insulin – This is Caleb…

March 27, 2013March 27, 2013

Smaller Vial Equals Improved Potency

The unofficial theory I’ve heard is: that which makes Apidra® work quicker (remember apidra is Pig Latin for rapid) also makes it more susceptible to “going bad” quicker. I think of it this way: its composition is broken down allowing it to do it’s job faster, but that broken-down state means that it’s closer to losing its potency.

I read this somewhere some time on some forum. It made sense to me so I tend to believe it. I don’t know if it’s accurate.

After using Apidra® for a while and having great success, I started to notice that toward the end of a 1000 u vial of insulin, numbers seemed to creep up a bit. To isolate this variable to be sure the higher BGs coincided with the age of the insulin vial takes data tracking and analysis. The work I did in this area was not extensive, but in general, I think the older the vial, the lesser the potency.

I did not see this with Novolog®. Once I took a vial out of the fridge I didn’t put it back. I continued this practice with Apidra®. I had heard Apidra® was more vulnerable to spoilage from heat. So at first I tried to keep the vials in the fridge between changes. That became cumbersome.

My dear friend, Cari, told me that she uses pen vials for her son’s insulin source (a fellow OmniPodder). This serves two purposes:

1) It allows for flexibility if you need to give an injection. Say you have a pump delivery issue (and yes, ours are almost nonexistent at this point, but not completely eradicated) rather than needing to change a Pod or draw up a dose with a regular needle because perhaps it’s not exactly convenient to do so in the middle of a restaurant or when you’re on the pitcher’s mound, you are prepared with the ease and convenience of an insulin pen.

2) The amount of insulin you have unrefrigerated at any time is significantly less. The vials are 300 u rather than 1000 u. Instead of using one vial per month, we’re using one a week.

Poof! The monthly bg creep issue was eliminated. I no longer worry about the age of the insulin and whether it’s gone bad.

With so many variables to manage with diabetes, being able to eliminate one is a win! With two day site changes and smaller vials, we’re up to two! Win, win!!

December 22, 2010January 3, 2012

Insulin Ornaments

We made OmniPod ornaments the year Caleb was diagnosed and began pumping.

This year, inspired by these and these, we made insulin vial ormanents.

We made one for each Christmas Caleb has had diabetes – each from a different type of insulin…

Insulin Vial Ornaments 2010 — NPH, Lantus, Diluted Humalog (notes on the back of the year tag to explain each insulin's use).

or in this case, glucagon.

Glucagon Vial Ornament - 2010 — Glucagon

Then we made several more to give to people who support him including his school nurse, his teacher and family members.

Happy holidays!

December 15, 2010February 26, 2011

Apidra® v. 140 | Sanofi-aventis

It had been well over a year that I had been inquiring of Caleb’s endo about Apidra®. I consistently got two responses: (1) it’s the same as the other fast acting insulins and (2) there’s nothing wrong with Caleb’s management, so don’t mess with it.

I wasn’t convinced about point one, but I did accept point two. Change plus diabetes often equates to hell on earth and I wasn’t too interested in inviting that in. I wasn’t trying to change Caleb’s numbers, so buying into “if it ain’t broke don’t fix it” seemed reasonable.

But the problem is, it is broken.

His pancreas is broken and achieving acceptable blood sugars with a broken pancreas is a lot of work and I’ll take all the help I can get.

My gut told me Apidra® would help Caleb and after talking to a number of users, I firmly dug my heels in and instead of asking for an opinion, I simply asked for a sample.

Our Apidra® journey started a couple of months ago and so far I am enjoying the ride.

My sole reason for wanting Apidra® was to minimize the tail of insulin duration. If I could minimize tail-chasing, I would be more than satisfied.

I cannot point to statistical specifics about how things have changed. I just feel like it’s better. The changes have been subtle. But subtly better.

This is what I can tell you with certainty:

Caleb’s school nurse thinks it’s fantastic. She, more than me, sees a marked change in Caleb’s numbers.
I don’t talk to Caleb’s school nurse much anymore. Caleb’s plan dictates that she call me with anything under 70 or over 200. We’ve gone more than two weeks without a call regarding blood sugars. TWO ENTIRE WEEKS! If we previously had gone two days without talking, I considered that a great success.
Caleb has fewer lows and I don’t find myself tail-chasing quite so much.

But this is what sealed the deal for me. We recently went to NYC to see Wintuk and went out to eat afterward. I totally guessed at his carbs. My guess was 140 in total.

