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Question:

From Ireland:

My daughter has Trisomy 21. Insulin dependent diabetes was diagnosed when she was 7 months old. She is now 2 years old. Is there any information or data to suggest that she will or will not in time be able to manage her diabetes as she gets older?

Answer:

The degree to which your daughter may be able to manage her diabetes as she gets older will depend on two factors. The first will be the extent to which, over the years that you manage her care, you will be able to balance out excellence of control versus simplicity of regimen. You would like to establish good control so that you do not lay the foundation of vascular complications at a later stage; but you also keep care simple so that, if neccessary, others, who understand diabetes less well, can administer it. The other factor, of course, will be the severity of her disability, which is very variable in Trisomy 21.

Type 1 Diabetes and Trisomy 21 are significantly linked; but the management of the diabetes is not special, though you are likely to need a close link with a diabetes team or with a pediatrician/endocrinologist that you are comfortable with.

It is unlikely that your daughter will ever be able to take complete care of her diabetes; but as she grows up you will gradually learn the extent to which this might be possible and what level of assisted living you should plan for. When I read your question I talked to a colleague, a nationally known pediatrician before she retired, whose yougest daughter has Trisomy 21; but not diabetes. This young woman grew up in a caring atmosphere with three elder sisters; but she learned to be independent and now has a job as a checker's assistant in a supermarket and lives in her own apartment. Her mother thought that she could be taught to manage injections and simple dietary regulation; but would have difficulty with recording tests and understanding their significance. She recently obtained a scuba diving certificate so she is well adapted to daily living She does however need assistance with financial matters other than cash, e.g., in writing checks, paying bills, etc. Help for this is provided by a private organisation called 'Denver Options' which exists to help handicapped people live independently as far as possible and which copes with a wide range of needs. One thing, then, that you might do even now is to find out whether such an organisation exists in your area. At the State and oftentimes at the County level there are services for the handicapped, which vary quite a lot from area to area. During school years these are linked to education departments; but assessment of need continues. This level of independence is probably the highest you can hope for.

DO'B

Original posting 3 Feb 97

  
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Last Updated: Tuesday April 06, 2010 15:08:54
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