Day 11 - Fifty-Seventh Camp Blog Entry
July 30th, 2008 by Steve
Just as solar eclipses happen every now and then, an unusual diabetes care event was discovered today at TLC. Sightings pretty much just happen at diabetes camp each year. It’s called the “Mystery Bolus” (MB for short). MB is only visible when someone else oversees or reviews insulin dosing in a person using an insulin pump.
Depending on your point of view, a pump is a versatile insulin delivery system used to fine tune diabetes control to near normal levels… or it’s a $6,000 weapon loaded with up to 300 units of insulin and worn on the hip of a child or teen. As a pump user myself for over a quarter century, I have some strong opinions about how pump therapy is best deployed in children. My views are reinforced each year at camp. Even more so now that pumps possess memory chips where actions and omissions can be downloaded or manually reviewed. How often do you review?
Now back to what happened today. Within a span of just 2 hours, the med staff reported three campers who’ve been Mystery Bolusing (also called hyper-bolusing) and hiding that information from the staff. Each of them had been experiencing low blood sugars at different times of the day. Several boluses were delivered during sleep, after lights out. I’m not talking about a few units, try up to 20. I always request my staff to review the bolus histories of all the pumpers in their care. This uncovered the problem (as it usually does).
The reasons for this secretive behavior are simply that: secretive. In my experience, I’ve often seen the following characteristics common to “hyper-bolusers”. These include 1) unrealistic expectations regarding blood sugar control (by child and parent, maybe even the doctor), 2) negative or even punitive responses to high blood sugars by the family (or even the child’s doctor), or 3) a desire to get a “rush” from low blood sugar, or even simply to draw more attention to themselves.
Mystery boluses are elusive and stealthy. They are the antithesis of the omitted bolus, but they can co-exist in the same person. They’re harder to detect since the extra boluses can easily be attributed to an additional meal or snack. There is no way to really refute such an argument unless access to food is controlled, as it is at camp.
One of our Mystery Bolusers did acknowledge that a 20 pound weight loss had been achieved by under-bolusing or skipping boluses over the past several months. A telltale signs of bolus omitters is the double digit A1C (often > 11%) in a pump wearer, although persons with any level of A1C control can engage in this behavior.
Last 5 posts by Steve
- Day 15 - Sixtieth Camp Blog Entry - August 3rd, 2008
- Day 13 - Fifty-Ninth Camp Blog Entry - August 1st, 2008
- Day 12 - Fifty-Eighth Camp Blog Entry - July 31st, 2008
- Day 11 - Fifty-Sixth Camp Blog Entry - July 30th, 2008
- Day 11 - Fifty-Fifth Camp Blog Entry - July 30th, 2008
July 30th, 2008 at 11:39 pm
Steve,
Thanks so much for this blog. It is a great way to “keep in touch” with what is going on at camp. It is hard to believe that in just a couple of short days, we will be picking Casey up from camp for the last time. She has so many fond memories of camp over these last few years. She always looks forward to meeting her “camp” friends each summer that come from all over Texas. Although she may not get to see these friends each day, she does keep in touch with them through facebook or myspace. A big thanks to you and all the other camp staff that make this camp so successful.
Casey is a typical teenager and doesn’t always make the right choices when dealing with her diabetes. Going to camp each summer “renews” her attitude toward her self care. Although she may not be quite ready to be totally independent, we know that by the time she goes off to college in two years, she will be armed with everything she needs to take great care of herself.
She has said many times that she wants to come back and work at Lions Camp. What a great opportunity it will be if she is able to give back to camp for all the great experiences that have been given to her.
Many thanks,
Cheryl Carswell
PS-
Your information on the “mystery boluses” is very interesting and humorous. I think Casey has had a few of these probably because she was sneaking her favorite snack again…and again…and again.
July 31st, 2008 at 7:24 am
I think your #3 characteristic common to what you call “hyper-bolusers” (a desire to get a “rush” from low blood sugar, or even simply to draw more attention to themselves) is simply idiotic and unsubstantiated by fact.
Not only are hypos scary and dangerous, but in my experience, it has far less to do with the desire to get any sort of “rush” or attention, and more to do the one very tangible reward for that behavior: a sweet treatment (regular soda, OJ, candy, etc.), which is often treated by parents as completely “off limits” under normal circumstances. With highly-restrictive dietary control placed on kids, who are in fact, just like other kids, and many find such experience annoying at the very least, and more realistically, obsessive-compulsive and far too controlling and therefore unrealistic.
Yet the basic philosophy adopted by the medical profession (particularly among diabetes educators) to “achieve desirable outcomes” is to “apply behavioral theories and strategies to maximize diabetes self-management” which has been the cornerstone of diabetes management. One result of this philosophy is that consequently, the “blame” for any secondary complications and/or problems associated with diabetes and/or diabetes management has shifted from the disease itself to the person who has it. Ironically, health care providers continue to ponder the higher-than-normal incidence of depression in patients with diabetes and almost universally conclude that better “educating people with diabetes” to adhere to an intensive regimen of MDI/CSSI and diets will somehow miraculously solve the problem.
Deb Butterfield (author of “Showdown with Diabetes”) once eloquently wrote:
“Perhaps a better test of diabetes ‘behavioral theories and strategies’ would be to follow 1,441 non-diabetic people over a period of 10 years as they try to comply with the regimen of injections, restrictions and uncertainty that is expected of the diabetic population. The conclusion would, I’m sure, be that the regimen itself is unreasonable and that the co-morbidities of depression, eating disorders and family dysfunction are, after all, only human.”
July 31st, 2008 at 9:02 am
In response to your well composed comments, I will say that I too find (and told the staff here on several occasions) that I don’t understand the “rush” issue either, but it’s what was observed and said by the camper. I’ve also heard it stated by other teens within my clinic from time to time. Teens often engage in experimental behaviors and find rationales which make little sense to older adults.
I have had this disease (presumably as you have) for decades (43 years for me). Nothing frightens me more than severe hypoglycemia. In fact, one of our former staff recently passed away from such an event at another location.
Failure to appreciate the patient’s role in management of the disease is a general observation of diabetic medicine in general that I share with you regarding the majority of practitioners caring for persons with type 1 diabetes.
I’ve supported poisitions which are similar to your swipe at DCCT. Recall the study never emphasized that 1) patients only between 13 and 39 were enrolled, 2) monthly physician and weekly RN contact by phone was what study patients received, 3) patients received free diabetes supplies for the duration of the study and 4) all potential enrollees were behaviorally screened for stability (in order to conduct a 10 year study). That last matter is what the average doc may not realize.
An insulin pump, like any other user operated technologies, is no better or worse than the person you wields it. This rush to place everyone on basal-bolus therapies is flawed for many children (for whom DCCT results were at best stretched to include).
I see significant rates of behavorial problems and mental illness in children with diabetes, but I also see patients with a host of other non-diabetes problems and they suffer with similar problems as well.
I’m glad you are checking in and respect every opinion. It’s what this process is all about.