Wednesday, December 31, 2008

Happy - Merry - New

Resolutions....definitely be more attentive to my blog!

2008 was an AWESOME year. We had many trials but more successes this year. Cadence turned 2 years old, started pump therapy, and our family began to enjoy things outside of the big D.

I spent some time and compiled a video of our year, I hope you enjoy.



b.

Thursday, December 11, 2008

Pump Love


Cadence calls it her "Pack-Pack", just like the one Dora wears at all times. She knows that she can't go anywhere without it, a permanent feature of her clothing is to have the lump on her back, dangling by her side, or wedged into one of those useless pockets they put on toddler's pants. "MINE!" she says whenever we go to change basals, deliver insulin, or just see what's going on. It's pretty funny how much she loves the thing, so do her parents but for much different reasons.

Here's a play-by-play of our decision making last night, we'll get back to the pump-love soon.

Last night was a "D-night", Nic was out for dinner with her sister and it was Daddy-Cadence time! We put in a new infusion site yesterday and it was working BEAUTIFULLY all through the day. Mid single digit blood sugars all morning. Around 3-4 pm though, just over 24 hours after the new site went in, Cadence started to run high. We changed out the insulin cartridge with some fresh stuff, just before. I corrected for a 16.4 and then we chased spokes around the kitchen to try and bring things back to Earth. To no avail, just before dinner, she was 21.4!! A relatively carb-free dinner in the belly and we were off chasing spokey up and down the stairs. At 8pm just after a bath I check again and she's still sitting at 19.4. Bummer.

So here's the variables you face. It's bedtime, she's through the roof on blood sugars. We changed the insulin, soon after she went high. The insulin isn't more than a week old and has been in the fridge. Her infusion site has been working awesome for 1.5 days, normally we change them out on the 3rd, maybe even early into the 4th day with no problems.

Scenario A: I change the insulin,? What if it does nothing to change it out again and she stays hight through the night, develops Ketones, gets sick, dehydrates, and pees through her diaper.

Scenario B: Do I change the infusion site and anticipate that she will invariably go low in the middle of the night? As a habit, we usually don't change a site at night because Cadence is very sensitive with a new infusion site and we have to watch closely for unexpected lows for the first 6-8 hours.

Scenario C: Correct again and see if she comes down through the night? If she doesn't, I'm faced with the scenario as I was with "A" and now it's the middle of the night and we will need to bring down her blood sugar before breakfast, where she invariably spikes.

Scenario D: Change the infusion site and the insulin, and eliminate all possible variables and deal with a night low, and frequent middle of the night blood checks.

What would you do?

I chose a hybrid of D so to speak. I made up new insulin, just in case, and changed the infusion site. That way if with a new site, she doesn't come down I can now suspect the insulin, change that out and we're okay. If the new site does bring her down, I've not wasted a whole bunch of insulin. Solves all issues other than Thursday morning sleep deprivation.

Well, the new site worked beautifully and when I got up to check her at 2 am, sure enough she was trending downward 6.8 with 6 hours of sleep to go. Now we talk about pump love. Without the pump, you have no control over how much work basal insulin is going to do for Cadence, at 6.8 at 2am without an insulin pump ie on insulin shots, I'm probably going to a wake her up and make her drink some juice. With the pump, I manually "temp" her basal, meaning I can control how much she gets over the next number of hours. I reduced her basal level by about 30% for an hour to see if that would bring her sugar up. It wasn't enough, at 4 am she was 4.8. On shots, this is a foresure wake up and juice scenario, but with the pump, we knocked her basal down by 50% for 90 minutes, 2 hours later, she's is back to 6.8. No major low, no toddler sleep interruption (which is the biggest win for everyone).

What the pump allows a diabetic or their parent to do is become a pancreas. We used the pump for Cadence last night in a way that allows her to have normal resting blood sugars and not have any interruption in her rest. It gives us variable control for a variable activity and eating level which is essential when working with a toddler. Now that I hear that British Columbia is directly funding insulin pumps for children....I'm wondering why Alberta is still behind the times. If the parents of a child are willing to learn, the insulin pump can offer a new level of normalcy to your family.

Thanks pack-pack!
b.

Friday, November 14, 2008

World Diabetes Day

Today is an important day.  Today is WORLD DIABETES DAY!!  We hope you take time to consider what you can do to help.

I surveyed the diabetics in my practice this week to find out what they are planning on doing for the day and only one of two of them knew it was happening.  That has to change.  

We're heading out as a family tonight wearing the new and improved "One" t-shirts that I designed.  We will ask for questions and provide the answers :)  

Think it, celebrate it, find the cure.




b.


Tuesday, October 28, 2008

Happy Halloween!


Halloween is fast approaching and Cadence turns 2 years old on Thursday.  Holy smokes, this has certainly been the longest - shortest 2 years we've ever had :)

I said to a patient the other day about parenthood, especially one with special needs, "it's amazing, there's never been a stretch in my life where i've been awake for more hours yet remembered little of what happened."  Well...there was University....