One hundred and forty carbs. All at once.

Caleb’s meals are typically fifty to eighty carbs. One hundred and forty is almost certain to be a very bumpy ride at best. Consistency works with diabetes and doubling a meal bolus usually does not.

This is how it went:

His blood sugar pre-meal was a nifty 105, it did not exceed 158 and there was no tail to chase afterward – he ended at a flat 109. There was no big spike from the enormous amount of carbs he took in and no plummeting low afterward from a huge tail of insulin from a huge bolus.

Caleb has indulged similarly on other occasions and it was never this straight-forward. Perhaps the planets were aligned this night and they will never be again. But my gut tells me that Apidra® is helping with Caleb’s D management.

I will leave you with this little tidbit:

http://twitter.com/#!/KxDxJ/status/14863935324815360

November 24, 2010February 26, 2011

Caleb is Thankful | Wordless Wednesday (sort of)

April 28, 2010February 26, 2011

Pumpiversary, Podiversary

First day of Pumping with OmniPod — April 24th, 2007, 1st day of pumping - OmniPod

Three years ago, on April 24, 2007, shortly after being diagnosed with type 1 diabetes, Caleb started pumping insulin. I remember this date as much as I remember his birthday. There were lots of smiles and celebration. It was a huge relief. It meant more freedom to eat, drink and be merry. It meant less shots and less pain. It meant me not having to put on a performance pretending that three 50 carb meals and three 20 carb snacks, precisely timed, included exactly what Caleb wanted to satisfy his appetite every day.

Since then, Caleb has used more than 450 Pods, has pumped more than 15,000 units of insulin and consumed more than 220,000 carbohydrates.

He’s also eaten pizza, devoured cupcakes, dined on Chinese food, eaten off-schedule, partaken in indulgent Thanksgiving feasts, and enjoyed goodies from his trick-or-treat bag. Don’t get me wrong – there’s a lot of healthy eating in between that would make Jamie Oliver proud, but those of you who understand diabetes appreciate how difficult eating pizza and carb-filled cupcakes can be. Pumping makes it easier for Caleb, if not just simply possible.

As demanding as managing type 1 diabetes is, I think often of what it was. I am thankful that Caleb has a pump available to him to make it less limiting than just 10 or 20 years ago.

Caleb pumps with the OmniPod. That choice was an easy one for us. Since the day he started pumping, at just 4 years old, he was able to deliver his own bolus’. He, himself has delivered each dose of insulin while at school, including preschool. From the beginning, he has helped change his Pod and just recently, at the age of seven, he has started doing Pod changes completely by himself.

In appreciation of allowing a photo of Caleb to be included in their 2009 annual report, Insulet has made a donation of $500 in Caleb’s name to the Faustman Labs at Massachussettes General Hospital. Dr. Denise Faustman and her team are doing such important work to find a cure for type 1 diabetes and I’m thrilled that Insulet has supported them.

Caleb also received an autographed poster of Kris Freeman with the inscription, “Dream big, Caleb!” As you can see, he was over the moon about it.

Caleb wrote thank you notes to both Kris and Insulet. Here is his note to Kris, spelling, punctuation and all:

Dear Kris Freeman,

I think you should be proud because I am a kid that looks up to you. Thank you for the poster. I was really excited when I saw you on it.

You are my inspiration because when I see you, I feel like I’m not the only one with diabetes.

I would always want an American to win a race, but I would escpecially want you to win! Good luck!

extra love From the big dreamer…

Caleb!

Thank you to all the pump manufacturers for making devices that make life with diabetes a little better for so many. Please keep working to make improvements. As great as pumps are, they are but crude replacements for a functioning human pancreas, and people who live with this every day deserve better.

April 21, 2010February 26, 2011

Super Bolus

First things first: this approach works for Caleb. It may or may not work for you. I am by no means suggesting that anyone should apply the following theories to their diabetes care. I am only explaining what I do for Caleb.

For weeks, Caleb’s most predictable BG of the day was pre-lunch. Without exception it had been in range. It was sensor change day and we were operating in the blind start-up period. No worries though because this time of day hadn’t posed an issue in quite a while.

It’s approaching lunch time so let’s do a finger stick. 289.

289?

Okay. Oh well. It happens. There was more fiber in his breakfast than usual and he was a little low at the postprandial check. Ah yes, hindsight is 20/20. Moving on. Now back to this 298 and we are getting hungry for lunch.

