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Question:

From Fort Wayne, Indiana, USA

My five year old son was diagnosed with type 1 diabetes about a year ago. His mother and I are divorced, and I am fighting an uphill battle with regard to knowledge about diabetes. She has a court order that I cannot see him more than two hours a week without more classes, but I have tried so many places, and I keep running into brick walls.

I can't seem to get anywhere with his nurse practitioner or his doctor. I keep leaving messages about classes or whatever I can learn, but I hear nothing in return. I've tried all the hospitals, and they all say go to his doctor. I have even tried to take some college nursing classes which no one seems to offer. Is there anything else I can try? The more time that goes by, I feel the farther I get behind.

Answer:

Something doesn't make sense. I certainly hope that neither the child's mother, you, nor any of the lawyers are trying to use the diabetes to fight over custody, financial arrangements, visiting, etc.

There may not be classes for parents of children with diabetes near you, but perhaps you can travel somewhere to take a class. Classes are nice, but more important is that you know what to do to take care of your child's diabetes -- his or her particular meal plan, insulin dose, treatment and prevention of low blood sugars, and sick day rules.

If the child's mother presently has custody of the child, your child's physician may not be allowed to deal with you. If there is a court order that you need to be educated, I suggest you try to get a court order allowing you to meet with the child's physician. Ideally, both parents should go to the doctor at the same time to work out schedules for when the child spends time at different parents' houses.

It is also not fair to ask the doctor, nurse, or dietitian to mediate between the two of you. If this is the only reason you don't have partial custody or visiting rights, it should be fairly easy to remedy. If both parents can't agree to sit peacefully together with the child at doctors' visits, then each parent should alternate taking the child to the doctor and work out a schedule for when they have the child. HMOs may not authorize extra visits so you may have to pay out of pocket for extra visits.

You could meet with a dietitian to plan several menus and a nurse to learn how to test the blood sugar and give insulin. You will need to know your child's own symptoms of low blood sugars and how to treat them. You will need to know how to use a Glucagon Emergency Kit in case you need it and what to do or whom to contact if the child gets sick.

Each parent will have to understand that the other parent may manage the child slightly differently when they have the child and shouldn't argue over this. If this is not possible, perhaps the doctor or nurse could write out what you need to know to take the child to your house over night, and someone could test you on these goal oriented skills and knowledge.

You may want to keep separate supplies at your house. It is very important when parents are divorced or separated that they try to cooperate over the management of the diabetes and not make the child feel even worse about having diabetes -- that the diabetes gives the parents one more item to fight about.

TGL

Additional comments from Dr. Stuart Brink:

Your first option is to call your child's diabetes health care team and schedule an official office consultation -- and ask for their assistance. It's not very likely that they will refuse. When you are in the office -- without your child -- you can talk honestly about your needs and listen for their suggestions about how to be taught what you need to know to be an appropriate parent of a child with diabetes -- and meet your own obligation and responsibilities as well as the court orders.

Even if you did not do this previously, you can always learn and show interest in learning in this fashion. If this does not work, get on the telephone and make appointments at one of the big academic diabetes centers. If you are close to big cities where there are medical schools/centers, there are probably pediatric diabetes centers there as well.

SB

DTQ-20020801153405
Original posting 29 Aug 2002
Posted to Other Social Issues and Community Resources

  
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Last Updated: Tuesday April 06, 2010 15:09:38
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