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JDRF Holds T1D & Me Symposium for San Francisco Bay Area Families

Published: 1/30/13

by Margaret Nguyen

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.

Insulin Pumps

Q: My teenager has been using a Medtronic pump for many years. Is there a pump that teens are more successful with?

Dr. Adi: It’s really his or her choice. Medtronic works just fine. The Animas is okay. The Tandem t:slim is really cool, but it doesn’t have software for downloading data yet [Editor’s Note: Tandem’s web-based t:connect software is currently awaiting FDA approval]. The difference between Medtronic (176 or 300 units) and Animas (200 units) is how much insulin they can hold. If your child uses 100 units a day, then one pump might not last more than a day. These are the things that you will have to consider before you choose a pump.

Q: My child doesn’t like changing the infusion set. What happens if he leaves the same one in for more than three days?

Dr. Adi: The reality with these sets is that after three days the insulin doesn’t infuse as well. Either the insulin crystallizes at the end of the catheter, or your immune system reacts to the catheter and encapsulates it so that it does not infuse as well. There are some materials that are better than others. For instance, some metal infusion sets are better because they don’t cause the same reactions with the immune system as a plastic set.

High and Low Blood Glucose Levels and Their Consequences

Q: We all know that we must avoid low blood glucose levels and we know that over time high glucose levels are bad, but exactly how dangerous are high blood glucose levels? If my daughter goes high a few times a day, is she going to go blind? What are the key things I should pay attention to? Should I look at her A1c?

Dr. Adi: Truthfully, I don’t like the A1c at all. When patients come to my practice, that’s what they ask about first. But the reality is that the A1c is the average of all the numbers. The A1c was created at a time when people did not have raw data. You can have an A1c of 7.0%, with numbers that are very tight, 100-180 mg/dl, but you can also have that A1c with a range of 40-350 mg/dl. The first thing you need to look at is the raw data.

The complications come from tissues being immersed in high sugar concentrations all the time. The longer you stay in high sugar concentrations, the more protein glycosylation increases, and the more likely it is to have complications. We are finding that if you are at one extreme, either really high or low, it’s not really how high or low of blood glucose level that determines the severity of the complication, but the rate of decline or the rate of increase. If you measure 50 mg/dl, you should aim for increasing the blood glucose level to 90 mg/dl, not 300 mg/dl.

Complications in diabetes are related to many things. First, you have to have the genetics that make you predisposed to them. There are people who have an A1c of 11.0%-12.0% and blood sugar levels of 300 mg/dl and 400 mg/dl who have no complications. There are some genes that are protective and there are other genes that make you susceptible.

Many years of having high blood glucose levels will cause complications – over the span of years. However, you should still try to avoid high blood glucose levels. You should not say that it’s only a matter of time before complications occur; you should still try.

Q: I have a two-year-old child, and we are extremely worried about nighttime hypoglycemia. How often do you recommend your patients who do not have a CGM get up at night to check their blood glucose?

Dr. Buckingham: Two is a tough age; you should get a CGM so that you can use it remotely. I recommend that you check once a night, at around 2:00 or 3:00 in the morning. If you check and it’s not low, then you can back off a little. If there has been a lot of activity, or if you are concerned, then you should check. Remember though that the brain needs sleep. As a parent, you also become dysfunctional when you don’t sleep enough and are checking too often.

Dr. Adi: Just because you are not on a pump yet doesn’t mean you cannot have a CGM. You can get your CGM before you get your pump. As a rule, you should check around 1:00, 2:00, or 3:00 AM. Whenever you have a low reading during the day, you need to check that night. If you’re high before bedtime and you do a correction, then you need to check. If there’s some irregular activity during the day, you need to check.

Q: If I get a reading of 300 mg/dl at night should I spread out the insulin delivery so that I decrease the blood glucose level at a slower rate?

Dr. Adi: In the middle of the night I recommend that people should do an extended bolus for corrections, even just 30 minutes so that the drop in blood glucose levels is a little more gradual. Naturally, the body doesn’t like things to happen too fast. For anyone who has diabetes, the body’s reaction to a fast drop in blood glucose levels is similar to having a low blood glucose level.

Keeping Detailed Records

Q: What level of involvement should we expect from our endocrinologist?

Dr. Adi: You should expect everything from your endocrinologist. I do not rely on the A1c. You need to look at the numbers. Your endocrinologist should look at your pump, download the data, read the data and then give you an adjustment. Children change all the time; I’m always tinkering with numbers and finding ways to improve them. Your endocrinologist should push for a CGM and then look at the CGM data. It is extremely time consuming but that is what it takes. You should have someone who knows about the physiology of your child, and then have that person teach you about the physiology of your child, about what insulin and glucose do to the blood glucose levels, and get constant feedback. However, for your part, you need to keep the records.

Q: What do you expect to see in the logs?

Dr. Adi: Almost all the information that you can get about the things that matter to blood glucose levels – blood glucose readings, what you ate, the carbohydrate content, the level of activity, your insulin boluses, what time you go to sleep and wake up, etc. Over time you will begin to appreciate the trends. I don’t manage diabetes in kids; you do it. My job is to teach you how to do it, give you the tools, and give you feedback on how to improve.

Q: Is there proof that these logs and records make a difference?

Dr. Adi: I’m going to let her answer that for you. [A fellow parent turns in her seat and nods vigorously] It sounds like a lot of work, but the record keeping becomes routine quickly. Does it help? It absolutely does. Diabetes is about numbers, and if you’re not looking at the numbers, you can’t make the appropriate changes. Is there a specific paper from the literature that proves this? I can try to dig one up, but keeping track of these numbers is not that much work. If you monitor the data, you can see the trends yourself. We often consider a single number or single event, but the big picture, which we obtain from the logs, is much more enlightening.

* The current FDA and International Standards Organization (ISO) requirements mandate that at least 95% of points must be within 15 mg/dl of the lab value for readings under 75 mg/dl and within 20% of the lab value for readings over 75 mg/dl. 

During the JDRF event we also had a raffle for new subscribers. We want to thank everyone who signed up for diaTribe and congratulate Raman and Vana who were our raffle winners! They received a copy of Think Like a Pancreas by Gary Scheiner and Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle by Thea Cooper and Arthur Ainsberg.

What do you think?