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 The data/research presented was outdated, the technology has not progressed in any significant fashion in the last 5 years, nor have the devices to monitor it.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.

Little bursts of honeymoon

What's a honeymoon?

It's a little break from Diabetes. A type 1 can expect that at some point in their lives, their pancreas will magically kick back in for a period of time. Often it can follow an illness, ironically, much the same way that diabetes follows an illness. The "Honeymoon" as it's called, can last anywhere from a few hours to a few months, even a few years in rare cases. Imagine that, as a diabetic, you wake up one morning and your diabetes is in remission! No more shots, no more carb counting, no more 2am lows as you awake covered in sweat, disoriented looking for anything with sugar in it. Or that morning high blood sugar where you feel like you want to crawl out of your skin, the same skin that you have to plunge a syringe into to get control. A honeymoon is a little slice of happiness and confusion rolled into the same package.

Diabetes is a condition of routine. You eat what you eat because you've pre-planned what your sugar will do. You eat when you eat because that's what you've planned for with your insulin. Variations in any number of factors only leads to chaos and correction, which is why so many of the diabetics in the world are resistant to try newer, more advanced insulins, pumps, CGM's, etc. Change means uncertainty, uncertainty leads to stress, and stress leads to more uncertainty, all of which mess with your sugars and challenge your sense of control.

It would seem from all of the above that a honeymoon would be a romantic breakaway with any food you like, whenever you like, a full night's sleep (WOW), a untethered second helping of dessert maybe....hmm that does sound good. In reality however, for a caregiver of a diabetic at least, it's kind of like driving into the setting sun. It's gorgeous but you can't see a damn thing and you're not quite sure when it's going to end, just that it will. Every parent has this little flicker of hope during the honeymoon that maybe it's gone for good, but inevitably the highs come back and the glimpse of the cure fades.

Let me clarify that I don't mean to imply that honeymoons aren't great things. They are awesome for the diabetic I can assume. Come to think of it, maybe it's actually just hard on the caregiver as you're always looking on a map that you can't see. Maybe for the owner of the disease it's something you can feel?? I'd love to hear opinions on that foresure.

So, on Wednesday and Thursday we are on day 4 with a leg site on her, which only ever lasts until the 3rd day...and she's had 55 carbs of unbolused correction to handle sugar at or below 4.0mmol/L all day with a 30% cut of basal. It's stressful for us but such a nice little treat to see her system actually working. It shows that theres hope that one day we can hack into and crash the program that tells her islets to stay on the sidelines. I would LOVE to see them to come off the bench for a little longer.

8:30am 13.6mmol/L with 0.25 to correct, back to routine, thanks for the honeymoon.

b.

Animas Ping...first weekend review

Cadence's new insulin pump arrived at the office on the weekend! The much awaited Animas Ping!

My review of "the new hotness":

The Animas Ping is Johnson & Johnson's newest product for diabetes, updating a great previous model in the animas 2020. Cadence has been pumping with the 2020 since March of 2008 and we've never regretted our Animas decision for a single day. Awesome company lined with an incredible device. The Ping was a bit of surprise release as the blogs, boards, and tweets all predicted that an Animas/Dexcom integrated product would be the next release but that has lost quite a bit of attention. My intuition tells me that they can't find a way to integrate an infusion set with a CGM sensor from a cost effectiveness standpoint and also how to make them last/fail at the same rate. Likely a hurdle that can't be solved in the short term, but I digress.

The Animas Ping is a swank new sparkle pink color (or green, or silver, or blue etc), and a bit bigger, probably 1cm longer than the 2020 predecessor. Aside from a small size difference, the guts of the pump are relatively unchanged. The display and readout are similar with some additional customizable features with sounds/alerts than what was offered on the 2020. One thing that Animas neglected was to add the IOB onto the home screen. This was a much talked about miss that the bloggers/boards discussed 2 years ago regarding the 2020 was that you had 3-4 screens to go through to get to the Insulin on Board. As any pumper or parent of one in our case, the IOB is just as valuable than seeing the current basal rate, especially for temping.

The magic of the Ping however, is the wireless function of the OneTouch Ping glucose meter. You literally have a remote display of the pump in the glucose meter. You can bolus from the meter without having to fish the pump out of yours or your running like mad toddler to push buttons. She can continue to run laps around the kitchen with a crayon coloring the drywall while you sit in a chair and casually bolus for her dinner....so to speak :-) . For those operating their own pump, the big advantage is discretion in that you don't have to reach into your clothing to remove the pump, you can do everything via the meter.

EXCEPT: change your basal rate, or temp your basal! That's right, you can bolus insulin but not change basal rate unless you have the pump in hand. (Yes, you read that correctly.)

