It’s not yet mentioned on Insulet’s site, but according to this report, the strips are now approved. It’s nice to be hearing so much from the FDA in 2012. It’s like someone woke up!
Happy holidays to all!
Adding to our tradition of making insulin vials for each year Caleb lives with diabetes, we have our 2011 creations along with some OrnaPods.
To close out this little chapter on Pod changing, we made a video of Caleb. In an effort to shorter the video’s length, it’s shown in double time, thus the crazy helium voices. I still cannot watch this without laughing.
As a comparison, here’s one of Caleb’s older videos – him helping with a Pod change about three and a half years ago at the age of five. It’s not double time, but he does have a cute little lisp.
Thanks to Jess for making me aware of the Caleb impersonator. Hopefully YouTube will address it soon and have the videos taken down.
I need to come clean about Caleb’s post. While his statements are accurate, I think they may be misleading regarding how much he is currently doing in his care.
From the beginning, he has enjoyed being involved in the Pod change process, but it’s always been my responsibility. Certain steps require a level of dexterity that a four year-old does not yet possess, so he hadn’t been able to do it entirely by himself. There was a point where he got close; he did a Pod change almost entirely on Rufus. I just needed to help him get the bubbles out of the fill-syringe.
In general, Caleb’s priorities have been elsewhere – like piano, baseball, reading, swimming, etc.
But then he expressed his worry about the future. For that reason alone, he has been changing his Pod, particularly on his back, by himself for the past couple of weeks. He’s improved each time and now he’s got it. Bubbles and all. He’s no longer worried about caring for himself when he grows up.
As he stated in his post, he’s taken the initiative to start a journal, but other than the Pod placement, this journal is mostly non-functioning. I’m still in charge of all the dosing decisions. He does count carbs, but not exclusively by himself. Since the day he started Podding, more than four years ago, he has checked his own sugar and input his carbs and bolused. But again, not exclusively.
Here’s the thing. Caleb has been living with diabetes at the ages of three through eight. He has a lifetime ahead of him of doing all these things and most of that time will be doing them by himself. I want him to be independent. I want him to be autonomous. I want him to be proud of his abilities. But I don’t want him to burnout from the monotony and burden of the “daily grind”. While he’s a child, it’s my responsibility to do what I can to avoid that.
So where is the balance?
I’m not sure.
So far my approach has been to let Caleb lead the way. Over these years I have introduced responsibilities to Caleb and he has either embraced them, or attempted them and lost interest. If he loses interest I don’t push it. I just try again another time.
It’s helpful to know what other kids his age are doing and perhaps more so, what kids a year or two older are doing. It helps me understand what is reasonable to expect. It’s an ever-evolving process. For the most part, it’s been easy to see what Caleb is ready for and each year he takes steps forward.
So back to this Pod changing thing.
Caleb being able to change his Pod 100% by himself is huge. I am elated that he is doing it. Not because it’s one less thing for me to do, but because it is important to him.
But each time he has done it, I have worried about the novelty wearing off. I don’t want this to become a burden. I don’t want him to get tired of the daily grind at the age of 8.
So we talked about it. It was a good conversation. Very light. Very matter of fact. We agreed that we can take turns. I’d like him to keep doing it so he remains comfortable with it, but maybe once a week or twice a month. I don’t want him to feel like it’s his job exclusively. When he ends up always doing it, it will be because he chooses to.
At least that’s the plan for now.
Caleb is not only taking over his own diabetes care, now he’s taking over this blog. Here is his most recent writing essay from his summer work:
Now that I can take care of my pod changes by myself I am happy. Now I don’t have worries about when I grow up. I do feel a little sad because I don’t know what Mom is going to do. I am also proud. Mom is proud of me too. I feel good that I can change my pod.
I am starting to make the decisions and deal with diabetes on my own. I count my carbs and I bolus. I have also started a diabetes journal. It is as red as a blood drop. I keep track of pod placements, blood sugars, and carbs. I keep track of time too. I get the information from the pod controller. I am going to use the information to change my basal if I go low or high at a certain point of day. For pod placement I make sure that I don’t use that same spot too soon.
Watch out diabetes. HERE I COME!
Caleb recently shared some things on his mind. It was sad to see him upset, but I was more grateful to know his feelings. It’s been something I’ve fished for many times unsuccessfully. I think it has a lot to do with Caleb’s maturity; he’s beginning to not only formulate these thoughts, but also express them. Even so, I’m not sure when or if they would have come out if not for the You Can Do This Project, so again I give my applause and thanks to Kim.
