For the past few years, Caleb’s been able to effectively carry his OmniPod PDM and other essentials in this: Contents and full post about this nifty little case can be found here. Contents of his updated bag mentioned below can be found here.
This year, he’s upgraded to something a little bigger. Things were a little cramped in the other bag. But the proportions of the bag to his body were good so we made it work. Now that he has a bigger body, he can handle a little bigger bag without being too clumsy. I wasn’t looking for a new bag; I just happened upon this. It’s by the make maker of the smaller one, and I figured it was worth a shot.
He carries about the same stuff in it. He uses his iPod to keep me updated throughout the day, and this case has ample room for that. He typically carries his DexCom receiver with his Tallygear cover in a pocket, but there’s enough room to stash it in this bag if he’s going to active and doesn’t want to carry it.
An unplanned advantage of this new bag is that it holds his new Nightscout rig perfectly in a separate, safe compartment!
Here are some excerpts from Dexcom’s most recent earnings call as posted on SeekingAlpha.com that I found interesting. These are specific to Dexcom’s cloud based platforms and the elimination of regular fingersticking, both areas of focus in development for G5 and G6 and having pending applications to the FDA. There was also reference to studies showing the accuracy of G4 as superior to Enlite, particularly in hypoglycemia. There was much more to the call including discussion of the financial impact of pediatric approval as well as Terry Gregg’s future with Dexcom, and I invite you to read the transcript in full at SeekingAlpha.com.
Terry Gregg, CEO
…our G4 PLATINUM sensor is significantly more accurate than Medtronic’s Enlite sensor. At this time most investors are aware of the work by Boston University where Dr. Steven Russell shared comparative data from patients simultaneously wearing the G4 PLATINUM and Medtronic’s Enlite with reported MARD of 10.8% for the G4 PLATINUM and 17.9% for the Enlite.
From the question and answer section:
…And then last question is you mentioned that on the progress with G5 and G6 anything in particular on the timing of those or when we might see a regulatory submission or studies? Thanks.
We run early phase studies on our technologies before we go to publication we are running early phase studies on several different versions of these products in the pipeline now. But as far as timing when I need to get share approved first and that is really our first foray into the Gen5 market that will be our first cloud-based mobile application where you can share your data with others.
I think once we get that approval that will trigger a lot of efforts and a lot of thoughts on our partners to how we think accelerate things and how fast we can go. So now those product lines are both in pretty heavy development right now.
…can you separate out the specifics of G5 like what exactly will be the benefit G5 over G4 and then the same for G6?
G5 is going to be focused largely on connectivity, mobility and convenience. And it will come out more than likely as a series of launches rather than one big launch with the end goal of G5 being a simplified application system at the end, combined with connectivity to a phone in addition to be in connected to your receiver and cloud-based data. We’ll go there in a series of steps.
That system will use the Gen4 sensors currently configure but with new algorithms that we’ve developed over the course of the past few years that will improve accuracy and reliability.
With respect to the Gen6 system that’s our first step towards doing a couple of three things, culminating some of the calibrations, getting the replacement claim or dosing claim so you can dose insulin and then ultimately eliminating finger sticks altogether.
Dexcom Share, that little cradle that will allow the transmission of sensor data to mobile devices, is still under review by the FDA. More news from Dexcom on mobile device integration: they have filed for a patent for CGM monitoring connected to smartphones. Here’s a snippet from the announcement:
The system could contact a doctor, caretaker, or parent by text or email in the event of a blood sugar drop. It could also trigger a push notification to the patient, either telling them to eat a meal, or just setting off a specialized alarm (an illustration in the patent shows a patient setting their low blood sugar alarm to “Low” by Flo Rida.) The system could also tie into the phone’s GPS and respond to low blood sugar by recommending nearby restaurants.
There are several difference between the photo of Caleb from Fall Ball (blue) and Spring Ball (green). One stood out to me more than the others. What stands out to you? (mine has nothing to do with baseball)
Yes, it’s the missing SpiBelt, and thus missing DexCom receiver. It’s around Coach Dave’s (dad’s) neck. Yet another example of the amazing range of DexCom G4!!!
