Consumer Alert: Dexcom Recall

12 04 2016

Dexcom, manufacturer of one of the most widely used continuous glucose monitoring systems, has officially recalled its G4 and G5 Platinum systems. This follows notification of users by certified letter that alerts for high or low bg levels may not be heard. The letter pointed to speaker malfunction as the problem and promised to have the problem fixed soon. I know for a fact, however, that speakers are NOT the problem. Two months ago, I woke at 4am to multiple alerts on my phone–two hours of them, in fact. I was shocked that I had slept through them–I’m a light sleeper and that was a lot of alerts, one every five minutes for two hours! I was doubtful, so I called Dexcom. They were super professional and concerned, but they did what I feared they would. They suggested I slept through the alerts.

Two weeks later, I received the first of two certified letters informing that I was not alone. There had been hundreds of calls similar to mine–people weren’t “hearing” alerts. Dexcom suggested the speakers were malfunctioning and promised to fix the problem.

I was doubtful. I rely on the Dexcom Share app.–an app that works through the cloud to send BG readings to my phone. It is one thing if the Dexcom receiver speakers don’t work, but that should not affect the alarm on my phone app. The phone app alarms operate independently from the receiver my son carries with him. For instance, my son can have his receiver set to alarm when his BG drops below 80, but I can set my phone app to alarm at, say, 90 mg/dL. So even if the speaker is broken on his receiver, my phone app should sound an alarm regardless. I am convinced it didn’t do so the night I describe above, and I know it did not sound an alarm on March 14. I was in my office with my phone sitting on my desk when I noticed the text alert pop up on my iPhone. No audible alarm, though. I called school and spoke to my son. His receiver said 72, but he never heard the low BG alarm. Houston, we have a problem and it isn’t the speakers.

According to denizens of individuals on discussion boards, it seems these problems started occurring immediately after a software update. I can only hope Dexcom addresses the real issue and doesn’t go the route Toyota did when it had an acceleration problem caused by a flaw in software, but instead spent millions of dollars replacing drivers’ floor mats. Time will tell. In the meantime, we will use our Dexcom and set our clock alarm every couple of hours to ensure my son’s BG doesn’t go low overnight.

For more info on reported problems with the Dexcom G4 and G5 receivers, read here.





Summer Camp!

1 04 2016

Teen-Weekend

Ah, summer…swimming pools, vacation at the beach, and summer camp! For the child living with diabetes, however, summer camp isn’t so easy, and that is especially true of overnight camp.

Luckily, we have access to quite a few options in Virginia for both day camp and resident camp for children living with Type 1.

Camp Too Sweet: This is a camp exclusively for children with Type 1 and Type 2 diabetes, held at Camp Bethel near Roanoke, VA. It is run by Carillion Diabetes and Endocrinology, and staffs an on-site doctor and trained counselors. Activities include canoeing, rafting, hiking, swimming, horseback riding, and more. Summer camp will be held July 18-22 in summer 2016. Also check out their other weekend camps for kids, families, and teens. For more information, visit https://www.carilionclinic.org/diabetes-endocrinology/camp-too-sweet.

Camp Jordan: This also is a camp exclusively for teens with diabetes, rising grades 8-10. The camp is held at Makemie Woods outside Williamsburg, VA. It will be held the same week as Camp Too Sweet, July 18-23, and features similar activities. For more information, visit http://www.makwoods.org/camp-jordan-overview.html.

Kids for a Cure Club (KFCC): This is a day camp for Type 1s (no Type 2s allowed) for children in first grade through 12 years old. Located in Fredericksburg, VA and sponsored by Mary Washington Healthcare, the camp will be held June 20-23, 9:00-2:30. The camp is run by licensed nurses, all working in diabetes care. Visit http://www.marywashingtonhealthcare.com/images/2016_fiesta_kfcccamp_brochure.pdf to find out more.

Lions Diabetes Family Camp: This three day camp in Chesapeake Virginia is for families with a child living with Type 1, and will take place April 22-24. One parent is required to attend, and the weekend includes lots of fun activities, diabetes education, and more. Visit http://lions-of-virginia-24d.org/Diabetes_Camp.html.

