eyes well up. Great scene and so true.

A subject near and dear to my heart is of course Diabetes. You can imagine the excitement about someone like Oprah taking on the disease and making it relevant to the masses. She had her usual panel of energetic non-doctor doctors...meaning the ones that remove the white coat and connect with people (imagine that). They focused on the sensational and horrifying aspects of lack of control, showing amputations and other stuff, naming diabetes as the "silent killer". Okay, cool now everyone's attention has been focused....

Now I have to disclaim that I am absolutely in the minority of the populous by being type 1 diabetes centric. I manage one on a day-day and night-night basis. 90% of the diabetics out there are type 2. So of course mainstream media will try to communicate with a 90% market share vs. a 10%. That's just good business. Oprah's show is a business, with all of the philanthropy and connection that she brings, it's a business that makes money, freaking gobs of money. Type 2 diabetes will be the single largest financial burden on the planet (not just the health care system) in history, and that means that smart companies will be seeking ways to capitalize on it, we can only hope with good intentions. The most motivated customer is someone that has something to lose, exponential motivation when a life is on the line.

I wanted Oprah to clarify in the episode that:

- Kids get type 1 diabetes without any opportunity to stop it. Their own body (pancreatic islet cells) fails them.
- Adults get type 2 diabetes having ignored 15-20 years of preventable lifestyle habits. They failed their body. (in most cases anyway)

I'm asked on occasion, which means it's thought even more that between the ages of 0-8 months, we fed Cadence too much sugar and therefore she got "Diabetes" at 8 months old. It's not the fault of the person asking, it's just that the delineation between the two types is not made clearly enough, even by our own advocacy groups. The greatest disservice to type 1 diabetics was that we didn't get a cool and unique disease name...like "pancreatic insufficiency" or "islet apathy" LOL, I like that one.

Oprah and Dr. Oz, in my opinion, covered Type2 diabetes very well but didn't seperate the types properly, but the message of the show was a good one, and that is prevention is the key to save lives and lightening the immense impending health care system pressure from diabetes in general. When they talked about "warning signs" one of the top 5 was neuropathies, which are typically a late stage complication. What was left off the list was these 3 things (for type 2's):

1. Poor dietary habits - everyone who eats a big mac knows they shouldn't.
2. Poor/lack of exercise
3. Overweight.

How do those get left off the list?? The three silent but OBVIOUS symptoms aren't talked about??

I also wanted her to clarify that a 2 year old with 65-75 years of Type 1 diabetes expense, as much as 1000.00/month, may be as expensive to the system as type 2 diabetes. I don't know if someone has looked at the numbers but I bet it's close, but it wasn't touched upon. Dr. Oz said, with type 1 there's nothing you can do to prevent it, but there's alot of treatments for it....he should have said but why aren't these preventative measures funded and supported? Only outcomes, PREDICTABLE, expensive, and inevitable outcomes from the disease are funded and supported.

From a health care system standpoint, there has not be a death recorded from diabetes since the mid-70's. It was taken off of the list of possibe causes of death. Diabetes doesn't kill people, the complications of the disease do. Want to know the local irony of that policy? Preventative measures for type 1 diabetes (needles, pumps, insulin, test strips) are NOT covered in our health care system! The financial burden for control is shouldered by the caregivers based on their financial wherewithal. Treatment for severe retinopathy, neuropathy, organ failure, obesity, etc...are covered by the system! Talk about a band-aid for a bullet wound. If diabetes was labelled as a fatal disease, more might be available in advance of the inevitable.

Progressive thinking by governments about funding truely preventative measures for all diabetics (supplies for type 1's, fitness and lifestyle for type 2's) would save the health care system TRILLIONS. As it stands now...the deck is stacked against diabetics to fail...whether they had a fighting chance to avoid it or not.

I thank Oprah and Dr. Oz for doing a decent job of covering the topic, most of all bringing awareness, but I hope for a part 2.

Silence is deafening.

Every parent tells their kids not to cry. "stop crying, stop your whining, grow up, etc"

Perspective is everything, we don't see what not expresssing emotion in a child actually looks like.

I did today.

There is a saying that the "silence is deafening". A useful saying to describe how the sound of silence can create an avalanche of chatter in everyone's self conscience, the deafening roar of self doubt that comes without the release of sound and word. A weakness of a social organism is that without constant communication or environmental stimulation, we must face the fear of our own inner voices.

Today, Cadence had her A1C testing, Thyroid testing, and Celiac disease testing. These are all done by drawing venous blood from the patient and running a series of tests. Since Cadence was diagnosed, she has a white-coat anxiety. She may not consciously remember her diagnosis but certainly there's part of that experience that must subconsciously stay with her. The phlebotomist wrapped both arms looking for veins while Cadence looked on, sitting on my "wap". With the decision that there was not a good enough vein in her arm, they decided to go into her hand for a vein. With shooken hand she moved the needle through the skin and into the tiny vein, the entire time, Cadence watching silently, me holding her tightly. As she moved the needle back and forth, up and down, round and round looking for the blood, Cadence's eyes never moved from the needle...tears at bay. She shook on my lap and her face turned purple, shaking with incredible power, I could feel the sweat forming on her back against my arm...but she wouldn't break. True courage beheld. The silence of her courage was DEAFENING.

When the phlebotomist decided that it was not going to work and they needed to go back to the arm, Cadence looked at me and said "I don't want another poke", her hair wet on her brow. All I could say is that "I know sweetie, it'll be over soon". The second needle, plunged into her arm...she held fast for a few seconds, shook, turned purple and then lost it. Crying, sobbing, writhing against all while the 2 phlebotomists now hold her arm firmly to draw the vials. Cadence never took her eyes off of the needle, fixated upon the blood coming out.

Once it was finished and i had her settled, she looked at me and said "daddy, I have to use the potty"...as if she felt guilty for violating the no-cry principle. She sat there, holding my hand, and spoke quietly about the jelly beans she gets for successful potty excursions. Almost like she didn't want to bring up the "poke", escape from the environment and focus on jelly beans. We could all learn how to deal with stress through a toddler.

Parents often wish for silence from their kids....we should all take a moment to determine how loud that silence actually is.

b.