Caleb has been using DexCom G4 for over five months. He used the Seven Plus system for three years prior to the G4. The G4 is a remarkable improvement.
The accuracy is significantly better. There are times that we confirm a DexCom reading with a fingerstick hoping that DexCom will be wrong, as it often was with the Seven Plus, but it never is. Okay, maybe once since Caleb’s been using it, it was off. True story. No joke.
The range – OH THE RANGE! It is unbelievable. Everything is different with the range. As the caregiver, the controls are now in my hands, where they should be. This allows Caleb a little freedom not to have to think about his BG constantly or have me constantly asking him what DexCom says, (as used to be the case, evidenced by this video).
Although not at the top of the list, the color screen makes the whole experience more pleasant.
Dexcom is also working on a new remote monitoring product, Dexcom Share. The product is a cradle that holds the G4 Platinum receiver and plugs into a power outlet at a user’s bedside. Data from the G4 Platinum are then sent via the cradle (using Bluetooth) to a nearby smartphone. That phone then uploads the data to a web-based platform, where it can be monitored by parents or caregivers on their own cellphones.
Why I am excited about this:
I’m the main caregiver to Caleb (aside from himself, of course). I’m on overnight duty. Traveling stresses me out. This will change that – completely!
This was a-ma-zing! Rather than be on the edge of my seat about whether the dinner underbolus was too conservative or if the fact that he started sweating three minutes into the game would make him plummet, I sat smiling at the pretty dotted line that kept updating me during the game no matter where he was on the court. He could play and I could monitor. Bliss!
I was CERTAIN I had no chance of the range reaching my bedroom from his. We are on opposite ends of the house, and unlike the basketball court, there are several walls in between. But it reached. Just over 50 feet. It didn’t consistently read from my nightstand, but within arm’s reach on top of my covers it got a signal ALL NIGHT LONG. Sa-weeet!
Then I thought I’d go hog wild and see what happened when he was in bed upstairs and I was two floors down in the basement watching Modern Family with Dave. Consistent signal. No more running up and down two flights to check and see what the extra songs of Just Dance did to his blood sugar. Holla!
We’ve had it just over a week. In addition to the amazing range, it’s simply slick looking and I could barely pry it out of Caleb’s hands for the first several days. He calls it “Hawkeye” after one of his favorite Avengers. He mentioned that Hawkeye’s “real” name is Clint Barton which is strangely similar to Clara Barton for which the diabetes camp where we spent a week as a family is named.
It’s probably too early to comment on accuracy, but I have to say, the experience has been very good thus far. It’s missed a couple of lows, but I think that’s due to the typical delay between interstitial fluid and blood. What we haven’t had are those riding along without a care in the world thinking everything’s wonderful until the fingerstick comes up with a 250 situations yet. I could really get used to this. I’m afraid I may already be used to this.
And did you notice my World Diabetes Day blue fingernail? 😉 I didn’t think so.
Last summer, Colin had a very exciting and fun week at TriRidgefield’s Kids Camp. For about a year before, Colin had great interest in running and that extended to triathlon training the more and more he heard about it.
He had no hesitation about signing up again this year. When I asked Caleb if he wanted to go, he said. “No, that’s Colin’s thing. My thing is baseball.” I could not influence him to change his mind.
Then his school held a Rod Dickson Kids Marathon training event and Caleb got the bug. His interest did a 180 degree turn. He was in for Kids Camp 120%.
I was thrilled to see Caleb excited about this discipline, pleased to see him and his brother share an interest and tickled to know that he would be under the tutelage of Coach Cliff Scherb, Ironman.
Cliff and Caleb both have type 1 diabetes, use the OmniPod and DexCom Seven Plus systems. They both have rocking buzz cuts which enhance their speediness. 🙂
Caleb had a fantastic week. He had so much fun. I was worried it would be a little too intense for him. He said the workouts were exhausting, but only when I asked. His consistent reference to his days at camp were “That was fun. Camp is so much fun. I can’t wait to go back because it’s so fun. Fun, fun, fun!!”
