My daughter is 6 years old. She has had diabetes since she was 4. She was diagnosed on June 1, 2002. She is not typical and we have had such a hard time keeping her blood sugar in its target range. Right now her A1C is 11.3. My biggest problem with her is she tends to sneak food all the time, or tricks people we know into giving her food. She also will hide her pump and monitor from me and I’m just wondering if anyone has had these same problems. I had to put locks on my fridge, pantry and really anything that has something she can eat in it. Her dad is in Iraq right now, and I’m doing this all on my own and it’s just getting hard for me to feel like I can’t help her. Is there anything I can read that would help me address this or to better understand her?

You must be so worried about your daughter. Her behavior around her diabetes is certainly concerning, but not at all unexpected given how very young she is. It is almost impossible for a child that is only six years old to be able to assume any responsibility for her own pump management, blood sugar checks, or food choices. I think her behaviors are letting you know that diabetes care is something that is just too big and too difficult for her to take care of.

I would strongly recommend you find a child psychologist or other mental health professional with expertise in working with children with diabetes. Your family has fallen into some difficult patterns that may be hard to break, and with your husband overseas, having an expert in diabetes issues for children is going to be a very important source of support for you during this difficult time.

Food should not ever become a source of conflict for families with diabetes, and a professional with expertise in diabetes will help you figure out ways to avoid these food wars. Why do you think she is choosing to eat foods without your knowledge? Keep in mind that if she had enough insulin on-board to cover her increase in food, her A1c would not be over 11. She is not getting enough insulin.

I would also strongly urge you to take complete control over all aspects of her diabetes care. This includes the ability to have access to her pump (many pumps have locks so that children can’t make changes to basal or bolus infusions) and access to her monitoring supplies. This may mean that you need to lock up her diabetes supplies (not the access to food), so that you know when she gets her insulin and how much she gets. You can also know what her blood sugars are, as you will be the one checking it. If she is really struggling with all of this, taking a break from the pump and returning to daily injections may be a very helpful strategy.

Please seek help for you and your daughter immediately. Things do not need to keep being so difficult for either of you.

JWB
Additional comments from Dr. David Schwartz:

You must feel overwhelmed! PLEASE talk with your own diabetes team about your frustrations and concerns. If they cannot direct you to a counselor for her (and maybe you), then I’d gently suggest a second opinion.

While your daughter’s behavior is not terribly uncommon (many Type 1 patients will try to “sneak” food), your description sounds more dramatic.

You may not like my approach but here goes.

I’d suggest DISCONTINUING insulin pump therapy! You must do this in concert with your diabetes team. Your daughter is clearly demonstrating by her actions that she is not respectful enough of the pump! Hiding it? Are you kidding me? That means she is disconnected. That means NO insulin. No wonder her HbA1c is so terribly high! Without any “baseline” insulin (or another “long-lasting” insulin), I am surprised she has not been in diabetic ketoacidosis (DKA), which can be life-threatening!

If a “basal-bolus” insulin plan still appeals to you and your doctors, then I’d switch her to Lantus (as the baseline) and then a short-acting insulin (such as Humalog, NovoLog, or even Regular) with meals as the “bolus” insulins. One could think about Ultralente as the baseline; you can mix other insulins with Ultralente in the same syringe; you can’t do that with Lantus. Any type of basal-bolus plan requires that she take insulin with meals (and often snacks). Who has been monitoring her insulin doses at lunchtime at school while she has been on the pump?

If taking a shot at lunch is not possible, then I’d think you’d have to go back to fixed twice or thrice daily doses of intermediate-acting insulins (such as NPH or Lente) with a short-acting insulin.

The food sneaking behavior such that you’ve placed locks on the food sources is very extreme! I presume that your daughter has typical Type 1 diabetes. Is she obese? Is she growing normally? Does she have developmental delays? There are rare obesity syndromes that can lead to this “food foraging” behavior; diabetes in those children is not too common – and tends to be Type 2 diabetes after they have become very obese.

I think a child psychologist to work with your child may be very beneficial to help her overcome her anger/denial/etc of her diabetes.

DS