From Wisconsin, USA:
My 20-month old daughter was diagnosed with Type 1 diabetes two weeks ago. It was devastating. When I read the horrible statistics on the Internet of the consequences of this disease, I feel so sad, so hopeless. What are the statistics/prognosis for long-term diagnosed diabetics, after 10 years of treatment, 20 years, etc.?
I am finding it very difficult, as are the doctors and nurses, to find a good level of insulin for her, as her age and level of activity. In addition, her diet is so hard to control at this age. What studies are being done to show why juvenile diabetes is on the rise? The top endocrinologist at our Children's Hospital said that the rise in cases the last five years is startling. Any hints yet as to why?
There are several things that I would like to say in response to your questions. The first is that I think it very important that your little daughter is being looked after at a Children's Hospital because in all probability this means that not only is an endocrinologist involved, but also the other team members that you need, a nurse educator, a nutritionist and a social worker. It also, I hope, means that you have telephone access for help whenever you feel you need it. In addition to all these aspects of support you might like to use a book like Understanding Insulin-Dependent Diabetes by H. Peter Chase, M.D. which you can download without cost.
It is difficult to give accurate figures for the incidence of complications or for life span at this stage for the encouraging reason that with new insulins and syringes, new understandings of the contributions of diet and activity and stress on the very important goal of controlling blood sugar levels, the long term outlook has very considerably improved even in the last ten years. There will indeed be the burden of insulin injections and measuring blood sugars for the foreseeable future; but you should also plan that your daughter will be able to go to college and have a career and a family. An enormous effort is being made to find a way of making islet cell transplants more generally successful and great technical efforts are also under way to develop blood sugar assays that are non invasive.
It is not easy to get used to the needs of infants with diabetes with their volatile moods, activities and appetite; but it is likely that she will soon enter into a honeymoon period when there is some restoration of her own insulin production and control may become a little less difficult. It will take time; but with the support of the diabetes team you will find that you quite soon gain confidence in managing this problem. As a start, if you have not already done so, you might like to talk to them about using the new semisynthetic substituted human insulin lispro insulin [Humalog®] which has the advantage that it can be given after a meal and thus be adapted to both the pre-meal blood sugar and to appetite.
There has indeed been a significant rise in the incidence of Type 1 Diabetes in 'developed' countries like the U.S., Canada and much of Europe. Recent studies showed an increase from about 14.5 per 100,000 per year in young people under 18 in the Oxford area of England to 18.5. It is not known why this figure is increasing nor why it much larger in some countries like Finland and Scotland and much smaller in some other groups like African American and Hispanic children in the U.S. Early ingestion of cow's milk has been claimed as one of the factors; but the evidence is still in question.
One final point that might interest you is that there is now evidence that by giving insulin either by mouth or in very small amounts by injection to children before clinical diabetes has developed, the course may be made safer and easier. If your daughter has siblings you might like to call the Diabetes Prevention Trial (DPT-1) at 1-800-425-8361 to find out about having them tested; but talk to the doctor first.
Original posting 27 Mar 1998
Posted to Diagnosis and Symptoms
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Last Updated: Tuesday April 06, 2010 15:08:58
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