I've had a bit of blogger-block of late, haven't had much to say in truth but as always, reading Sixuntilme always puts me in the frame of mind I need to be in, her energy is contagious.  

Here's the current conundrum for this week.  Cadence's birthday is October 30th...Halloween is the 31st.  Obviously those two dates will be necessarily tied together for the foreseeable future.  Sounds perfect, a great kids "holiday" to go along with a birthday, an instant themed birthday party.  The only issue is that Halloween, for kids is predominantly based upon "loot", and that is Candy.  Pure refined, tooth decaying, insulin sapping sugar.  A diabetic's parent's worst nightmare in truth.  So you take a child's birthday, necessarily tie it into Halloween and try to tell a 2 year old that you can have a birthday gift but not the candy.  Oh the irony!  

We're already planning how to bribe her with some broccoli :)

Tonight we plan the infusion site change, the new insulin, getting everything ready for Cadence's birthday/halloween party.  We're finally going to get another Continuous Glucose Monitor into her again for this weekend, and that data I plan on posting here for reference.  Hopefully everyone on the block is giving out diet candy on Friday......better have a backup plan.  

Once again, as the old saying goes "exercise is the only Panacea we know", so as Cadence runs from door to door with the other kids, she'll be able to absorb the sugar in her system better.  We'll probably let her have some candy, as every kid does, and just plan for a long night.  Who knows, it's our first one and we'll be going at it with considerable creativity.

Happy Halloween!

b.

Wednesday, September 10, 2008

Wow, it's been a while.

Summer happened and I haven't written in over a month.  Wow.

Lot's of things going on in our household for the last few months.  Cadence continues to grow at a furious pace which of course brings mass sugar roller coaster sessions.  We actually made a bunch of basal changes with her, mostly increases with timing tweaks, to accomodate her not breastfeeding any longer, and a ravenous appetite of a 22 month old.  I would like to say that we carefully and deliberately made incremental basal changes armed with the knowledge of hour by hour basal testing...but that would be bullshit.

We guessed.  Her sugars and basals were going along so great, so stable, then all of sudden it was like the pump turned off.  She had massive ongoing highs, sometimes taking 2-3 corrections to restore and horrible night time lows to boot.  All of this while Nic and Cadence were on the road in Windsor.  What's been interesting in our experience with a baby, now toddler with Type 1 diabetes is that it's a road less travelled and one that's even less maintained.  Almost no one, barring a few parents we've met online, have a clue how to manage a very young child with diabetes.  We're essentially blazing new trail.  So, after reading all the books, manuals, papers, guides, and websites we could about establishing insulin to carb ratios, Insulin sensitivity factors, correction factors, basal calculators....We took a W.A.G. , clinical lingo for a "Wild Ass Guess".  We doubled her breakfast basal, 30% increase to her afternoon, 15% dinner, 10% lower nighttime.  Guess what...it worked, she's doing way better now.

Now while I don't recommend anyone use this clinical approach for managing their diabetes, there's alot to be said about instinct.  I've talked to many diabetics who can tell you to within a few points, what their blood sugar is.  Certainly more accurate than the "acceptable 20% error" of traditional blood glucose meters.  It once again highlights one of the famous acronyms used in diabetes, which is: "YDMV" - Your Diabetes May Vary.  

The moral is that despite the rules and guidelines that are meant to help make decisions for people with or associated with this disease, asking questions and using your gut can be one of the finest tools of measurement at your disposal, certainly not one to be overlooked.  

Here's an experiment for all you type 1's out there, if an endo asks you how you feel...don't tell them your blood sugar first, answer the question.  It may change the approach to your care.

b.

Tuesday, July 29, 2008

CGMing...revisted

Well, after a long hiatus from the big needle of the continuous glucose monitor, we're back on as of last night.  We've had a bit of a sugar battle with Cadence over the last couple weeks, she seems to be growing and eating quite a bit more, thus her sugars have been a bit more variable of late.  She's funny though, certainly a product of her parents, go-go-go...EAT and so forth.  So we popped the Dexcom into her yesterday, the insertion of that device is SOOOOO MUCH BETTER than the Minimed product, it was over in a matter of seconds and she was unbothered by it for the most part.  The one thing about Dexcom is that the blood sugar values that it spits out seem to be a bit more accurate than the minimed.  I just wish it had the proper units on there and some rate of change arrows, that would be awesome.  

So, we're going to do some basal testing (as much as can be done with a ravenous toddler), and watch the sugars rise and fall over the week and make some changes.  It's amazing though, prior to having the CGM in her, we just corrected or bolused, checked blood sugar every hour or so and just let the chips fall where they may (with great success I might add).  Now that we have the CGM data in front of us it's addicting to see it change through the day.  :)

b.

Saturday, July 19, 2008

Milestones.




July 19th is Cadence's anniversary.  It was one year ago today that my little girl came within seconds of losing her life, and started a brand new one at the same time.

I've been up since 4am just thinking about the day we had last year.  Cadence had come down with a little flu the night before and was feeling off that morning and gradually seemed to 
be getting a bit worse.  I got home at about 10:30 as I was supposed to
 go and play in a Cancer charity tournament that day and Cadence was getting a bit sicker.  Nic and I are both doctors, we knew it was just the flu...and in an 8 month old it always seems to be worse than it probably is.  We covered our bases, even called health link to make sure we weren't missing something.

