From Montreal, Quebec, Canada:
My daughter's most recent hemoglobin results were alarmingly bad. The doctors say the only way it could have happened is that I never give her insulin. We recently realized her old glucometer was giving false readings so, the doses I was giving her (according to her sliding scale) were not accurate. They say I should have known this. My daughter is also 12 years old and going through the first stages of puberty, which I felt could also be a factor. They said it would have no affect at all that her results were my fault, and social services was even mentioned. I have been taking care of my daughter's diabetes since she was first diagnosed when she was five. I have no help. I do everything myself. I would never put my daughter's life in jeopardy and have always done what they have asked of me, even when it meant risking losing employment. How do I get my point across that I did everything I was supposed to do and due to a malfunctioning meter and puberty (two things out of my control) her blood sugars were bad?
Medical professionals are obligated to report any suspicion of child neglect to the authorities. That does not mean that you will be found "guilty" of child neglect. A high A1c does not necessarily mean that you are purposely omitting injections, but it may mean your child's diabetes is dangerously out of control. Unfortunately, whether or not it is justified, you may now have to prove that you are indeed trying to take the best care of your daughter.
I would suggest the following:
- Be very honest with your medical team and any social service individuals regarding the problems you have, including if you sometimes forget to give the insulin (yes, it can happen even if you are extremely dedicated). If your daughter is refusing shots or you think she is eating food without telling you so you can't cover it with insulin, tell your daughter's physician, nurse, dietitian, or social worker.
- If your daughter is giving her own insulin, take over giving the insulin and ask the school nurse to do so. You would be surprised how "creative" kids can be trying to fool you that they gave the insulin when they purposely didn't in order to get attention. I've known kids who squirted out the insulin while their parents were actually watching. These usually are nice kids who are afraid to ask for help.
- I have had meters with wrong readings. I like my patients to have two different brands of meters and to test with both meters at the same time periodically. If they are close, it is unlikely both are wrong or your technique is wrong (unless your daughter is testing with wet hands). Offer to do this (though some insurances may refuse to pay for two different brands of strips).
- Ask if you can come in to meet with the team more frequently as insulin requirements may increase rapidly during puberty.
- If your insurance will pay for it, it may be worthwhile to ask if your daughter can be hospitalized for a few days to reestablish a reasonable insulin dose and re-educate her. I find many 12-year-olds who got diabetes when they were five know less about diabetes care than 12-year-olds who got diabetes at 11. Everyone just assumes they know all about diabetes care because they have had it so long. Often, you need to pretend they just got diabetes today, and start over as if they knew nothing. This would be a good time to have a social worker meet with you and your daughter.
- Ask to have a social worker assigned to you as an outpatient and ask if you can meet with him or her at least once a week during this crisis.
I'm sure this must be extremely painful to you, but if your daughter's A1c is so high, you need help and maybe this incident will expedite your getting the help you need. If you are open to help and advice, hopefully, you and your daughter will benefit and, hopefully, you will not be put through any unpleasant investigations.
Additional comments from Dr. Stuart Brink:Usually, A1c levels that are incredibly high indicate omitted insulin. Whether or not this is purposeful or an oversight at this point is not so important as recognizing that she was not getting sufficient insulin. Most 12-year-old go through a phase where they hate their diabetes so much that they simply do not take their insulin. It is our job as health care professionals - and the same is true for parents - to be aware of such situations. The best response is not to get so angry at the diabetes team but to just take over the insulin administration. Draw up and actually give the insulin. If the meter was malfunctioning, this problem will obviously already be solved. If the insulin doses were just too low, then this will also be fixable. If there is more subtle psychological problems, depression, diabulimia, other eating disorders, sneaking food, falsifying records, your job as the parent will be to think about these and see how to get your child assistance. Either way, doing the insulin stops the immediate crisis since the dose can be adjusted based upon your direct observation of the blood sugar readings and your direct giving/measuring the insulins. When a parent says that they are going to actually give the insulin and do not or cannot do so, this becomes even more serious.
Additional comments from Debbie Butler, MSW, LICSW, Licensed Clinical Social Worker:I think it is important to ask your child's health care team what they would like you to do. Would they like you to take over all diabetes management tasks? Would they like you to use a new blood sugar meter? Would they like you to come to the clinic for more frequent medical visits? Would they like you to call in between medical visits to go over blood sugar numbers? I also wonder if they have a counselor they could refer you to that understands pediatric diabetes because it sounds like this situation has become very stressful.
[Editor's comment: You may also wish to suggest your daughter's diabetes team read Impaired insulin action in puberty: a contributing factor to poor glycemic control in adolescents with diabetes in the New England Journal of Medicine and Insulin resistance of puberty: a defect restricted to peripheral glucose metabolism. Furthermore, you might want to ask if they would want to hospitalize her and hook her up to a continuous glucose monitor to see what's going on with her blood sugars. See Disease Management in the Young Diabetic Patient: Glucose Monitoring, Coping Skills, and Treatment Strategies. BH]
Last Updated: Tuesday April 06, 2010 15:10:16
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