There are many more camps in surrounding states:

 

 





The Monstering of Diabetes: A digital story

19 03 2016

This is a digital story I made as an example for a class project. I used iMovie and the internal microphone on my iPad to create it. 

http://youtu.be/JTkvwJG8WQs





Nut and Berry Chocolate Drops

22 02 2016

Low in carbs and high in antioxidants, these little treats are a favorite in my household. They are the perfect answer for a sweet tooth without sending blood glucose levels sky high. Each drop has about 8 carbs.

  
Ingredients

  • 1 cup Dark chocolate chips (I use Giradelli 60% cacao chips)
  • 1/4 cup whole almonds
  • 1/4 cup dried fruit (I use a mix of dried apricots, craisins, and raisins)
  • 1/4 cup shelled pumpkin seeds

Heat chips in the microwave for 1 minute. Stir and return to microwave for 30 seconds and stir. Repeat until chips are melted, stirring after each heating. Drop onto parchment or waxed paper with a spoon. Let set for 5 minutes. Arrange fruit, seeds, and nuts on each chocolate drop. Let set for another hour, or place in the refrigerator for 10 minutes. Enjoy!





The Big Business of a Cure

11 02 2016

The diabetes pharmaceutical industry is big business, and by “big business” I mean “big money.” Every year, Americans spend billions of dollars on insulin, test strips, syringes, meters, etc. I am fortunate to get my son’s insulin and testing supplies free of charge through our insurance company (because as much as insulin and test strips cost, they are still cheaper than hospitalization for diabetic ketoacidosis caused by uncontrolled diabetes). Without insurance, however, our monthly pharmaceutical costs would be in the $3000 range–that is how much the insurance company pays Lilly and Roche for our supplies; costs to us, lowly consumers, would possibly be more.

Given how profitable diabetes is for pharmaceutical companies, many in the Type 1 community doubt the earnestness of those researching a cure. They believe finding a cure would not be in pharmaceutical companies best interests because a cure would cut into profits. So I wasn’t surprised by the many, many negative comments that accompanied an article that showed up in my Facebook feed about Johnson & Johnson collaborating with small, private company Viacyte on its stem cell-based cure. One reader wrote “Hopeful but skeptical. It doesn’t pay to find a cure…” Another wrote “Taking bets that Johnson and Johnson has ulterior motives and will stall the research now that it is involved with Viacyte.”

Honestly, all that pessimism was disheartening and, as much as I hate to say it, made me feel a bit empathetic toward J & J. (That’s something because I am still reeling from Martin Shkreli‘s 5,000% price hike when his company Turing Pharmaceuticals acquired the patent for Daraprim, a drug that used in malaria, HIV, and cancer treatments).

Here are FIVE reasons we should all take heart and think positively about the Johnson & Johnson and Viacyte partnership:

  1. Johnson & Johnson was already a financial supporter of Viacyte, committing $20 million in August 2014 for the future right to evaluate transactions related to its stem cell trials (guess they exercised that right this week!)
  2. Viacyte comes out on top here, acquiring 145 patents and 565 pending patent applications belonging to Johnson & Johnson.
  3. Type 1 is personal for Johnson & Johnson. T1D runs in the Johnson family and Casey Johnson, great granddaughter of founder Robert Woods Johnson I, died of diabetic ketoacidosis (the result of blood glucose levels that are too high) in 2010. She stopped taking insulin.
  4. VC-01, Viacyte’s encapsulated stem-cell replacement technology, is already in phase 1 human trials and it is showing positive results. The FDA has expressed a willingness to fast track approval if all phases are as successful as anticipated.
  5. The VC-01 trial is being filmed for a documentary titled The Human Trial. Viacyte is giving filmmakers unprecedented access to trial participants, the lab, and the company’s research records. The film is backed by celebrities such as R&B artist Usher, and director/producer Lisa Hepner has plans to follow VC-01’s progress to its approval by the FDA. Lisa has lived with Type 1 for 22 years.




Riding on Insulin PA 2016

2 02 2016

Over the weekend, my son participated in Riding on Insulin, a snowboard and ski camp exclusively for kids living with Type 1 Diabetes led by pro-rider Sean Busby . The one day camp was held at Camelback resort in Pennsylvania, and is one of more than ten camps held internationally each winter. Accommodations were provided by Great Wolf Lodge Poconos, a big draw for the younger participants.