If you missed the video from my guest post at What Some Would Call Lies, here it is:
Speaking of Kim, while in Florida, in between sessions with a rare moment to “hang” with Kim and Sara, I turned to Caleb and said, “Do you know who Kim is?” Since I’m the one who “knows” these people and Caleb has only a peripheral understanding of whom each is, I tried to make correlations for him whenever I could. I was pleasantly surprised at his response: “Kim Vlasnik?” My reply, “Yes, but do you know what she started?” A pensive pause and then, “Oh, the You Can Do This Project?” Yes sir!
The other day when it was time to change his Pod and we realized it was the back’s “turn”, I asked Caleb if he wanted to do it by himself. He eagerly agreed. Despite the worries he expressed in the video, he was fairly confident. He wasn’t sure that he could actually apply it to his back though, so I suggested doing a trial run with the adhesive backing still on. He did this. Easily. His confidence was boosted. A few moments later, the whole thing was done and he was literally bursting with pride. Okay – not literally bursting – but that’s sure what it felt like.
He was disappointed that we didn’t capture it on video. We did, however, capture his reaction immediately afterward. My only coaching to him was to be enthusiastic like Bill is in his videos (and in real life too for that matter). The result is that it comes across a little scripted, but it isn’t. This is what burst out of him when I said, “action.” He was, and still is, so happy he was able to do this.
Fear one conquered!
Caleb has been using the DexCom Seven Plus continuous glucose monitoring system since September of 2009. For quite a while he used it without any skin issue whatsoever. After about seven months of use (or at approximately the time that this picture of Caleb was taken, and yes, that is the only tie-in of this post to that picture, but I didn’t want the next picture to be the one that you are first greeted with for obvious reasons) things started to get a little tricky.
His skin started to react and frankly, it was nasty.
It was also heartbreaking. This tool which provided such valuable information, and comfort in otherwise stressful times of blindness, was working wonderfully but for this acid-like burning of Caleb’s skin.
My heartfelt thanks to so many of you who gave me suggestions. I don’t think I can remember all of the things I’ve tried over the last six or so months. Here is a list of many of them:
- Wipe the skin really, really well with alcohol to clean away as much of your skin’s natural oils as possible
- Use anti-bacterial soap
- Apply Benedryl spray/gel/cream on the skin before placing the sensor on
- Apply IV3000 or similar tape on the skin before placing the sensor on
- Apply Bard’s Barrier Wipe
- Apply Cavilon Barrier Wipe
- Apply Skin Tac Wipe
- Apply IV Prep
- Apply Skin Prep
- Any combination of the above applications
- Place a cotton round under the sensor to absorb moisture
- Dry the adhesive after showering/swimming with hair dryer
One time I placed IV3000 on his skin, then the sticky side of another piece of IV3000 to the sticky side of the DexCom sensor. It took quite a bit of coordination to then apply tape over the sensor with the inserter still attached to be able to adhere it to his body. As desperate as we were for a solution, I was glad this technique did not work.
We had some improvement at times. This picture shows Caleb’s arm a couple days after removing a sensor. You can clearly see the oval shape of the DexCom adhesive on his skin. The area was less irritated in this case – mostly a big dry patch. Whatever we did though, Caleb would inevitably end up scratching and complaining about the site and we would never get the full seven days out of a sensor.
I am hesitent, after so many unsuccessful attempts, to formally document that I do believe we have found a remedy to Caleb’s issue, for fear that the diabetes gods will strike me down for even daring to think that I might have something under control. Nevertheless, I feel behooved to share for those who may be going through the same torment that we have over the last half of a year.
The absolute, number one, critical element for Caleb is to ensure that his skin has been given adequate time to recover from the last site. His skin needs to be smooth without any dryness, otherwise he will complain of itching within hours, even minutes of putting a new sensor on.
Assuming we are dealing with healthy skin, I do the following:
- Clean the area well with an alcohol wipe
- Apple a barrier wipe on the area, careful to leave a small spot unbarriered for the insertion (I found when I wiped the entire area including the insertion, Caleb would get site infections)
- Cut a small hole out of a piece of IV3000 (or Opsite Flexifix) for the insertion and apply to the site
- Repeat the above step so that there are two layers of tape (this was the last piece of the puzzle that seemed to make all the difference)
- Cut the DexCom adhesive down on all four sides to minimize the adhesive surface area
- Soak the DexCom adhesive with a Skin Tac wipe then apply the adhesive to the two layers of tape, careful to place the insertion spot over the open area
- After insertion, apply the Skin Tac wipe to the top of the adhesive to seal it
- Dry the adhesive after getting it wet with a hairdryer whenever possible
I’m not sure which part of the above steps is actually resolving the issue or whether one or more of the steps could be elliminated; I’ve recenty skipped the barrier wipe and seem to have equally effective results. For all I know maybe he’s just simply gotten over it and none of the steps are doing a darn thing. If I muster the courage to apply the tape directly to his skin, I’ll report back. I expect that won’t be for a while though. In the meantime, we’re enjoying the heavenliness of his smooth, itch-free skin that’s revealed when we remove a sensor that’s lived its expected lifetime.
