Why not head on over and check it out.

“The [Diabetes HouseCall] technology gives me the ability to reach into their homes and guide them. It’s not as encumbering to my practice [vs. other technologies] and it makes it easier for me to check back on patients.”

- Stephen Ponder, MD FAAP CDE

Diabetes Self Management Magazine is typically found on the table in the waiting room of your doctor’s office. Read the entire article on page 15 of the current issue; July/August 2008.

We’re putting together an ad campaign to promote use of the GlucoMON real-time wireless monitoring system at school and we think a great message for this year is focused around leaving your logbook in the dust. So, here is your opportunity to come up with a few of those 50 ways by commenting here so that we can use them in the mygluco 2008 Back to School w GlucoMON ad campaign? One thing we know for sure beyond real-time text messages on mom’s cell phone and simply making life easier w GlucoMON is that most people stop keeping their daily logbook almost immediately after first use. That’s a great example of what we mean with ’so advanced it’s simple’. So for fun there must be at least 50 ways:

Here’s my lame attempt:
1) stick it down the garbage disposal one page at a time
2) leave it in the corn field and let the combine ‘integrate’ it back to nature
3) wrap it around an M-80 on the 4th of July
4) soak it in the sink and watch your numbers disappear before your very eyes
5) etc…

Let’s hear your ‘way’ no matter how lame and it doesn’t even matter if you know what a GlucoMON is or not. On your worst day when you’re tired of the D word, how would you get rid your logbook?

Well, Texas Lions Camp for Children with Diabetes is now officially over. I can happily report that NONE of our 411 diabetic campers experienced either severe hypoglycemia or diabetic ketoacidosis during their collective two week camp experience. The latter is now pretty routine, but the former makes me extremely happy to report since over the past few years we’ve been plagued with campers experiencing severe hypoglycemia. The problems with maintaining insulin pump infusion site integrity during camp resulted in several campers with early stage ketosis, but that was as far as it got. Frankly we are always overly prepared for these problems and conduct extensive training on how to best manage and prevent it.

Regarding prevention of severe hypoglycemia, I attribute our diligence with screening for “mystery boluses” as one reason for why we had no severe hypos this year. Before screening bolus histories a few years ago, a mystery boluser managed to induce severe hypoglycemia (as she later said, for “not being asked out to the dance”) by bolusing 20 units right after lights out. Had we screened her pump memory, we would have seen similar events in the past few weeks. Today, by aggressively reviewing insulin pump bolus histories, we seem to be preventing some (hopefully most) of these events. Years ago, we identified campers on injections who were probably insulin omitting and made changes to their doses to prevent these kinds of problems.

Parent’s day was packed. I had a lot of good questions afterwards. We were also able to distribute complimentary DVD’s with over 2000+ digital photos, 60 current songs, and over an hour of camp video. This was done once again by Mr. Mike Koch, a camper parent-volunteer who defines the meaning of dedication, perseverance and ingenuity as it relates to supporting the Texas Lions Camp Diabetes Camp program.

To a person, our camp med staff has learned a lot. Mystery bolusing is only one of the things they’ve learned. These hard working folks are dead tired, as I can directly testify based on how exhausted my two adult daughters are today, plus myself. I had to pull over to nap on the ride back home, in spite of a good 10 hours of sleep last evening.

I know we accomplished our three goals of camp. First, the campers had fun. Second, they were safe (as described above). Third, they did learn more about their diabetes. I heard it during check out when some campers came back with their parents to tell us good bye. My unofficial “fourth” goal was also achieved: that the professionals in the med staff learned more about managing type 1 diabetes.

Med staff has lived in a bubble the past couple of weeks. We’ve also been chronically sleep deprived and put to our collective physical limits. In spite of this, the main topic of discussion yesterday seemed to be about who is coming back next year and who will be telling colleagues and friends about what they learned and how they plan on being back next year. After 27 years, I’ve learned that about 25% will make good on these promises. Still, returning med staff is key to the success of our diabetes program. Still, I deeply appreciate the fact they have been here this week (or two) and gave all they could for the kids. To me, next year is another matter and is best left for next year.

Finally, is diabetes camping still relevant? After all, children with diabetes are not barred from participating in activities once barred to them simply because they had a chronic disease. Societal barriers to having diabetes are fewer than ever before. Does it make a difference to have camps like these? I have my own opinions about this, but I would invite yours. I hope you will let me know what you think.

In the meantime, after floating down the Medina River today, I plan on getting another good night’s sleep. A few years ago, I learned to take off the Monday after camp. The older I get, the smarter that decision seems. Yet camp is in my blood and I’m already looking forward to next year. But… don’t tell my staff!