A mother's intuition really is the sixth sense.  Nicole just knew that something wasn't quite right with Cadence.  Yeah it was the flu but there was something that she wasn't comfortable with.  So, off to the Medical clinic we went to get her evaluated where we met the worst excuse for a physician (and perhaps the best testimonial of a broken health care model).  He walked into the room, never looked at the chart, never said hello, never even asked us a question.  He took one look at her and said "this child has pneumonia and needs an ambulance."  To which I replied "do at least want to look at the chart and find her name first?"  Nic was crushed and I was livid with this clown and unfortunately made sure he knew that I was unimpressed.  I carried Cadence out of the clinic and put her into the car seat, the medical receptionist from teh clinic came out after us and yelled in the parking lot (and no I'm not kidding) "the doctor told me to tell you that you are risking this child's life by leaving!"

Off to the children's hospital we went from there, I was seething mad and Nicole was very distraught and while we zipped down Crowchild Trail, we didn't notice that Cadence was starting to go unconscious in the car seat.  When I pulled her out of the car seat and hustled to the Emergency room entrance, we knew things were not going well, Cadence was immediately brought into the trauma room.  12 or so Doctors and Nurses worked feverishly to save her life.  They tried to get an IV into her but Cadence was so dehydrated that they were unsuccessful in her arms, legs, groin, and armpits.  Her veins had gone flat.  They then shaved her head to try to get a vein on her skull, with no success.  I was then asked to help hold her down as they took a drill and proceeded to drill a hole into her tibial bone marrow.  She writhed in my hands as I tried to tell her it was okay.  I'll never forget the sound.  The pumped a number of syringes of saline into her shin/bone marrow to begin the rehydration process and Cadence slipped into a coma that would last 4 days.  An 8 month old should not have to undergo something like this.

They wheeled her to CT scan to find out if there was any irreparable brain damage as the doctor talked to us in the hallway.  "It's diabetes" he said.  We were stunned, "in an 8 month old??" I replied, "it can't be, there must be something causing it."  We walked to Cadence's next home for the weekend in the intensive care unit, spinning from the events of the last 2 hours, only then realizing that we had left the front and back door of the house wide open on our way out.

With diabetes, Cadence's own immune system killed the cells that provide her with insulin.  Without insulin, the sugar that comes from the food (breast milk in her case) can't cross over from the blood stream to her muscles and organs.  The blood becomes very concentrated and through the process of osmosis, pulls water out of the cells in the body to the blood stream to balance the mineral : fluid ratio.  Cadence then pees out the excess fluid and the vicious cycle begins.  Her body begins to shut down without sugar supply, the endless supply of which circlulates through the blood stream, leaching fluid from the very cells reaching for sugar.  Without insuling, they are ignored.

The next 4 days were a whirlwind of emotional and physical drain as we watched around the clock for Cadence to show some signs of recovery.  The nurses had never seen a worse case of diabetic ketoacidosis nor had they ever seen it in an 8 month old baby.  Seeing my  little girl hooked to tubes and IV's, unresponsive...essentially dead...scarred me forever.
Cadence came home with us on Tuesday, 6 days after our world just about crumbled.  She was sent home early as she didn't respond well to blood checks, with lancets designed for 5 year olds, nor the veinous blood draws every 4 hours where I had to hold her down as she soiled herself in sheer panic.  We feel blessed that she will never remember the experience, it's our burden to carry that for her.  Now, with 15-20 blood checks every day and 6-8 injections, we resumed our new life at home, we fully comprehend how quickly life can change now.

In the last year we've gone from parents of a new baby girl, to nearly childless, to now the day to day life savers of a diabetic baby.  We've gone from injection therapy, to insulin pump therapy, breaking new ground for the diabetes health care team at the children's hospital.  I have become an insulin pump trainer and advocate for the therapy.  We have taken her disease from being a sad story, to one of inspiration for many families.  We have continued to make good on our pact to make Cadence's diabetes a positive in our life, not a negative.

We feel that the 2nd year of diabetes will be one of many challenges, but also one of self-discovery for Cadence.  She will understand at some point this year that she is special....she is different.  I  am committed to helping her understand that the difference is a positive one.  Diabetes is the one fatal, lifelong disease that the bearer has the opportunity to control.  After a year, we look at the next years as an opportunity....not a curse.

b.

Wednesday, June 11, 2008

D-Mergency (part 2)


We almost made it a calendar year between hospitalizations.

It's been a very hard year for our family, yet a year with great successes.  We went from a Coma, to an infant on 8 injections a day, to a pre-toddler on an insulin pump (shaking the diabetes establishment in this city) 6 months after diagnosis, and recently registered a lower, "absolutely amazing" 7.7 A1c for Cadence, only 3 months after her pump start.  But you still can't predict the d-mergency.  Nicole and Cadence went to Ontario to visit Gramma and Grampa, the first day they were there, Cadence had to be taken to the ER for an IV as vomiting and flu like symptoms threw her blood chemistry for a loop.  I was in San Francisco, standing in the parking lot of the Olympic Club when I got the text message saying that Cadence was in the hospital.  Everything that I felt last July came back to me as I read the words and I crumbled for a moment.