Please be kind, diabetes gods. I don’t mean to taunt you. Rest assured, you are still keeping us on our toes and I know we will never be completely in control. 🙂
Here’s a nifty resource from OmniPod which includes some of the above plus additional adhesive tips and suggestions. It’s intended for OmniPod, but the ideas are transferrable to other products as well.
The 100th day of school is upon us and Caleb was tasked to collect 100 small things in a non see-through bag for his classmates to shake about and guess its contents.
Caleb picked OmniPod batteries.
Each Pod has 4 small batteries. Getting the batteries out of Pods is not necessarily a speedy process. This all lent nicely to doing some math.
- How many Pods do we need to pry open to get 100 batteries?
- We have 36 batteries. Have we collected more or less than a quarter of what we need? A third?
- We’ve opened 12 Pods and have 48 batteries. What percentage of completion have we reached?
- We have 76 batteries. How many more Pods do we need need open to reach 100?
- And so on and so on.
It was fun! Who knew Pods could be such a useful math tool?
UPDATE FOR UST400 CAN BE FOUND HERE.
I was asked to give a review of the OmniPod® insulin management system for a Facebook group for parents of children with type 1 diabetes. The group is looking to maintain user reviews for each of the pumps available to help those who are trying to choose one for their child. I am honored to be asked, and happy to oblige.
My son, Caleb, is currently 8, was diagnosed shortly before turning 4, and has been using the OmniPod® system for nearly four years.
When we were choosing a pump, the options presented to us were Cozmo, Minimed and Animas. After reviewing each of their features, one did have a stronger appeal than the others, but for the most part I felt that the functionalities of the pumps were all very similar. We just needed to decide which nuances suited our lifestyle and personalities best.
Then a friend told us about a “new” pump – the OmniPod®. The system includes two parts – the handheld PDM (personal diabetes manager) and the insulin pumping Pod. These two devices communicate with each other wirelessly.
The obvious differentiation is its tubelessness. We love that. Though Caleb is always attached to a Pod, he doesn’t have to carry around a larger device on his person.
- Caleb can swim and bathe without insulin disruption. He swims daily and at length during the summer. I don’t have to compensate for missed insulin while he swims. Although not advised, he’s also enjoyed our hot tub with no adverse effects.
- Caleb can play sports without insulin disruption and without worry of damaging an expensive device. At the ripe old age of 8, there is yet to be a sport where the Pod has been a concern beyond sliding into a base every once in a while. Even then, it’s not a big concern.
- He sleeps without worry or even real awareness that he’s wearing a pump.
- I can separate the PDM from him. This is extremely helpful when I’m trying to analyze data, download information, change settings or even just bolus him. As the manager of his diabetes, it’s nice to not have to try to physically keep up with him to work the mechanics.
- I like that the separation lets me take a small burden off of him. If my carrying the PDM gives even the slightest illusion that diabetes is a little less part of “him” while he’s still young, I’m glad to have it.
- To communicate, the Pod and the PDM must be within a couple feet of each other, but it takes less than a second to establish the connection. For example, Caleb checks his blood sugar and administers his bolus at school before lunch in the nurse’s office. Once he hears the “beep beep” that the message of the bolus has been sent, he’s free to go to the cafeteria and leave his PDM with the nurse even while the bolus is still being delivered.
- He has no worries when going to the bathroom.
- The tubelessness allows for some discretion. With a Pod hidden under clothing and the PDM appearing cellphonesque, it doesn’t raise too many eyebrows. Discretion is not a major concern of mine, but as Caleb matures, he may feel differently.
Beyond the remoteness…
- I love, love, love the auto-insertion. I have never inserted any other pump site, so they all may be just as simple, but I love that the whole change process is so easy that Caleb can even do it himself.
- The integrated meter is great. I love the new ZipWick™ strips too – they need very little blood.