With Cadence, we probably temp her basal rate at least 1x day if not more depending on sugar and activity. To not include this option onto the Ping meter can only be described as an EPIC FAIL. So we still have to fish the pump out while holding her down to tweak the basal rate. I'd love to know the reasons behind leaving this feature out but likely it was a time to market decision. Hopefully this is fixed soon with a software update. When we ordered the Ping I didn't even research as to whether this would be included.

This massive gaff in R&D judgement aside, I can't even begin to describe how much we love the new Ping. Proof in the pudding was at Cadence's Halloween party, her pump was buried under layers of princess costume and we never had to interrupt her play sessions other than for a quick blood test. The discretion that being "wireless" with the pump provides is just so valuable. Especially now as Cadence realizes that she's a bit different from everyone else. More proof of that was at each house she trick or treated at she followed the treat with "I don't wike candy..." and walked down the steps. It was hilarious to say the least. For her social circle though, for the other kids to not see a device connected with tubing to her body 24/7 is valuable enough for her self esteem to warrant the cost of the upgrade from the 2020.

Overall, this is a tremendously good product that is long overdue. The Ping pump carries the same great information and user friendliness found in the layout and function of the 2020 pump. The Ping blood checker works as well as any other OneTouch meter and the menus are easy to navigate and the setup between the pump and meter is very intuitive.

For those on the fence regarding an upgrade, in my opinion a worthwhile one indeed. For those contemplating a pump for yourself or your child, the Animas product is as good as they come!

B.

The gorilla in the room...

The 2 most common questions:

1. How is Cadence, have you got the diabetes under control?
Answer: As of her last check an hour ago, she's under control.

2. Does Hailey have it yet?
Answer: No...I hope not.

Nic and I were hit from all sides on the debate about more children after Cadence was diagnosed with Type1 diabetes after just finishing a 6month bout of colic.

"You have enough on your plate"

"You guys really need to have a good baby next time"

"Why take the risk, what if the next on gets it?"

There's something about the constant puking, green poop, and long nights pacing the floor that the SMILE when I say "Hi Baby Hailey" doesn't completely erase. It's all worth it man to see her just so happy to be.

I find myself unconcerned for the most part about whether or not Hailey's islets cells are slowly shutting down. There's no way to know really, just wait until the Gorilla in the room (you see the analogy I hope) wakes up I suppose...if it does at all. The other day I went to check on her in the middle of the night and the diaper was absolutely full and she was very hungry/thirsty for milk. What was my first thought? Of course it was: I wonder what her blood sugar is....but i never checked. Change the diaper, give her some milk, and head back to sleep and hope that in the morning the diaper is bone-dry, which it was.

The truth of it is that for kids diagnosed under the age of 10, the risk of a sibling developing the disease is less than 1.5%. Is a 98.5% chance of a perfectly normal little baby/child worth the risk. That smile answers the question every time, you bet it is.

Finding comfort in the unfortunate.

We had a wonderful night tonight.

Cadence had a tantrum, pee'd on the floor, splashed the pee-puddle onto me, pooped in her diaper, Hailey puked on my shoulders, arm, foot, shirt, shorts, and shoe, and we had a blast with "baby JJ" who only filled one diaper and his lap with food.

Two friends of ours became much, much closer friends. Two children that have only had one meeting now have a lifelong link. Diabetes is like any other disease in that it has no preference for who it affects, nor does it care how many it affects. It can't however choose who fights against and who they fight with.

Tonight was a rebuttal of sorts to the lurking "D" that we meet everyday and hate each time. Jeff and Karen remind us so much of us and JJ reminds me so much of Cadence a few short months ago. The link between Cadence and JJ was uncanny, at least from Cadence's perspective. Someone with diabetes......let's talk jibberish and figure it out is what they shared. Cadence knows she's different and knows JJ's different...that bond is forever.

It's amazing to watch a child have an injection of insulin. The ultimate of love-hate. You see the squint and tears but rejoice in the fact that the facial expression ensures another 4 hours of diabetes bliss...good sugar. Then the check, the discussion, the decision, the half hour in bed wondering if you made the right choice, only 90 minutes to sleep before the next decision.

It's unfortunate that our families are drawn closer as a result of our Children's misfortune but I can't imagine a better reason for families to come together than that of mutual support and dedication to our Children. We sadly welcome JJ to the D-family and wish he and his wonderful parents nothing but good sugars and a cure down the road and we couldn't be happier to have good friends to be good friends in the good bg's and bad. J-K-J had a hell of a week that we wish upon noone, but have handled it with incredible poise. We've done what we can tonight but hope they know that there are others out there and we are just a phone call away at any time of the day of any day. Diabetes never rests, nor will those that battle it. The bond that we share is a lifelong struggle for future generations and what more noble cause than that.

9.7 with 0.35 onboard....another 4 hours of peace.

b.