Balancing Insulin Demands for Overall Health

I hesitated to comment on “diabulimia” as I want the media to stop using this term, for it seems to trivialize two very serious conditions–diabetes and bulimia. However, my valued colleague pediatric endocrinologist Dr. Steve Ponder has asked me to write a post, and that said, I certainly have seen the suffering that can come from being caught up in this vicious cycle. Manipulating insulin to control one’s weight or shape can become highly addictive. And for this reason, prevention is very, very important!

What steps can be taken to help prevent the addictive cycle of insulin restriction for weight control?

1. For parents, remain involved , in a developmentally-appropriate way, in your child’s insulin administration, especially over the transition to adolescence, when weight gain normally happens with the onset of puberty and physical maturation.

2. For persons with diabetes: Find a diabetes provider (CDE, nurse, nutritionist, physician) with whom you can talk about your frustrations with your body weight or shape. It is very important to have a diabetes clinician who will help you work on your two important goals: (1) healthy blood sugar control and (2) healthy weight. If you are not comfortable discussing your weight concerns with your diabetes clinicians, you need to talk with your parents or a counselor or social worker about finding a new diabetes team. Twenty-five years ago, no one understood how common and addictive this vicious cycle of insulin restriction for weight control is. That meant that in the past, this condition was not identified and certainly was not preventable. However, with today’s knowledge, it is critical to find a diabetes team with whom you can discuss your weight concerns and any fears about taking insulin which you may have (such as fear of weight gain, or fear of hypoglycemia). Persons with type 1 diabetes today deserve to be working with a health care team who will help them maintain optimal blood sugar control and maintain a healthy weight! Achieving these 2 goals is possible, although like everything involved in caring for diabetes. this is very challenging, a lot of work, and demands teamwork!

3. For diabetes clinicians: If you are unfamiliar with bulimia, or uncomfortable with eating disorders, or if you feel you need more expertise to help a patient who is struggling with insulin restriction for purposes of weight control, contact a psychologist, social worker, or psychiatrist who is knowledgeable about eating disorders. Also, for an excellent, brief and practical guide, read the chapter “Detecting and treating eating disorders in young women with type 1 diabetes” by Anne Goebel-Fabbri, Ph.D., a very experienced psychologist who works in this area at the Joslin Diabetes Center in Boston. This chapter is in the book PRACTICAL PSYCHOLOGY FOR DIABETES CLINICIANS (2ND EDITION), which I edited together with my colleague Richard Rubin, Ph.D. and was published by the American Diabetes Association in 2002.

Insulin pump therapy in children and teenagers never ceases to surprise me. Just when you think you’ve seen it all, along comes a new twist. The latest seems to be the “mystery bolus” and its first cousin, the “sleep bolus”.

Only Pumpers Would Appreciate This:

I’ve been seeing more and more kids and teens who have unexplained bolus doses of insulin when the devices are downloaded in the office. Often these occur during the middle of the night. While some may be recalled many are not.

Today I saw a young lady who had two episodes of severe hypoglycemia resulting in the parents stopping her pump until she came in for a check up. When the pump memory was examined, there were large boluses given within 30-45 minutes of the two events. The parents of this teen never check the bolus history, but were surprised (as was the girl, who has no evidence of secondary gain from this behavior) by these boluses.

Over the past year, I’ve seen other children do similar things.

One boy bolted up in his bed at 4:30 AM, dreaming that his mother had called him down for breakfast, then proceeded to bolus himself and fall back to sleep, only to be found severely hypoglycemic at 6:30 when the parents came to awake him. Beyond the sleep bolus, the “mystery” bolus is far more common.

At our children’s diabetes camp, the staff is obliged to check the bolus histories on all campers each day to verify dosing. It is now commonplace to find boluses that the child can’t (or won’t) explain. Many of these cases are teen boys who most likely are bolusing for contraband food, snacks or even sugar cubes. The pump enables this behavior in quite a perfect way.

There is often little parental review of the bolus history by many parents. The child has a ready supply of insulin to take for whatever extra food they wish to eat. It’s the “dark side” of insulin pump use that gets little attention. The message here is: know how to retrieve your child’s pump history. You may be surprised at what you find. And it may not be extra bolusing.

Often there are just as many skipped or missed boluses.

This brings me to my first rule of insulin pumping:

Pump Rule #1: The pump is no better (or worse) than the human being it’s attached to.

Never forget that.

In response to so many comments on this blog from people looking for help, here’s more information on my view of what’s involved in recovering from ‘insulin omission in the service of weight control’ (or “diabulimia”, but I dislike using this term a lot–as it seems to jargonize or triviallize this serious problem) takes a long time and requires that the person have a diabetes care team to work with who is nonjudgmental, and will pay attention to weight goals as well as BG goals.

The involvement of a mental health professional experienced with eating disorders and diabetes is essential, and these folks are rare.

However, the mental health provider must work closely with the diabetes medical providers, it truly requires a team approach. And this also involves the ‘family team’, so the significant others (family) of the person who is caught in the vicious cycle of insulin omission in the service of weight control must also be part of the recovery plan.

Often an in-patient hospitalization may be necessary in a facility experienced with this unique problem, and several do exist. However, I do not want to endorse any specific place, as the quality of care can change dramatically with changes in staff and funding, etc. A psychologist or social worker attached to a diabetes team can do the research needed to help a patient find an in-patient eating disorders facility that is experienced in diabetes and eating disorders and as close geographically as possible.

So I guess the bottom line for a person looking for help is to have an understanding and experienced diabetes care team for support and referrals. I truly hope that those who have shared their struggle will seek out the help they need to manage this dangerous behavior.