From Little River, Kansas, USA:
I have a friend whose nine year old son diagnosed with type 1 diabetes four weeks ago. He was hospitalized and received three days of instructions on administering insulin, but the meal planning education was haphazard. Ten days after he was diagnosed, his seven year old brother was admitted to a hospital with a potassium level of 2.7 and an incidental finding of glucose of 279 mg/dl [15.5 mmol/L]. He was placed on insulin, but has not yet seen a diabetes specialist. He is scheduled to see an endocrinologist next Tuesday.
Mom is a single mother with six children and is on state assistance that does not pay for outpatient diabetes education. Thus far, she is just giving the younger boy whatever insulin doses she thinks he might need. Incidentally, he is bipolar with many, many behavior problems.
I am a CDE and have been contacted by the school for help. I met with the school when the older boy first returned to school after his diagnosis. They were very receptive to helping him and we worked out a care plan for him. The small, rural school only has a nurse in house on Fridays so the school secretary, who is completely unfamiliar with diabetes, is trying to help these boys with their diabetes care. Mom is noncompliant with coming in for training that I have offered to do at no charge to her since her insurance will not cover. She sends notes to school with instructions to give the behavior problem child glucose tablets when he wants them without checking his blood sugar because "he knows when he is low." The older boys runs low frequently and is a very picky eater. Mom sends a note every morning with what dose of insulin she wants both boys to be given at noon and the boys check their sugars, give their insulin, and then, sometimes, refuse to eat what is offered. Mom has based the dose on the what she has seen on the menu that was sent home ahead of time. This is a complicated mess!
What is the school's responsibility in this whole situation? The cooks are trying to work with the boys. They boil eggs for them, keep string cheese and crackers with peanut butter for them and try to offer them choices. The administration keeps them safe by letting them keep testing supplies in their rooms. The older boy is able to keep glucose tabs on his person at all times, but the younger boy can't because he just eats them whenever he wants them. Do you have any suggestions?
I assume these patients have a pediatric endocrinologist. I would recommend that the school get written instructions from the doctor how to adjust the insulin if the children don't eat (they could give it after the meal and adjust the dose depending on how much the children eat). If the school has any other questions regarding the care of these children, the school should put the questions or concerns in writing, give them to the mother, and ask her to get answers in writing from the doctor. I would recommend trying to have these children see the doctor weekly until a plan is worked out. There are a couple of issues here:
- You say the mother refuses to come in for training, but she does sound very involved. What does she need training for? Has the doctor ordered it or the school has asked you to help the mother out of the kindness of your heart? If the mother is giving the insulin, keeping medical appointments, seems reasonably knowledgeable about diabetes care, and is trying to communicate with the school, but doesn't want to come in for training, I don't think there is much the school can do other than request specific instructions in writing from the doctor.
- If insurance won't pay for diabetes education, there isn't much you can do. If the school feels the mother is not knowledgeable about diabetes care, they need to request written information and specific instructions from the doctor through the mother. If the school feels the mother is not acting on the doctor's recommendations properly, they might be obligated to report the family to child protective services. Unfortunately, sometimes this is the only way to get a social worker involved who can cut the red tape.
- Another way to help educate the mother, in New York, is for the doctor to request home care services for the children. I don't know if this is available in your state, but it can be very helpful. The primary goal is to educate the family. Sometimes a social worker also gets involved. It sounds like what this family needs most is a very good social worker! If the Diabetes Clinic can't provide a social worker, it is possible that the mental health facility that provides care for the bipolar disorder might be able to help.
- Obviously, this family needs time and help. If Medicaid in your state won't pay for outpatient diabetes education and you can't get home care, either the doctor will have to provide the education at the outpatient visits or perhaps there is a way to bill for these services at the outpatient clinic where the children are seen. If the blood sugars are very out of control, the doctor may be able to justify an inpatient admission to improve control and arrange for some more education during the hospitalization. Hopefully, you won't have to wait for a life-threatening medical emergency requiring hospitalization to get help for this family.
Additional comments from Dr. David Schwartz:
First of all, the mother should contact the Diabetes Team with whom she had worked. The school can also contact them for "school instructions."
The reason I think this is important for the school to do, is that you have raised enough flags in my mind with what you have written to suggest that the social situation may not be best conducive for these children to thrive. I think that perhaps the Department of Child Welfare or Social Services may need to be involved. The family's diabetes team likely has access to a social worker familiar with the best approach and the "buzzwords," so to speak.
Additional comments from Debbie Butler, MSW, LICSW, Licensed Clinical Social Worker:You may want to call the American Diabetes Association and speak to someone in the advocacy department at 1-800-DIABETES (1-800-342-2383) for more clarification. They may be able to help answer some of your questions.
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