My 11-year-old son has had diabetes type 1 for almost five years. He has always exceeded our expectations in managing his diabetes until now. For the last four months or so, he has taken huge steps backwards by choosing not to check his blood sugars before he eats. When we asked him today why he is doing this, he simply replied, “Because I don’t want to mom.” We do not know how many times he’s deceived us. We know for sure of three occasions here at home because his blood sugars skyrocketed to an unseen number before (above the 600s mg/dl [33.3 mmol/L]). The immediate consequences of those choices have been horrible (vomiting, staying extremely high for hours, feeling miserable, ketones, not able to eat…etc.). He promised my husband and I that that would not happen again, but he lied because he did it again today. He also confessed that he’s done it in school as well. This situation concerns us tremendously. We have been taken away from him all kinds of privileges such as t.v., video games, movies (among others), but it doesn’t seem to do anything; he’s still exhibiting the same habits. What my husband and I do not understand is this uncontrollable need to lie not only about things connected with his diabetes control but other aspects of life, too, including school. We encourage our son not to lie. He doesn’t even see that behavior at home. We have tried our best to get our son to be a responsible child and he is, in many ways, but, so far, we have attributed this unwanted behavior to the psychological effects of having diabetes, how is he mentally and emotionally coping with this condition. Can you help us help our child?

Your son is going through a very common experience that is typical of most teens with diabetes. After doing everything “right” for so long, the emotional burden and never-ending nature of daily diabetes care has become overwhelming and burdensome and just too much to handle. This is so completely human and so understandable. He is not likely to be engaging in these behaviors to “lie” or to defy anyone. He’s more likely doing this because he is so sick and tired of the exhausting burden of this horrible disease called diabetes. It is also possible that his blood sugars have become more difficult to control because he is beginning puberty. This can lead teens to feel very frustrated that they are doing what they’re supposed to, but their numbers are running higher.

The response is not to remove things from him or to punish him or to accuse him of malicious intent. The response is to understand that his behaviors are typical, talk with him about the emotional burden of diabetes, and step in to help him. Take over blood sugar checking when he’s in the house. Administer his insulin for him when he’s home. Stop accusing him. Stop punishing him. He’s only 11 years old. If you take over his diabetes care for a while and stop the arguing and threatening, it is likely that he will slowly begin to feel better, and also slowly begin to take back some of the responsibility for his own care. Parents need to share in the daily regimen for their children, often until they are in their late adolescent years.

JWB
Additional comments from Dr. Stuart Brink:

This is extremely dangerous behavior and suggests pretty severe depression and anger as you have suspected. The only solution is counseling with someone skilled with kids and skilled with a chronic illness such as diabetes. You should discuss this directly with your diabetes team as they will know who to suggest. This will then also allow them to intervene with your son as well.

In the meantime, the main thrust must be that you, as parents, assume as much control of the situation as possible. All insulin is given with a parent present and directly observing/supervising. The same for blood glucose testing. The meters you are using are downloadable and have memory so use these to document. In some ways, your child is “requesting” to be stopped by “getting caught” with this behavior. The risks are diabetic ketoacidosis and all its dire consequences. In school, this means all insulin and blood glucose testing is done in front of the nurse with direct supervision and observation. The counseling must include the entire family and must focus directly on this self-destructive behavior and the loss of trust that comes with the lying.

The good news is that such direct counseling and direct therapy coupled with the direct adult supervision brings the self-destructiveness to an immediate halt and then allows some resolution to be possible. The only downside is the emotional guilt of parents who do not take back this responsibility and thus allow their child/teen to proceed or escalate. Good for you for recognizing it and bringing it to everyone’s attention.

SB