Camp is in its final couple of days. Two weeks has gone by like a month to everyone working on the med staff. Everyone is very ready to return to whatever routine they had before, or better yet just a good night’s sleep. Med staff is also busy making final recommendations for “going home” insulin dose adjustments and what they’ll be saying to camper’s parents at check-out. I will address the parents from 10:30-12:30 on Saturday morning at “Parents Day”. We usually have a full house at the Rec Hall. It’s my chance to share how camp went the past week, and also provide some insight much as I have in this blog over the past couple of weeks. I also try and answer any and all questions parents have about diabetes care and technology. Basically, a diabetes update from a doctor who treats children with diabetes for a living and who has also lived with the condition for 43 years.

We must acknowledge our gracious host and sponsor, the Texas Lions League. Their vision over 40 years ago made this diabetes camp not only possible, but also unique as the first such camp that never asked for, or accepted, fees for children with diabetes to attend the camping program. Others emulate them now, but this camp was the first.

The running joke at Parents Day is that campers check out is between 12:45 and 12:46 PM! We have enjoyed caring for campers, but we are very ready to return them. Just like last week, everyone on my med staff has made the transition from novice to pro over the past week, as I assured them they would. We’ve had our challenges along the way as we always do, but we always persevere.

To a person, every volunteer on med staff has learned something about diabetes they didn’t know when they arrived here. Many have learned a great deal; and they work in the diabetes field already. I tell anyone who will read or listen, that this camp is the single greatest learning experience about type 1 (juvenile) diabetes that I have ever had. More so than any book, lecture, course or symposium I’ve ever participated in. I would hope these posts will serve to identify future med staff.

Our hosts, the Texas Lions League, hold their semi-annual board of directors meeting starting Saturday. Check out is nothing short of a circus environment, as hundreds of Lions and their families co-mingle on campus with 208 campers, 50 medical staff and 100 camp counselors and their core leadership staff. It’s amazing that any of us don’t get run over by all the cars!

In closing, I can only say that I’m fighting the good fight, I’m running the race, and I’m keeping the faith. But it’s not over for me yet, nor any of these children that we come here to serve every year. This camp will remain forever part of my life, and part of the lives of tens of thousands of children and young adults with diabetes. Besides my family, it’s one of the best things to have ever happened to me.

As a follow up to the last post, we have continued to uncover many campers with Mystery Boluses. Some are rather startling. In one case, as much as 50 units bolused through a pump, or repeated boluses totaling 50 units or more at odd times of the day, even during the middle of the night. Not surprisingly, lots of lows. When the pump history was reviewed for the past few weeks, I found several days where NO bolus was given. This camper’s pre-camp A1C was in the double digits.

The reasons for this phenomenon are undoubtedly complex. I wish there was more study behind the drivers of these behaviors, or what characteristics these folks have in common. Given the fact that more and more kids are going on insulin pumps, this will only continue to be a serious problem with potential life-threatening consequences. In my practice, I require patients considering pump therapy to go through pre-pump training that spans several visits. It’s not my intent to slow down getting a pump, but simply acknowledging the fact that these are sophisticated machines with potential for great good, or great “bad” if not started properly and educationally “maintained”.

I ask kids to sign a behavioral contract regarding their pumps. That allows me the chance to re-visit promises almost all insulin pump patients make before starting a pump. These vows are often kept as long as a New Year’s resolution by January 15th.

At camp this week, my Mystery Bolusers come from every corner of the great state of Texas. All are teens and “tweens”. I don’t typically see this behavior in the pre-teen age groups since most parents still play such active roles in their day to day pump management. I’ve contacted these camper’s diabetes doctors and shared our findings to determine the best course of action in each case.

My advice to parents of teen insulin pumpers is simple: don’t back off from your involvement in their diabetes care. Dr. Barbara Anderson has clearly defined the age of 16 years as the earliest age where greater diabetes self care independence is justified. To do otherwise invites problems like the Mystery Bolus and their cousins, the Omitted Boluses.

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.

First, there are the usual bumps and bruises found in a camp setting. Every now and then, there’s an occasional need to send a camper to the local emergency room for X-rays of a wrist or ankle. We’ve been fortunate in not having to deal with diabetic ketoacidosis, which is now pretty rare in our camp setting. That didn’t used to be the case. In my first few years here (the early 1980’s), campers would be streaming in with either 1) severe hypoglycemia or 2) vomiting with high urine sugar and ketones. We didn’t have blood testing for sugar when I first started coming to diabetes camp. Back then, we handed out Clinitest urine test kits to check for sugar spilled into the urine. We still use urine to check ketones today, but we have been switching to blood ketone checks over the past few years using the Precision Xtra meter.

The second form of business in the infirmary these days stems from insulin pump site changes, both scheduled and emergent. We don’t have these site change materials stationed in the cabins, but here in the infirmary where they can be tracked and schedules made for routine site changes.