For diabetic children a trip to the ER for an IV is a part of life and it won't be the last one from what we're told.  It turned out to be a positive as Cadence was feeling much better a day later.  The fact remains that we strive to never have to be back to the hospital with Cadence and find it so ironic that our goal as parents, before diagnosis, was to never need emergency care for her.  The irony now is that we depend upon it for something as simple as a stomach flu.

Our one year D-versary comes up next month on July 19th.  We plan to make it a day of exceptional fun for Cadence and put last years experience far behind her.  We work everyday to make diabetes a positive in our family's lives, not a negative, and encourage other families to ensure that diabetes is not their disease but their opportunity.

b.

Tuesday, May 20, 2008

D-mergency


Even when I tried to put in the title, the blogger program changed the first letter to E.  Nobody understands :)

"Captain, we've got a D-mergency....Ketone field dead ahead, take evasive action"

The D-mergency is something that diabetics and their caregivers know all too well.  It's sort of the secret handshake that you'd rather not know.  The D-mergency is often associated with Murphy's Law as well.  We were at a birthday part last night for one of Cadence's friends.  First birthday party with kids, cake, pizza, and soda.  We were so excited to let her experience these foods for the first time and to see the power of the insulin pump in terms of dealing with these carbs.  We were all set, pump was going, infusion site did fine all day, as soon as we hit the front door apparently the infusion site decided it was finished...or Cadence's body felt that she was finished with it and it scarred over.  1 hour into the party before any food was put out she hit 20.3 on her meter, 4 times the normal range.  She felt like (or so I perceive) she just downed 5 big gulps.  She played quietly and jumped anxiously everytime anything around her made a sound, cried uncontrollably at the site of a party hat, weird stuff.  Back to Murphy's law...the one time we leave the house without a backup syringe/insulin/infusion set...is when we need to use it.

So, as the pizza was unboxed and after 2 corrections Cadence's sugar only climbed, we had to make our exit, take her away from the party to go and try to bring her sugar down.  We were all bummed out, it was a quiet ride home.  After we put in the new site, gave her a big bolus of insulin, her sugar started dropping and we had a little party at home.  Cadence had a taste of some frozen yogurt, danced to some music, and hit the sack a little later than normal.  Nic and I got ready for a long night of fighting the lows often associated with a high correction and a new infusion site.

We know the secret "D" handshake and every day wish that we didn't.  The trick is to make every attempt to use it as little as possible and make day to day life and normal and vibrant as possible.  Diabetes is a life ending disease without an obvious disability or a cure.  A great quote I read yesterday rings so true "you don't get time off for good behavior", you just have to try to keep the ship headed in the right direction.

For an awesome perspective on diabetes read this article on Jake Cutler, quarterback for the Denver Broncos.  We are officially Bronco fans now.

b.

Monday, April 28, 2008

The comfort of a needle...


An interesting revelation was had earlier this week.  Cadence has had a cold/ear infection/ eye teeth coming in...you name it, this week has been one for the books.  Lying in the weeds, there is always the "D" and the sugar irregularity that comes with illness and irritability in a toddler. Is she high, super high, or low?  Those are the questions we ask.

It brings me back to my original point about revelations.  Parents of diabetics...scratch that...diabetics in general should not be too quick to switch to pump therapy, meaning that spending the first few months, let's say 3-4 months if we need to pick a number, is very important.  An about face?  No, just a realization that the time that we spent jabbing our baby with 6-8 needles per day, soothing the crying afterward taught us how to be strong, resiliant, and competent diabetic caregivers.  We have a keen understanding of how insulin works on our daughter, we are not afraid to stick her with a needle if needed, no matter how hard she fights.  That's a unique skill and not one to be underestimated.  Not convinced?  Ask someone on the street if they would be willing to give you an injection, would you trust them to do it for one?  Number two, would they be willing to give you a lifesaving injection?  Social experiment time.  

I know from our situation, the answer to the latter is probably not.  We have people close to us that refuse to learn how to save my daughter's life.  It makes you scratch your head asking why, but then again perhaps it is just how anyone else would behave.  Who wants to give a needle to someone?  Is it unreasonable then for us as parents to ask for help?  Is our wish for a couple hours off of diabetes forcing someone else to enter into an extremely uncomfortable situation? Are we being unfair?

So, the pump is absolutely awesome in the sense that it takes away the injection side of diabetes, which solves the social experiment.  It can provide very finite control, and offers immense lifestyle flexibility.  We celebrate those parts of it every day.  I hope that most Type one diabetics, when they are ready take this step toward normalizing and enhancing your life.  What the pump adds however is the uncertainty of the equipment, did the infusion site work, is the pump working properly, is there air in the line (we had to prime out bubbles twice today)?  Combine the unpredictability of diabetes and you can quickly begin chasing your tail if you don't remain centered.  With a needle, you always know the insulin went in.  

