From New York, New York, USA:
My newborn granddaughter (one week old) has been diagnosed with neonatal diabetes. We've been told that there is a 70% chance that she will outgrow it. If this does not occur, what is the long term prognosis for a normal life span without major repercussions? Also, is there a current treatment to increase the odds of this happening?
First of all, I don't think that there is anything anyone can do to influence whether your granddaughter has transient (TNDM) or permanent (PNDM) diabetes mellitus. Reliable figures for the long term prognosis really are not available. In part, because these conditions are very rare, and, in part, because management skills are constantly increasing. If you think the parents or the doctor might be interested, and, you have access to a medical library, you might like to photostat a report by Shields.JP. in Hormone Research 2000.Jul.53 Suppl S!:7-14. This doesn't so much review prognosis as outline some of the new genetic determinants that could make prognosis more precise.
In more practical terms, the things that might be done now to ensure optimum care are:
- To have access to a pediatric diabetes care team that includes either a pediatrician or a pediatric endocrinologist together with a nurse educator, a dietitian and a medical social worker. Ideally, they should be accessible at all times by telephone and also by fax and e-mail.
- To keep in touch with all that is new in the practical management of diabetes, e.g. new insulins such as glargine and lispro, new insulin regimens, syringes that can measure to half units, diluents for giving even smaller amounts of insulin, and devices for measuring blood sugar painlessly like the FreeStyle meter. Add to this Internet support sites such as childrenwithdiabetes.com.
- If this turns out to be TNDM, to realise that the digestive enzymes produced by the exocrine pancreas may also be reduced and need to be supplemented.
- To continue to hope the new techniques of islet cell transplantation or in the use of an external artificial pancreas where an insulin pump and a glucose sensor are combined will soon be applicable to small children.
- Lots of moral support from grandparents!
Original posting 12 Sep 2000
Posted to Daily Care
Last Updated: Tuesday April 06, 2010 15:09:14
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