From Indianapolis, Indiana, USA:
My friend has an 11 year old daughter. She is Type 1, and has had diabetes for almost 2 years. She is in what she calls a honeymoon, and has been in it longer than anyone usually has it. She has been in honeymoon for over 7 months. She has a terrible time regulating her blood sugar and takes shots. She has a problem with ketones on and off in her urine. Her immune system attacks itself.
My friend would like to know if you know of anyone else with this problem and how are they are handling it. She would really like to talk to someone about this. Her doctors tell her they don't know why her ketones are on and off, and cannot answer why her body is reacting the way it is, as in the case of her pituitary gland is being virtually shut down, but the disease has bypassed organs that usually are attacked first.
The story that you tell us about your neighbor and her 11 year old diabetic daughter raises a number of issues. In the first place I wonder if for some reason they missed out on the initial Diabetes Education program at the hospital. At all events I think that it would be a great help for them to go back and talk to the team there about how to manage the problems she is having with her daughter. This means not only talking to the doctor, but to the nurse educator, the nutritionist and the Medical Social Worker too. In the meantime your friend and her daughter might be helped by copying Understanding Insulin-Dependent Diabetes by H. Peter Chase, M.D., from the Internet; it is written so that her daughter could understand it too.
As to the ketones and the erratic blood sugars, I believe these will be easier to control as soon as your friend gets a better understanding of how diet and stress and exercise work together with the amount of insulin and the kind of insulin to keep blood sugars near to normal values. She should not however make any important changes until she has talked again to their diabetes team. At this stage I do not think that a 'chat group' on the Internet is the way to go. Also, if the daughter comes from a Hispanic or African American family it is quite possible that she has a kind of diabetes that is different from the common autoimmune variety and that the treatment needs are also somewhat different.
Lastly, I think it is important, until these problems are resolved, that all insulin injections (I have assumed that she is on insulin) are carefully supervised and that means the drawing up of insulin as well as the actual injection. Sometimes children will deliberately make mistakes, especially when something is going wrong, as a plea for help which needs to be recognised.
Original posting 28 Jan 98
Last Updated: Tuesday April 06, 2010 15:08:56
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