That is the comfort of the needle.

b.




Thursday, April 17, 2008

Pumping - a 2 week check in


What a whirlwind that last 2 weeks has been for our family!

Cadence began pumping on her Animas 2020 on March 31.  We started on one basal pattern and then went from there.  There's been alot of tweaking with her Insulin to Carb ratio (how many carbs 1 unit of insulin will cover), her Insulin Sensitivity Factor (of which I have no idea how they calculate), and of course the basal rates (how much background insulin she gets during periods of the day).  

Four days into the pump start we started getting some highs, it turns out that Cadence picked that week to get a cold and pinkeye.  Fun...not.  So we rode the high sugar express for the next 5 days, threw out any hope of dialing in our pump settings for that period in time and just wiped the nose and soothed the cries.  It was like real parenting!

After the illness was over we are back to the adjustment of no needles.  That being said we still have to put in Cadence's infusion sets every three days.  An infusion set (in our case) is a spring loaded needle device that puts a flexible plastic tube under cadence's skin with a port/interface above the skin which we attach her pump tubing.  It's pretty slick and easy but there is more involved with it than a regular injection.  Numbing the site, priming the pump, mixing new insulin, etc. etc.  

We've worked out a few kinks in the system as well.  We had an infusion set go bad on us one night and Cadence's blood sugar shot up into the 20's (VERY high), so I had to give her a needle at 3am one night to bring her sugar down.  So, the no-needle streak lasted 6 days, but was also the last one I've given since.  

One of the hardest adjustments to the pump thing is where we put it.  We bought a bunch of tank tops from Pumpwear, which are simply a little pocket on the shirt to hold the pump.  That covers the daytime hours, the night time is the weird one.  We can't figure out exactly how we want to have the pump on Cadence at night, leave it loose?  Drop it down one of the legs of her pajamas?  Pump pack?  We're trying everything out,  One night Nic went to pick her up out of her crib and the pump was wrapped around one of the bars and "rip", out came the infusion site (ouch).  Cadence was unimpressed and irritated by that.  Luckily, on a tip from another diabetic, we left the old site in for a few hours "just in case", no we reconnected and changed the site again in the morning.  GREAT tip there.

Overall we are loving the pump and Cadence's control seems to be better.  Lots of tweaking to be done still but as I've said before, I can't believe we waited this long to go this way.

b.


Sunday, March 30, 2008

The Last Shot.




I can't believe we're here already.  March 30th, the eve of a very fresh start for Cadence.  We start insulin pump therapy with Cadence as of tomorrow morning.  From here till....well....who knows, Cadence will have the pink Animas 2020 saving her life everyday.  The pump will be attached to her 24/7 delivery micro amounts of insulin.  We can push buttons to deliver higher amounts for food or highs, suspend delivery if she's low or sick.  It's very exciting to have the potential for incredible control of her diabetes.  For the last 7 months, we give her a bunch of insulin and hope that she takes in enough carbs to cover the insulin and also that we've given her enough insulin to cover the breast feeds...let alone trying to figure out how many carbs are in the milk and how much she takes in.  Our A1C is really just an average of the highs and lows.

I  have 3 syringes left to give her, and then there's no more needles.  That point is just so valuable to me, I can't even describe it.  I came home the other night from work and she was happy to see me but ran away because she knew it was time for a needle.  I can't even tell you how hard that is for me as a dad.  Nic and I are so happy to be free of having to stick Cadence with 8 needles a day...for now.  I remember the first one I gave her last year and I almost broke down doing it, it's easier to do now, I'm better at it.  The hardest part is that she cries a bit, holds the injection site, and gives me the ultimate hairy eyeball.  So I say (to a baby) "sorry Buttons."  I'm sure she's saying "whatever dad, I'll get you when I'm 14."






The stomach bruises suck.





A quick calculation will show that Cadence has had diabetes for just over half of her life, she is now 17 months old.  She has endured approximately 1856 needles and nearly 4000 blood checks.  The little girl is tough as nails and she amazes me.



So, today is kind of like Christmas eve the anticipation is palpable but everyone in our house has a sense of confidence and anticipation for this next chapter in her life.  


Until tomorrow,
Brad.

Saturday, March 15, 2008

Random question...



Why the heck is Diabetes plural?  I understand there are two types but couldn't me more opposite of each other. 
Perhaps Diabetes is plural because it is not only the patient that has to deal with it...it's everyone around them.  Parents of a diabetic become diabetic by association.

In other news, we have received the Pink Animas 2020 pump and the Guardian CGMS system is on order and we should have it early next week.  We're super excited to get started on things.

Also, all three of us are racing in the St. Paddy's Day 10km race tomorrow in support of the Canadian Diabetes Association.  I made some race shirts for Nic and I and designed a family team logo.  