Still, about 25% of the site changes are for accidental pull outs from vigorous activities or as a result of tape separation in the swimming pool. For site changes, we assign an experienced insulin pump trainer who can operate any of the available pumps we support here (Minimed, Animas, Deltec, Roche and Omnipod). Often, there is a crush of campers in for site changes several times each day. This week, 95 out of 208 campers use some form of insulin pump. Last week it was 101 out of 203 campers.

The third form of infirmary business is for the large number of medications (prescription and non-prescription) dispensed during the day. Anything from ADHD to asthma meds to thyroid pills. The campers are brought in by their program staff counselors and lined up to get their meds as needed before meals and at bedtime as prescribed by their doctor at home.

Finally, the infirmary is the hub for the medical staff. All our charts and most of our equipment are stored here. Team meetings often happen here as well. We’re hoping the Lions will build an expansion to the infirmary soon since our present storage area is in a separate location which we have to routinely transport items to and from across camp as our stocks become depleted over the course of the week.

You don’t get over 200 kids from 8 to 15 in one place and not hear some pretty interesting and outrageous stories about their diabetes. Most of the time, kids are repeating what they hear (or at least their understanding of what they hear) from their parents or doctor. Here are a few examples.

Yesterday evening a girl was changing her pump site and reservoir in the infirmary. When I asked her what insulin she uses, she said “Novolog, because I have Humalog resistance”. This immediately caught the attention and a puzzled look from one of our diabetes pharmacists standing in the background. The girl went on to say that Humalog didn’t work in her pump anymore and when she switched to Novolog, which works fine. Well, I diligently researched to topic and came up with little on this emerging strain of “insulin resistance”. The structure of Humalog and Novolog differ by only a couple of amino acids and are clinically indistinguishable.

The most common reasons for “insulin resistance” in a perfectly healthy, lean young girl with type 1 diabetes is going to be under dosing with insulin, followed by use of outdated or heat-damaged insulin. Insulin that may have been frozen will also not work and give the appearance of insulin failure. There is a known cause of resistance to insulin due to the presence of antibodies in the blood which bind up the insulin molecules and delay their release to tissues. I’ve not yet heard it used to explain “Humalog resistance” in the presence of full Novolog sensitivity. Needless to say, this girl and her family found insulin that worked for her even though the rationale might be imperfect or maybe even flawed.

The other evening at supper, Erica, our chief dietitian, was approached in the dining hall by a little boy with the following story: “I have a chemical imbalance in my head and can’t eat foods with certain textures”. Erica asked him “what textures do you mean?” His reply: “spaghetti, green beans and broccoli”. Guess what just happened to be on the menu that evening that night? Erica simply said “You want to exchange your carbs, don’t you?” “Yes” he promptly said.

Another little girl came up to tell Erica about her “lactose intolerance”. Erica gathered some more information about her situation. : “White milk makes me throw up” she said. But when she was asked about ice cream sandwiches, chocolate milk, or strawberry milk (all have lactose of course), the little girl replied: “those are fine. They don’t make me throw up”. “So”…Erica said, “you just have white milk intolerance, right?” “Yeah, that’s right”, she said.

It’s these stories, straight from the mouths of campers, which always make interesting, funny, and never dull. We can’t make this stuff up!

First, we look at the units or insulin per kilogram body weight per day. Any camper who exceeds 1.5 U/kg/day is considered at risk for being on an excessive insulin dose. While this is not always the case, it acts to triage campers into higher risk groups that we can study further.

Second, we ask if the camper has had a severe hypoglycemic event anytime in the last few months. An episode of severe hypoglycemia within the last month before camp starts is especially worrisome and somewhat predictive that such a problem could happen while at camp, UNLESS steps are taken to prevent it.

Third, if the camper is in total charge of his or her own diabetes, this is also a huge red flag. There is a pattern that some physicians fall into as far as insulin prescribing goes. It goes like this: when blood sugars are constantly high, increase the insulin dose. However, if the reason for the high blood sugars is the PERSON, there is little difference changing the dose will make. Often, more is discovered by reviewing the meal plan or who oversees the management (if anyone).

I explain to the med staff that in order to understand the problems with a camper’s blood sugar control, you must know the PERSON first. As I say almost daily, insulin may keep persons with type 1 diabetes alive, but how they balance their lives (food, activity, stress, consistency) determine how truly well controlled they are. It’s all about CHOICES made.

In the end most of our campers with severe hypoglycemia may be placed in too great a charge of their diabetes care. This lack of shared responsibility with parents or other responsible adults is fertile ground for problems such as insulin omission, no adherence with a meal plan, and general lack of attention to any details in diabetes self care.

When non-adherent campers arrive into the controlled environment of diabetes camp, they get the “prescribed” dose. The results can be precipitous drops in blood sugar in the first couple of days. We have learned to identify the “red flags” that suggest these problems will happen and proactively adjust the regimen to prevent such a problem before it can happen.

Parents are advised to know these red flags. They can prevent trips to the hospital or emergency room.