Super bolus.

John Walsh explains it as follows: “A Super Bolus is created when some of the basal insulin delivery is stopped or partially reduced, and delivered instead as additional bolus insulin on top of a normal carb or correction bolus.”

The intent is to get glucose levels back in range quickly without inducing hypoglycemia. Here is how Caleb’s super bolus went that day:

Correction: 1.50 units, plus

Meal bolus for 50 carbs: 2.00 units, plus

Basal for the next two hours: 0.70 units, equals

Total units delivered: 4.20 units.

Lastly (this is critical) turn basal to “off” for two hours.

The change in the timing of the basal insulin makes all the difference. Front-loading it and delivering it with the meal and correction bolus makes it act faster and all at once, thus bringing glucose levels back in range sooner. If left as basal, the end result will be the same, but it will take more time and hyperglycemia will last longer. The same amount of insulin is delivered when using a super bolus, it is only the timing that is different.

Back to life, start preparing lunch.

1/2 hour after superbolus: 169

Perfect. Coming down fast and lunch is ready, let’s eat. 50 carbs consumed.

1 hour after superbolus (1/2 hour after eating 50 carbs): 109

Excellent. The first time I tried this, I panicked a little at this point. A 109 an hour after a bolus that large is cause for worry. But his basal had been zero for an hour and he still has food in his system. Plus his basal will be zero for another hour.

DexCom had been calibrated with that lovely 289, which we confirmed after washing hands with a 288. DexCom showed him cruising between 85 and 100 over the next hour.

2 hours after super bolus: 89. Wonderful.

I know a bolus of that size is still hanging around in Caleb’s system beyond the 2 hour insulin duration that we use. However Caleb’s basal insulin has just now resumed. He hasn’t received any basal or other delivery of insulin for the last two hours. Any tail of insulin duration from that super bolus is required for his basal needs.

And it worked. He continued to hover with a nice flat arrow through the afternoon until dinnertime when a finger stick confirmed a BG of 98.

I invite you to read more of what John Walsh has to say about using a super bolus. He suggests its use for high glycemic foods or large intakes of food in order to avoid blood glucose spikes. I haven’t tried in those situations yet, but I plan to. He also speaks of pumps giving us the option to deliver a super bolus automatically. The thought of it gives me chills.

In what ways have you used the super bolus?

March 3, 2010February 26, 2011

Caleb’s 1st Complete Pod Change – Part One

Caleb has often helped change his Pod, but he has never done a complete change from beginning to end. There’s a level of dexterity necessarily to fill the syringe that fills the Pod. Considering the size of the needle used to do this, I have always interceded at this step. (I once stabbed the tip of my finger with that needle – it left an entry and exit wound and a half inch bruise from one point to the other. That thing is serious.)

But Caleb is seven now, and is showing more independence and responsibility in many aspects of life. Why not diabetes too?

When asked if he wanted to do the whole change, his face lit up, “really?”

With some expired supplies, our extra PDM, and his good friend Rufus, Caleb practiced. He did beautifully. I’ve always thought the hardest part of a Pod change is getting the bubbles out of the syringe. He listened to my instruction and did it with relative ease. Much better than my first time, that’s for sure.

Since then, the favorite thing to do in the house is to care for Rufus with bolus’, injections, bg checks and lots of love.

Here’s the video I put together of this monumental occasion. Stay tuned for Part Two.

February 17, 2010February 26, 2011

Our Happy DexCom Friends – video trifecta

As we began our CGM adventure with much trepidation, we were embraced, truly embraced, by our friends Bill and Suzanne.

I think the first time I “met” Bill was when he commented on Caleb’s low video and dubbed him a “Diabetic Ninja“. Shortly thereafter he named Caleb “Diabetic of the Day” in one of his own videos. Bill was one of the first people who found us through Caleb’s face on YouTube. I remember how Caleb smiled when he saw that he was in Bill’s video. As I’m sure was intended, it made him happy.

We have kept in touch with Bill and he and Caleb even have a friendly rivalry over their favorite baseball teams – Bill’s Red Sox v. Caleb’s Yankees.

Through Bill, we met Suzanne. Suzanne and I tweeted a great deal about DexCom. She answered my unending questions and understood my apprehensions about putting Caleb through another skin piercing process. She knew of Caleb and Bill’s relationship and asked if a video from Bill might help us prepare for our training. Of course the answer was, “yes”.