- I also have great appreciation for the method of bolus delivery. Bolus’ are delivered somewhat slowly – in .05 increments. So if I made a mistake and delivered a bolus for an overstated amount (like the wrong number of carbs), you have a chance to cancel it before too much is delivered. I find that to be a good safety feature.
- We were able to acquire a backup PDM when the 2nd generation was released at a relatively low cost. Should something ever happen to his current PDM, we will only have to start up a new Pod with the backup PDM. There’s no worry about going to shots while we wait for a PDM replacement. We have yet to need the backup though (knock wood).
- As new generation PDMs are released, upgrading is not an overwhelming financial burden. When the updated Pods are made available, access to them will be as convenient as getting a new shipment of supplies.
There are two things that I think people considering the OmniPod should keep in mind –
- You cannot schedule a zero basal rate. When Caleb first started pumping and had a significant sensitivity to insulin (less than 2U TDD per day), it would have been pretty nifty to be able to program a zero basal at certain times. The smallest basal increment is .05 units and alternating a zero and .05 rate in the wee hours of the morning, for example, would have been nice. We worked around it by setting temporary basal rates of zero and his insulin needs grew rather quickly once he started pumping precluding the need for a zero basal. Nevertheless, I’ve always felt that would be a good improvement.
- The IOB calculation (insulin on board) considers corrections only; it assumes that meal bolus’ are needed for carbs consumed. Because we have never known any differently, this has never been an issue. I am able to compensate easily with a little division by 2 or 4. However, I do appreciate that having the option of including meal bolus’ in the IOB calculation could be very valuable, particularly when you have become accustomed to using such a tool in your diabetes management.
Today the options have changed a little, but overall I still feel that all the major players, including OmniPod®, generally have the same functionality. Each has its specific strengths with their own appeal. The bigger decision may be whether to pump or not. If you’ve decided that pumping is right for you, then it’s just a matter of test driving the various models available to see what bells and whistles you like most.
I believe your mind, heart and perhaps most of all, your gut will steer you correctly. Only you know what’s best for you.
You can read more about our OmniPod® story here.
For an informative post on smaller Pods and DexCom integration, visit DiabetesMine.com.
Part 2 of 2
For about a week I saw Caleb’s blood sugars plummet multiple times after each episode of vomiting. I took advantage of the relief he felt post-throw up to get some concentrated carbs in him to help elevate his blood sugar.
But when my other kids have a stomach bug, the course of action is to ingest as little as possible to avoid more throwing up.
We don’t have that luxury with Caleb. We often have to do the exact opposite. Illness makes his blood sugars drop. We reduce his insulin dosing to avoid low blood sugars. Less insulin and/or dehydration causes ketones. The way to counteract low blood sugars and ketones is to ingest liquids and carbs -the last thing you want to do when you have a stomach virus.
But to avoid a trip to the ER, that’s exactly what we must do. Force carbs. It makes an unpleasant situation exponentially more unpleasant.
So here is what I want for people living with diabetes who experience a stomach virus:
A glucagon filled, one time use, basal-delivering patch pump.
I seriously considered whether I had enough glucagon in the house to fill a Pod and slap it on Caleb, activating it with our backup OmiPod PDM. Why can’t something like this be made available via a quick trip to the pharmacy as opposed to an ordeal at the ER? I’ve heard women tell me they used a similar device when they were pregnant to infuse labor inhibiting drugs. Why not one for glucose?
With the benefit of a home glucose drip, Caleb’s recovery would have been much more comfortable than what it was and what it would have been in the ER. With a steady flow of glucose, his bgs could be maintained safely without having to eat or drink. Insulin dosing could be increased to offset the glucose flow and reduce the risk of ketones.
Am I crazy? Does this at all appeal to you as a preferred option to going to the ER for a glucose drip?
On top of that, I want the ability to infuse saline into my son. Yes – I want that at home. I am given the responsibility of infusing insulin – something that could easily kill him if not properly managed – with barely any training. I don’t think it’s too much to ask for a way to deliver saline to him from the comfort of his home. Does the ER really have to be the only option?
So I want a third pump – maybe another patch pump with a preset basal delivery rate that connects to a saline bag so that enough can be delivered. This one may be more of a stretch, but still not completely unrealistic, right?
People living with diabetes go through enough each and every day and a stomach bug shouldn’t be such an urgent, deathly situation. I think it’s within the realm of reality that it doesn’t have to be.
Thanks to Linda for trouble shooting my hair-brained idea with me and suggesting that even saline might be a possibility with an attachment of some sort.