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Question:

From California, USA:

Our 4 year old son was diagnosed in the E.R. with Type 1 diabetes after being treated for flu-like symptoms for two days. In the E.R. he had severe ketoacidosis and later became comatose. He died two days later, primarily from cerebral edema. My first question is how many children die this suddenly from complications related to diabetes? My second concern is does this predispose our other children (ages 7 and 1) to Type 1 diabetes? Our only "family history" of Type 1 diabetes is my wife's second cousin. Is this close enough to be considered a genetic link?

Answer:

I am sorry to hear about the tragic loss of your son. Cerebral edema is the complication that every doctor looking after children with diabetes fears. Fortunately it is very rare but when it occurs, up to 50% of victims die no matter what treatment is performed. The cause is not fully understood but involves cells in the brain becoming swollen with fluid and the movement of salts and sugar in and out of these cells is disrupted.

The details of risk of diabetes are detailed elsewhere at this website but in without doing any tests, the general risk for your other children is around 6%; i.e., they have a greater than 90% chance of not getting diabetes. Obviously, however, you will now be very sensitive to possible symptoms of drinking or urinating a lot and you should check out any suspicions quickly.

I hope that this is some reassurance to you.

KJR

Additional Comments by Dr. Lebinger

First of all, let me express my condolences on your tragic loss.

Ketoacidosis is a very serious condition which can occasionally lead to either brain damage or death. This is why we advise patients who know that they have diabetes to be very careful to treat high blood sugars with ketones very aggressively to avoid ketoacidosis. If you know you have diabetes, severe ketoacidosis with its severe complications can almost always be prevented.

If you do not already know that your child has diabetes, ketoacidosis can develop rapidly and be mistaken for a flu-like illness or stomach virus, especially in a young child. On the other hand, a flu-like illness or stomach virus can precipitate ketoacidosis rapidly in a child who was relatively asymptomatic but slowly developing diabetes.

The most common cause of brain damage or death is cerebral edema, or swelling of the brain. We have discussed the complications of ketoacidosis more completely in response to a previous question about a similar tragic situation.

Because you have had one child diagnosed with insulin dependent diabetes, your other 2 children have an increased risk of developing this condition in the future. If no one in the family has diabetes, each child has approximately a 0.3 to 0.5% chance of developing diabetes in the future. If one sibling has diabetes, the risk is increased approximately 10 fold to 3 to 5% (the chances are still far greater that neither of your children will develop diabetes in the future.) The fact that your wife's second cousin has diabetes probably does not increase the risk further.

Keep in mind, if either of your children do develop diabetes in the future, it is unlikely that they will develop severe ketoacidosis as you will be on the lookout for the early warning symptoms of diabetes - excessive drinking and urination. If you are very worried, you may want to discuss with your physician keeping at home strips to test the urine for sugar and ketones in case one of your children gets sick and you want to make sure that they aren't developing diabetes. If diabetes is diagnosed early and treated promptly, severe ketoacidosis with its serious complications is very unlikely to occur.

At the present time, the likelihood of developing diabetes can be predicted with a high degree of accuracy months to years before the blood sugar becomes abnormal by testing for antibodies against pancreatic islet cells and insulin. There is an ongoing study in the US to test relatives of individuals with diabetes (ages 3 to 45) and treat them with either insulin injections or oral insulin before their blood sugar becomes abnormal to see whether the diabetes can be prevented or delayed. (If you participate in this study, you will have a 50% chance of receiving treatment, and 50% chance of receiving no treatment.)

If you are interested in finding out more about this study, the Diabetes Prevention Trial (DPT-1), you can refer to the questions in our Index about prediction and prevention of diabetes. You may want to discuss the details of the study with a pediatric endocrinologist in your area. You can also call the DPT-1 coordinating center directly at 1-800-425-8361.

I hope that with time, you and your family will find the strength to cope with this tragic loss.

TGL

[Editor's comment: I'd also like to share our condolences to you and your family. We've discussed another similar case previously. WWQ]

Original posting 28 Mar 97
Additional comment added 4 Apr 97

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