So Bill and Caleb made a deal to make videos for each other. Here’s Bill’s:

Suzanne also joined in the video encouragement:

To which Caleb responded:

Bill and Suzanne helped us so much through our CGM transition. They went out of their way to make these videos for Caleb and sent us many heartfelt emails and tweets. Thank you my happy diabetic friends!

“It’s all about your attitude!” Yours are fantastic, influential and even contagious!!

November 9, 2009February 26, 2011

“This is Caleb…” – the origin #dblogday

A little over a year after Caleb was diagnosed, when the fog had cleared, we had experienced all our “firsts” and things were more or less chugging along, my attentions shifted. The present was under control, now what about the future?

I made my first video. The intent was to bring attention to work being done to find a cure for type 1 diabetes. It turned into so much more than that. It entered me into a world I hadn’t realized existed, or at least one that I could be so much a part of.

Caleb, his face, his story, his personality, have all stretched across the world and brought me, and him, within reach of a support system that we would not otherwise have. I am so grateful for this unexpected byproduct.

This is my first work. When I made it, I could not watch it without crying. No matter how many times I watched it, I would choke up. Now when I watch it, there are two things that I note: (1) how much more effective my message could have been had I made it more succinctly (yes, it’s long – sorry), and (2) how my perspective has changed. The story is still true. The spirit of the message still resounds. But now I know the Caleb who has been living with diabetes for almost three years. He has adapted. He has flourished. He has shown me what perseverance is. Diabetes does not define Caleb. He just happens to be living with it. I can watch the video now without tears because I know that Caleb.

So, as this and other videos I have made begin, This is Caleb…

At least a part of him.

October 23, 2009October 9, 2011

She just wanted some milk.

Lila is four. Caleb was just shy of his fourth birthday when he was diagnosed. In both appearance and personality, Lila tends to be more like Caleb than older brother Colin. For some reason that has always made me think that if either Lila or Colin were to develop D, it would more likely be Lila. Not logical, but it’s what I have always thought.

Driving home from preschool the other day, out of the blue Lila says, “Mom, can I have some milk?” Lila has always enjoyed milk, but with her meals. She has never been one to drink much beyond that, and if she does, it’s water. For about a month before the light bulb went on that something might be up with Caleb, he requested milk. It should have been a reg flag, but I was clueless. “Icy, icy cold milk,” he wanted. Visions of him asking for it are etched in my memory because at the time, I just thought he was growing. But it was a telltale sign of diabetes that I completely missed.

So when Lila repeated Caleb’s request, a pit formed in my stomach. I started to think about the other symptoms. Frequent urination – nope, not at all. Lethargy – no way. Weight loss – I really don’t think so.

But I couldn’t get beyond the taboo milk request.

We arrived home, unpacked her backpack as usual, and sat down at the kitchen table. We’ve done it before, so it’s not a big deal – I ask Lila if I can check her sugar. “Sure Mom.” I prick her finger, the test strip soaks up the blood and the five seconds of wait, which seem like an eternity, begin. I’m telling myself this is not a big deal. She’s just thirsty. She has no other signs.

Then the number pops up. 257.

Well that was not what I was expecting. “Lila, let’s wash your hands.” “Okay mom.”

Another prick, another blood soak – error. Another prick, another blood soak – error. I’m trying not to panic. But I am now thinking of the logistics of calling my husband to come home. Do we go straight to the hospital or call Caleb’s endo? Who’s going to get the boys from the bus stop? Can we get her pumping right now? Will insurance drop us with two diabetics? And most of all, the flood of memories of Caleb’s diagnosis comes back to me in a wave. Lila is starting to get anxious with the pokes and now they hurt. How am I going to to get her through what lies ahead – shots, insertions, more finger sticks. I’m looking at her in the eyes, trying to stay calm, but my heart is breaking.

Another poke, another soak. 168. Not what I was hoping for.

I finally give her the milk she requested and the cookies from lunch she didn’t finish at school. We go about our normal routine although I have little ability to process thought. We are communicating, but I have no clue what I am saying because I’m still thinking about the hours and days and weeks and years ahead. I give it about fifteen minutes, pull out a completely different meter, and we do another poke and another soak.

104.

That’s more like it.

Just like that, life resumes to normal. My shoulders drop a little from the relief. I give Lila a big hug and she is oblivious to the future I envisioned for her over the last twenty minutes.

Just to be sure, I checked her sugar later that day, 84 and the following morning, 82.

All she wanted was a glass of milk.