Team Cadence is born:








Friday, March 14, 2008

Sales



What a decision Cadence's insulin pump was.  It would seem to be a simple choice when it comes down to 2 products:

1. Minimed 522 with CGMS
2. Animas 2020 with a standalone CGMS

Minimed was 1 unit for Cadence to carry, Animas would require 2.  Seems like an easy choice until you factor in who is involved with providing and servicing the device that will be attached to my daughter for the next 4 years 24/7 saving her life every moment she wears it.  It's a hard decision and I agonized over it.

In speaking with the different representatives of the pump companies it became abundantly clear that there are those who look at their job with passion and those that may not.  A BIG
 for instance:  I made a deal with the minimed rep, confirmed it with a handshake, that this company would provide Cadence with free CGMS sensors for a year if I was willing to become an educator/advocate for their products.  I let the rep know that we may not choose their pump, which is obviously the product they wish to sell (7000 dollars worth of reasons), but would most likely go with their CGMS product,  if we decided against their pump (2000 dollars).  The rep said that she that was no problem and just wanted what was best for Cadence, "the deal was still on".

So, we ended up choosing the Animas pump for  many, reasons, and more which were revealed this morning.  Unfortunately, Minimed's rep has pulled our "agreement" citing having to talk to the manager.  I said "so am I to assume the deal that you made with me on Cadence's sensors is dead now and I am to proceed on my own?" which was replied "I'm going to have to take a step back".

Good deals sometimes have hidden conditions.

We love our Animas pump and the people behind it.  Minimed in our experience is a big company with numbers of clients.  After my conversation today we are more than pleased with our decision.  That said, they have my money as I still bought Cadence the Guardian CGMS unit and sensors but it was based on the technology and its ability to help Cadence, not the pitch.  A word of advice to the Minimed rep don't use someone's health the most valuable commodity we have, as leverage to make a sale.  It's bad practice, it's bad business, it's bad ethics, you should know better.  

b.

Tuesday, February 26, 2008

Minimed Guardian


The Dexcom 7 trial was awesome.
Despite some of its shortcomings, the accuracy of information gleaned from the Dexcom 7 was invaluable.  Within 2 days we were able to set a much lower target BG for Cadence's bedtime as we noticed that she doesn't drop significantly in the middle of the night.  This does usually require a small breastfeed at about 3 am and a correction dose (.5U) of humalog for those carbs but she is sleeping from 9pm to anywhere between 6:30 and 8:30 in the morning.  I'm up and gone for work before 6am so I miss the sleep-in (bummer!).  This tweak alone takes out Cadence's high nighttime BG's.  Last night, she slept soundly and hovered at 5.6-8.0 mmol/L for the whole night.  This has been so nice to see.

Some huge pluses for the Dexcom:  
 - small insertion needle
 - no dangley bits on the sensor, everything is affixed securely.
 - seven days of wear (sooo nice)
 - good software program
 - menu's are simple

Some downsides:
 - It's been said before, that damn sync cable and choice of only the Onetouch Ultra.  
 - awkward receiver size
 - not able to scroll backward on the receiver to see past data (love this about the minimed)
 - no 24 hour trend screen

There are some other hassles but those are the majority.  Overall we were extremely satisfied with the Dexcom 7 system.

When we tried the minimed paradigm 522 pump/CGM earlier this month I always felt like we didn't give it a fair opportunity to show us what it could do.  Admittedly the sensor wasn't secured as well as it could be with the tegaderm.  The clamshell/sensor interface was right at the top of the diaper, we calibrated during times of not so stable sugars, etc.  We are now testing the Minimed Guardian system, which is the stand alone CGMS for minimed.  It's essentially a 522 without the pump in it.  The CGMS has quite a few more features than the 522 does.

The sensor insertion went MUCH better this time than our last go-round.  Using some of the mistakes that we made last time, Cadence did fine with it.  The sensor went in easy, we covered everything securely with tegaderm, and she was playing happily within minutes of the event.  The startup and calibration went off without a hitch and the data through the day yesterday was very accurate.  A nice change from our experience with the 522.

The Guardian has "predictive alarm" capability which already has come in handy.  Cadence and I were out with Spokes, the family airedale terrier for a walk yesterday.  About 3/4 through the walk I heard an alarm from the Guardian, checked it and it said "predicted low alert", so i did a blood sugar check and sure enough she was dropping quickly but still in an ok range.  So, I gave her some fruit bar to chew on and we marched back to the house.  As we approached the house I heard another alarm and the Guardian said LOW.  I got everyone into the house and checked Cadence's blood sugar, it read 3.4.  That's getting a bit dangerous so I quickly grabbed some banana and soy milk and we had some snacks.  In checking the "Real-Time" BG reading, the Guardian showed her as 4.5 with 2 arrows dropping (very quick).  So, that's the 15-20 minute delay that exists.  The BG reading is not accurate but the trend is, we knew it was going to be lower.  

So, this predictive alarm is fantastic...except at night.  We were up a bunch last night to turn off the predicted low alarm as Cadence was 0.1 mmol/L under our threshold but holding steady.  This isn't a knock against the feature, it's doing exactly what it's supposed to do, but we will now turn it off at bedtime and set her low threshold a tad higher.  After I turned that off, the night went perfectly.