The camp began with a Friday afternoon orientation at Great Wolf for families–what to expect, how cold weather and exercise in cold weather affect blood glucose levels (BGs), reassurances that kids’ medical needs would be taken care of, and general get-to-know-us chat.

The next morning (at 8:15 am!), the 45 participants were divided into age/ability groups and assigned to one of five to six elite coaches–these are experienced coaches who are all familiar with T1D, many living with the diseases themselves. Junior coaches dispersed among groups to help with instruction. Junior coaches are individuals who have participated in past camps and are good enough skiers and riders to help with instruction.

The first part of the morning was spent learning techniques. The kids did group BG checks every half hour and elite coaches carried back packs filled with glucose tablets and other non-freezable glucose sources to treat hypoglycemia. Participants then took a lunch break, eating a camp-provided boxed lunch consisting of a turkey wrap (gluten free and vegetarian options were also available), potato chips, and an apple. Then it was back to the slopes! The second part of the day was spent skiing and snowboarding down the slopes.

Cole was a first time snowboarder, so he stuck closely to instructors in the training area (which still had a fairly long hill from what I could see in photos). He made it down the slope six times, the last time without falling! I’ve seen the GoPro footage and I can tell you that he took some pretty hard falls, poor kiddo. The kids all did BG checks every time they went on the magic carpet (a moving walkway–the steeper slopes have ski lifts). Cole’s BG stayed pretty high all day, unfortunately. We had a big snow the weekend before camp, and when Cole played outside, we pretty much skipped bolusing (that’s the insulin you take to cover any carbs you eat) and his BG stayed between 80 and 120 mg/dL–great numbers! But I guess learning to snowboard is not as active as sledding because at one point in the morning during camp, his BG was 347! We had done a 1:50 ratio for breakfast. For comparison, Cole’s usual breakfast ratio is 1:10. And if you are new to diabetes, that means you get one unit of insulin for every ten carbs you are eating. We had also set a temp basal of 60%, which means Cole was getting 60% less basal insulin–that is the insulin that drips continuously throughout the day to process the sugar secreted by your liver. Next time, we know to stick with our usual carb ratio and try the reduced basal rate only.

After skiing and boarding ended close to 4:00pm, participants and families gathered at Great Wolf Lodge for a buffet dinner and motivational talks from some of the elite coaches. Cole was excited to learn that one of the elite coaches hailed from Virginia. Unfortunately, Sean Busby was not present for the camp. We received an email that he would be there, but we didn’t see him and at the banquet, they said he wasn’t able to be with us. There was a national snowboarding competition on the mountain that day as well, so I suspect that kept him busy.

Cole gives the camp two thumbs up and is already looking forward to next year’s camp. He loved learning to snowboard (despite his bruised tailbone) and had a blast. I think it was great he was able to meet and hang out with other kids who have T1D–it allowed him to shed his self-consciousness about his disease for a day. Great job, Mollie and the ROI team!

As soon as I convert Cole’s GoPro footage to a format WordPress can handle, I’ll upload a video!

(disclaimer: I am reporting on/reviewing the camp based on my son’s and husband’s reporting–I, unfortunately, was stuck in the hotel room all weekend with food poisoning–Thanks Au Bon Pan.)

 





Snapshot of Type 1 Diabetes

21 01 2016

It happened again the other day. I was in a checkout line at the store when my iWatch sounded THE alarm, the loud one warning that my son’s blood glucose levels were low. I silenced the alarm as quickly as I could, but it was loud enough that the woman in line behind me heard it and took notice of what I was doing. She asked about the watch, and I showed it to her. I then volunteered that the alarm was from my son’s continuous glucose monitor. “He has Type 1 Diabetes,” I said, “and when his BG gets low, the alarm sounds. It’s a godsend at night.” She smiled with tight lips. “That diabetes is bad news,” she said. I agreed. “With all the video games and fast food,” she added, “I guess kids today just don’t stand a chance anymore.” The hair on the back of my neck pricked up. “Actually, my son has Type 1–Juvenile Diabetes. It’s an autoimmune disease. Nothing to do with lifestyle or weight.” I waited for her acknowledgement, but her face remained blank. I think I probably destroyed everything she thought she knew about diabetes. Mission accomplished!

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