Since last year’s camp experience, Colin got a new bike. It is just about the only thing he got for Christmas this year. He saved up every penny that came his way and asked anyone interested in getting him a gift to contribute to his bike. After the first day of camp he felt validated in this investment. I wouldn’t describe camp as uber competitive, but there are some serious kid athletes in attendance. Colin made a great improvement this year over last and finished second in his age group.
Caleb didn’t place, but he did fabulously. I was so proud of both of them.
When I interviewed Cliff in 2010, I asked for advice on Colin’s behalf. He emphasized swimming for the younger crowd. I saw firsthand how important this part of the race is. Colin was not the fastest swimmer, but he came out pretty strong and made up some time in the bike and run. I could see how not having any prior swim experience other than goofing around in the pool impacted Caleb’s performance. He and Lila are now in weekly swim lessons! But I have to say that the improvement in his technique in just the one week of tricamp was astounding.
I cannot say enough about what nice, professional and encouraging people Evan (the camp director) and Coach Cliff are. The kids were great, the parents were great – it was a fabulous week all around.
It’s been said over and over what a terrific guy Cliff is, but you’ll have to tolerate me saying it yet again. He really is one of the nicest people I’ve ever met. This was not a diabetes camp, but Caleb and Cliff had that connection. Just knowing that there was someone around him that understood was a great influence to Caleb, and the fact that it was Cliff, a humble, kind and skilled athlete, made the experience even sweeter.
I was lucky enough to contribute to an article in Diabetes Forecast that featured Cliff that I invite you to check out. He talks about being an Ironman and living with diabetes and balancing the two. It’s really no joke – this guy is an expert when is comes to endurance training and managing blood sugars. Every time I talk to him I get a new tip. I am so blessed to have had so much direct exposure to that brain trust. If training of this nature is at all an interest of yours, please read Cliff’s story. He is the founder and principal coach of TriStar Labs in Norwalk, CT. We’re looking forward to cheering him on this August when he races in the Ironman US Championship in New York City.
When Caleb is at school, he keeps him PDM with him wherever he goes. Over the years the way he transports it from place to placed has changed. When he was younger it was the sole responsibility of the teachers to make sure that it was with him at all times they carried it. During this past year that organically changed to him being responsible for it – not officially, but practically speaking, he’s the one with it. The exceptions are gym, recess or any other event that requires him to be active. The teacher is still responsible for it in these cases
When he was in preschool, we used a hard-drive case to keep his PDM and essentials safe. When he started elementary school, his regular OmniPod® case was carried around in a cinch sack. That was kind of big, although not bulky. His school nurse suggested one with an NYY symbol, so that made it “cool”.
Then last year when we were in Florida I found a little bag in the golf supply section of the ESPN store of Downtown Disney. I liked it because it seemed cool and a little more mature. It’s like a mini back-pack. The fact that it opened from the top instead of like a notebook seemed a little awkward. I kneeled in the store and assembled all of Caleb’s necessities in it to give it a test drive. It seemed do-able, so we gave it a shot.
It’s the only bag he’s used since and we currently have no intention of switching. It’s just the right size to hold everything he needs. It’s sporty and somewhat “hip”. We’re on our second iteration since the first was getting worn out.
Here is everything that is kept inside the PDM case:
View of the case from the top when it’s packed:
Separately I carry his insulin, extra Pods, glucagon and his EpiPen (peanut allergy), wipes, syringes in a different case. The school nurse also keeps a glucagon and EpiPen in her office. As Caleb has grown, he carries the Dexcom™ receiver in his pocket about as much as he uses the SPIbelt™.
Caleb had his first communion this weekend. He was excited. A little nervous. I had to drop him off in the hall of the church with the other communicants about a half hour before the mass. Family waited in the church. Before dropping him off, Caleb checked his blood sugar. He was around 100 but with some insulin on board from lunch. We didn’t want a low during the next hour and a half, so he had a juice box. I gave him instruction to ignore DexCom unless he was 300 double arrows up or if he felt low. Otherwise, just relax and enjoy.
Easily said. Not so much done.
Each communicant is assigned a pew. He or she has a seat at the end with his/her family next to him/her. Caleb’s pew was toward the front on the right side. We had a very nice view as the children processed into the church. They all looped around a full time before taking their seats in their assigned pews.