So, we'll spend the next 6 days or so testing the Guardian before we make our final decision on which device we will use and will keep things updated here.

On a side note, we had a meeting at the Diabetes Clinic yesterday and our nurse asked me "how are you doing?"  It wasn't a casual, looking for a canned answer, kind of question.  She was referring to how I was dealing with the experience of my role with Cadence in the hospital.  I was the one who held her down while the ER docs drilled into her shin to get fluid into her, looked in her eyes and saw the fleeting life, fear, pain, and panic.  I held her down when the phlebotomist came into draw venous blood as she would soil herself in panic.  It haunted me for months, and still does I now realize.  I guess I sort of repressed it a bit through alcohol and focusing on other things.  I feel like I'm on the other side of those habits though.  Her question really brought back some difficult feelings and flashbacks, but also a significant question:  

Would I trade the experience of being there for her through those moments vs. not knowing the panic that she went through?  Would it be better if I didn't see it?

It didn't take me more than a millisecond to decide: Not a chance...I feel lucky that I was the one to be there to try and comfort her, I hope she in some way remembers that I was there.  So, yes I struggle but I wouldn't trade it either.

b.

Wednesday, February 20, 2008

Dexcom - day 5


We are dexcom day 5 with Cadence.  What a great little device, which has already paid for itself in spades after a scary low on the weekend.
We were cruising through a showhome in our 'hood looking to
 steal some decorating ideas for our little hacienda.  Cadence was ripping around the house, up and down stairs, jabbering at all the other people milling about in there on Sunday afternoon.  We heard the chirp from her Dexcom CGMS and the warning that she was dropping low.  We sort of expected her to go down a bit as a result of her activity, so we casually picked her up, went over to the kitchen table in the showhome and did a quiet fingerpoke.  The number on the blood glucose meter said 2.2 mmol/L (35 md/dL).  That is a severe low and a very dangerous one for a 15 month old.  The worst part is that she had no idea...  confirming our suspicion of "hypoglycemic unawareness".  Cadence doesn't feel her lows, where as most diabetics feel horrible during a low, it's their safety net.

So, I sprinted out of the showhome to grab whatever carbs we had from the car, while Nic put Cadence on the boob.  I grabbed fruit bars, soy milk, anything really, and ran back into the showhome to the surprise of the salespeople there.  So with about 25-30 people moving in and about the showhome we treated Cadence's second lowest glucose reading since her diagnosis.  We had carbs, a sock, and bloody test strips layed out over the kitchen table...in the middle of the showhome.  Sometimes you just have to make due LOL.  Once recovered, we continued the tour through and upon exiting she showhome manager says "that must have been some diaper change!  By the way, is that a GPS on your daughter?"  :)

Now, onto the Dexcom.  What a great little device, and proven so in the above story.  We are on day 5 and the finger stick readings comparative to the dexcom trends are very close if not bang on.  If there is a difference, it's usually as a result of taking a reading at the peak or valley of of change in glucose levels.  Otherwise, the dexcom is usually well within 10 points (mg/dL) of the meter reading, a huge plus.  With the minimed system we had values that were absolutely nowhere near what her blood glucose reading was, even at times of stable sugars.  So the question begs:  What's the point on putting a "real-time" blood glucose reading on your display if the user is amazed if and when it's accurate?  The trending bars are invaluable though.
We are still undecided as to which technology we are going to invest in but the Dexcom appears to be a better product.  If only they could pay one computer programmer for 3 hours work and make some rate of change arrows (like minimed's) and have an option to use mmol/L or mg/dL, it would be the giant killer of Minimed product.  For the price of these "next generation" units it's amazing that a handheld poker game from the airport has more display and computing capability than these devices.  We're going to give the minimed another shot next week though and see if it can stand the test.  

With Cadence's hypoglycemic unawareness, it appears that we don't have much of a choice of not going with a CGMS.

Saturday, February 16, 2008

The Dexcom experiment has begun

I was able to secure a Dexcom 7 unit during my last trip south.  We have engineered the rare opportunity to test both the Minimed CGMS system and it's competitor Dexcom.  Dexcom is not available in Canada unfortunately.  Through several conversations with many people in the US  I was able to get one for her.
A couple problems with this system already is that it still is only capable of communicating with the OneTouch Ultra meter which IMHO is a POS.  Further it needs to communica
te through a cable.  Why this was deemed to be a good idea vs. manual calibration with whatever meter you like to use is beyond good reason and stinks of corporate collusion between Onetouch and Dexcom.  
Dexcom has plans to change this but it hasn't happened as yet.  Also, the Dexcom CGMS system was designed only to use the US mg/dl scale and cannot be programmed for
mmol/L, again the rep has said this is to be updated soon.  


