The Human Trial–must watch

If there is one video that I could show that captures the daily agony … and hope … that I feel as a parent of a child with Type 1, this is it. Please watch. And if you can, donate, not just to the documentary, but to Viacyte. This is the game changer the T1D community has been waiting for.

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Technology update: 90 day CGM

Researchers recently conducted a 180 day trial of an implantable sensor for continuous glucose monitoring. Adult participants had a small incision cut into their upper arm where the sensor, a small  cylinder less than half an inch long, was inserted. The incision was closed with steril tape and a transmitter was worn in the arm where the sensor was inserted.

The results of the trial showed promise. The CGM caught 80% of participants’ low blood sugars. Only 10% reported discomfort with either insertion of the sensor or wearing the tube. And most liked the convenience of going three months between insertions. You can read more here
This kind of technology is not a game changer by any means, but it does offer a step in the right direction–that being to make medical care for Type 1 as unobtrusive as possible. 

Last year, I wrote about the insulin smart patch being developed by researchers at UNC. Stay tuned for an update on that soon!

Bad dog: the high cost of insulin

Over the weekend, my dog Ivy had swiped a “just-opened” vial of insulin and promptly deposited it outside in a hole she dug. By the time I realized the vial was missing and went looking for it, I was too late. The insulin was outside overnight and the vial was upside down in the grass and dirt. There was no way I could draw insulin from it without the possibility of contamination. What really stinks is that we don’t have an extra stash of insulin, so I’ve had to call the insurance company, explain the problem and get approval for an early refill. I am pretty fortunate. Others in my situation may have had to purchase a vial of insulin without coverage from the insurance company, which could potentially set them back almost $300!

There has been a lot of media attention given to rising drug costs and insulin is no exception. The cost of Humalog, the short term insulin my son uses in his pump, has increased 150% since 2009.  It is not unusual for adults living with type 1 to use three or more vials of insulin a month, especially if they are pumping and rely only on the short acting insulin. But, as a Washington Post writer discovers in her investigative series on the cost of insulin, weighing the cost of insulin against the benefits of new formulas suggests the increasing cost may not be justified.

Read more about this issue in the Washington Post.

 

Type 1 and College…yikes!

Thankfully, I have six more years to adjust to my son starting college. Six years to stop hovering and to get used to the fact that he is growing up and can’t live at home forever. As a mom, it’s hard to let go, but as a Type 1 mom, I harbor a lot of fear–what if his BG goes low overnight and he doesn’t wake up? What if his roommate hates him and tosses out his insulin? What if he has to take back to back classes and can’t get lunch? What if his professors are jerks (trust me, I know they exist)? What if this or that? A million things can go wrong when you are diabetic. 

This evening I came across this article about applying for disability services at college if you have Type 1. It in no way eases all my fears, but the article does help to know that my son can have at least some control over the many unknowns of going away to college when you live with Type 1.

Read the article here.

Diabetic patients lose in United Healthcare’s latest shenanigans

Yesterday, United healthcare, one of the largest insurance providers in the country, struck a deal with Medtronic, making the latter’s insulin pump the preferred pump of the insurance carrier. This means that diabetics who are insured by United now have no choice in which insulin pump they use, as United will cover only Medtronic pumps and supplies. This is unfortunate, as not everyone (including my son) want to wear a pump with tubes–tubes mean less freedom and less glucose control, as any pump that uses tubes for insulin delivery must be disconnected before bathing or swimming. I am thankful our insurance provider is Anthem, but I fear Pandora’s box has been opened and it is inevitable for other insurance companies to follow suit. If that does happen, diabetic patients are the real losers in a game played at their expense. Here’s an article commenting on the decision.

Consumer Alert: Dexcom Recall

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!

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:

 

 

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