We watched the children as they intently walked through the aisles. Some solemn, some smiling. All endearing. None saying anything to anyone.
Then Caleb turned the corner. My smile broadened when I saw him. He was walking as instructed, as the others did – hands in prayer, not too fast. As he got closer to us, he began to mouth something and sharply move his hands up and down a couple of times.
I only caught the end – “double arrows up”.
I felt a little badly that this was on his mind, but couldn’t help laughing at the animated way in which he was trying to communicate to us while also being respectful in church. Although he was passing by us to do his full loop around, he would be sitting next to us in just a moment. This tidbit of info could wait.
We have a still shot, which doesn’t quite capture the animation:
And an attempt to reenact the scene:
I shan’t name names, but I wasn’t the only one who laughed. Caleb completed his procession and took his seat. He told me “217 double arrows up”. I quickly gave a little bolus, he told us we were disrespectful for laughing in church, and the mass went on without further incident.
He was proud and happy at the end. I was too.
And DexCom was 98 flat.
Please note: it is not advisable to make dosing decisions off of a CGM result. I am not a medical professional and the postings made herein should not be taken as medical advice in any way, shape or form.
I think it was day six so my attitude about this oddly performing sensor was, “oh well”.
After I took it off I was examining Caleb’s skin and was rather in awe of the fact that it was looking really good. I brushed my fingers over the smoothness and felt a bump. It was the wire to the sensor. It had broken off not at the tip, but at the base so I was able to pull it out easily. I could see that the little silver end was intact and was confident that I had removed it completely.
I reported it DexCom. They took all the pertinent details, asked for a download of the receiver data and sent a prepaid package so I could return it.
I have since pulled another sensor from Caleb and verified that the length of the one that broke off was intact by comparing the wires.
I share this so that if you see a similar instance of ??? and/or sensor errors, you consider making sure the wire is removed completely, and if you suspect otherwise, seek medical assistance. I will likely examine every wire I remove from Caleb henceforth just to be sure.
Further to this end, I asked a couple of friends who I knew had similar issues to share their stories.
Yes, it happened to me a couple of times…Both times I was wearing the sensor in my arm, I inserted and got failed sensor warnings, and when I pulled the sensor out I could see the wire wasn’t attached. I called Dexcom and they told me the wire would eventually work its way out, but so far (this was months ago) both wires are still in my arm. I’m assuming now that they’re not going anywhere…
There were no infections and it didn’t cause me any pain, but I’d heard reports that a few people actually needed surgery to remove the wires (I guess because of infection.) The one thing that bothers me is that when the discussion with the FDA took place, I believe Dexcom claimed it had only happened rarely (I think under 20 occurrences), and I can guarantee that if it happened to me twice (both times I reported to them) it’s actually much more common than they’re stating. I assume it’s not all that dangerous or the FDA would be making a bigger deal out of it, but I don’t like the idea of there being wires permanently lodged in my arm!
Due to lack of real estate on Nate’s 2-year old body I thought I would try putting Nate’s OmniPod and DexCom sensor on his tummy. We normally use Nate’s tush for his pod and rotate the DexCom sensor back and forth between his arms. After I placed the sensor on his tummy I waited the 2 hours and put in the 2 bg checks and immediately received a sensor error, it was late, I was tired, I restarted the sensor. Two hours later, I repeated the process this time with success but the next day I just kept getting ‘off’ numbers and a lot of ???. I won’t lie I didn’t want to lose the sensor so I restarted once again only to repeat the entire scenario. I finally called Dexcom to report the problem, I uploaded the information and sent it to them for review and they told me to pull the sensor. I waited until Nate’s bath time to remove the sensor from his stomach and when I pulled it off there was no wire attached to the transmitter. I immediately called DexCom to report the problem and ask for some advice on how to handle the situation. I was completely blown-off by the CS representative and told that I must not have seen the wire fall out. I would have thought that too if it had not been for the hard, red knot where the sensor had been. I took Nate in to the doctor (for his regularly scheduled appointment) about a month later and it seems that the sensor is still in place but there in no sign of infection and we are hoping it just makes its way out on its own. Fingers crossed.
If you have had a similar experience, you are welcome to share it here.