JDRF Holds T1D & Me Symposium
Conference answers patients' questions about pumps, sensors, and diabetes management
by Margaret Nguyen, diaTribe
On January 12, we had the opportunity to attend JDRF's T1D & Me Symposium, which attracted many families with children who have type 1 diabetes. Here at diaTribe, we attend many conferences that focus on technical research topics and therapies, so this conference's emphasis on children and their families was a sincere privilege to attend. Starting at 9 a.m., the children went off for a fun day of activities and games, while parents went to talks and Q&A sessions with prominent scientists and clinicians.
The morning session started with a keynote speech by Ryan Reed, a young NASCAR driver who was diagnosed in 2011 with type 1 diabetes. He spoke about increasing diabetes awareness and helping others learn about how diabetes should not hold anyone back from accomplishing their goals. Dr. Bruce Buckingham (Stanford University) reviewed his studies on continuous glucose monitoring at a diabetes camp and also shared future research directions. Notably, he detailed plans to research an infusion set that lasts as long as a CGM sensor (seven days), enabling insulin delivery and CGM sensing at a single insertion site! Dr. Darrell Wilson (Stanford University) discussed his work with TrialNet, a screening project that evaluates the risk of diabetes for relatives of people with type 1 diabetes. If the screen results demonstrate a risk for diabetes or signs of diabetes, the family member is invited to participate in studies to prevent or treat diabetes at its onset. We were glad to be reminded of the innovative work coming out of Stanford, and we have especially high hopes that the efforts of both Dr. Buckingham and Dr. Wilson can help change the face of diabetes care.
In addition to the science at the meeting, we were moved to see parents helping each other with questions about how to manage diabetes in their families. This was especially true during a Q&A session with the pragmatic Dr. Saleh Adi (UCSF Children's Hospital, San Francisco) on "CGMs, Pumps, and Using Technology to Manage T1D." The questions were certainly detailed, but also focused on the common experiences shared by nearly every parent in the room. See below for a selection of questions and guideline answers from the session.
Blood Glucose Meters and CGMs
Q: Why are blood glucose meter readings so different? I will test my child and there is a different reading even within a minute of testing.
Dr. Adi: There is always some variability in the reading, and the higher the number, the greater the variability will be. The inaccuracy in a meter is approximately 10-15%*. The closer the number is to 100 mg/dl, the more accurate the meter is. A number like 300 mg/dl, by contrast, has a wider error. We don't have the tools to measure blood glucose perfectly every time, and we don't absorb food the same way every time. This is why we don't aim for blood glucose measurements between 80-120 mg/dl or 80-140 mg/dl for that matter; we aim for 80-180 mg/dl. I am very happy if we can stay between 80-180 mg/dl. However, even this range is variable: it depends on the child's family, the school, and their friends. You cannot be perfectly precise; it's impossible. Even if you knew the exact blood glucose level and you gave your child the perfect amount of insulin, the body's sensitivity to insulin changes each time you give it.
Q: What is your latest take on CGMs and are you advising patients to use them?
Dr. Adi: Yes, get a CGM. Use it all the time because it is extremely helpful. Even if you don't currently use it all the time, you can learn how to. Remember it takes time to learn how to use the CGM. Even if it measures your blood glucose perfectly every time, it takes time for you to learn how to interpret and react to a number. There is no question in my mind that if you can get a CGM you should get it. Get the CGM. Wear it; it works.
Q: My three-year-old son has had diabetes for two years, and when he goes low, his blood glucose just crashes. He wears a CGM all the time, but we still can't catch him before he goes low; is there a better way to manage his blood glucose levels?
Dr. Adi: It is very common for infants and toddlers who have diabetes to have their blood glucose drop dramatically and drastically. You should have him wear a CGM all the time and change the alarms for the low blood sugar so that you catch him when he is trending down [e.g., at 90 mg/dl], and not when he crashes. Each individual needs to modify his or her own alarms for their CGM.
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Charlie’s 12-year anniversary with type 1 just passed and I still know nothing about this diabetes and why it hates us so much. As if to remind us that it was its anniversary, diabetes unleashed hell on Friday. Charlie was stranded well over 400 for hours and even tipped the scale at 580. Susanne pulled Charlie out of school and started what became a wartime exercise in futility. It was one of the worst blood sugar days we’ve had in years. ...