I greatly appreciate the 7 day wear and smaller needle insertion size (26 gauge Dexcom vs. 23 gauge Minimed) and the insertion of the Dexcom was definitely easier with Cadence.  When we did the Minilink sensor Cadence cried hard and grabbed at the area for a few hours afterward, anytime we tried to inspect the area she was quite upset by our efforts.  The Dexcom in
sertion however was absolutely easy, no tears, completely unbothered by it, and in fact immediately after sat in her highchair and had dinner, sitting on the sensor.  Pretty amazing difference and definitely a +1 for Dexcom.
The insertion device is good, I would say a bit better than the Senserter (Minimed's) but the sensor latch/tab...the little doo-hickey to snap the transmitter in place is goofy in the way it must be broken off.  Cadence, didn't like that part to be sure.  Both units, Minimed and Dexcom, could be greatly improved...easily.

We are in the middle of the 2 hour calibration period and will report more tomorrow once we see readings.  


so far so good!
brad.  


P.S. - I find the google ad beside this post about how to reverse your diabetes oh so comical...if only :)

Tuesday, February 12, 2008

Gadgets rule - The Continuous Glucose Monitor


Really interesting last few days. We finally generated enough courage to put Cadence on the Medtronic Minimed Continuous Glucose Monitor.

The CGMS system is designed to give "real-time" reading of Cadence's blood glucose readings. The problem is that it reads the glucose content of the interstitial fluid, the glucose meter that is used for finger poking measures actual blood glucose. The interstitial fluid is about 15-20 minutes behind. This may not seem like a bunch of time, but it does make a difference.

This little do-dad has a huge scary needle for insertion. In fact it took us 4 days to gather enough courage to do it. We finally decided that yesterday was the day. We numbed the insertion site with Emla cream, bent her over and using the "senserter" I jabbed the 23guage needle into her butt cheek....and it didn't go in...crap. Blood came out though and the crying ensued. A little panic by the parents and we decided to tray again. So, we grabbed the senserter again, reloaded and into the flesh we went again this time with success and actually no bleeding.

The readings yesterday were all over the map, we had a significant low yesterday afternoon that the CGMS completely missed. It did show a large trend downward though, so we had an idea that it was happening and that seems to be the value in this device. You can't trust the number and you're happy if it's close but you can watch to see if a trend is developing instead of finding out what's happening late.

We've only been hooked up to this thing for 24 hours now but I can already say that it's really a valuable tool in terms of seeing trends. The problem with point in time blood glucose monitoring (finger-pokes) is that you have an absolute value but no idea in which direction and how fast that value is changing. We did a poke with Cadence yesterday and she was 11.8, relatively high but the CGMS monitor showed a significant downward trend. Why is this important? Well, she was heading for a nap, if we had given a dose of insulin prior to that...the low would have been severe. Without a correction, she went down to 2.9. Now mind you, the CGMS missed the low but showed us it might be happening. We did a fingerpoke and caught it before it was too severe.

The big question is: Is it "WORTH" 6000 dollars a year....that's one that's hard to wrestle down.

I ordered the Dexcom 7 competitor unit last night as well to try it out. Many of the CGMS debates out there minimed vs. dexcom are based on an insurance coverage mindset of which we don't have. That puts us in a situation of being able to decide between the two based upon their merits.

Overall, very interesting experiment thus far.

b.

Friday, January 11, 2008

teaching the teacher


Cadence had her first flu since she was diagnosed this week. Vomiting, diarrhea, the whole nine yards. Our laundry machine need a vacation.

We had been prepped and educated about how different illness management is with a diabetic child. I didn't realize how difficult it actually is. With insulin working in her system and her being unable to take in any foods or fluids, we battle low blood sugars, dangerous lows at that. Oh what fun it was holding a sick baby down, forcing her mouth open and pouring maple syrup down her throat was on Thursday...otherwise it was hospital time.

It was during these moments (there were 3 this week) that we realized as well controlled as we keep Cadence's diabetes and how 'impressed' the diabetes nurses are with our management of her, how far from controlled she is. We react as there's almost no way to predict what her next sugar will be. Exhausting google about insulin management it seems as though continuous glucose monitoring (CGM) and insulin pump therapies are increasingly becoming the best predictive management tool for a type 1 diabetic. The problem is that these devices are priced for insurance coverage, of which we don't have.

Insulin Pump - 6000.00 (lasts 5 years)
Supplies - approximately 500 per month.

CGM - 800
Supplies - 250/month

So, another question comes up about our great socialist health care system in Alberta. Which is one of the provinces in Canada that does not fund a single thing for diabetes. Our health care policy rings with words of prevention, maintaining good health, etc....while fully aware that diabetes (predominantly Type 2) is reaching epidemic proportions worldwide and could soon be the single largest drain on the health care system due to long term complications. 1 in 10 hospitalizations are from diabetes related illnesses that stem from poor sugar control. Wouldn't it make sense for our government to make things like pump therapy and CGM available to diabetics so that they are less straining on the system?

The question of proactive health care funding for Albertans, and Canadians for that matter is one that is historically been rhetorical. Someone mentions it, governments adopt the terminology, and nothing really changes. More money is put into emergency care.

I've started to do some leg-work to lobby our government, which right now is swimming in money, to look at funding pump therapy for diabetics. I like to say I have completely altruistic intentions with this and it's for the good of the people...truthfully, it's so that we can avoid another week like this one. If the rest of the type 1's in Alberta can benefit from it though, that would be an enormous value added.

b.