We have a daughter (she will be nine soon) who was diagnosed as having IDDM almost two years ago. Our son (now ten years) was tested for antibodies first over a year ago and was found positive (66 JDF units). Last summer, he was tested again and there was a dramatic change in the amount of antibodies, from 66 to 514. He was tested again two months ago and again 514 JDF. Now, my wife and I have become convinced that he will develop IDDM in the very near future. What do you think? Is it practically certain that he will develop it? We are participating into the nicotinamide trial, but have been thinking whether we should begin giving him small amounts of insulin -- under the eyes of health professionals, of course. What is your opinion?
He was in glucose intolerance tests (both IV and oral) 6 months ago and the results were that everything is OK.
Yours is a difficult question to answer particularly as I don't know whether the nicotinamide study in Finland is part of ENDIT or is one on its own. Nonetheless I think it is helpful to start with a look at a study that was recently completed and published from New Zealand. In a group of 20,195 school children, 185 were found to have antibody using the early ICA methodology. Of these 173 were treated with nicotinamide for an average of 7.1 years and 7 became diabetic. In a comparable population of similar size, the incidence of insulin requiring diabetes over the same time period was a little more than double that in the treated group. What was shown was first of all that nicotinamide did indeed have an effect in delaying the onset of clinical diabetes; but it also showed that having a positive ICA test by no means always led to frank diabetes within the time frame of the study.
If the ICA levels in your son were measured by the same technology and you could find this out by asking the doctors then his overall chance of getting diabetes in the next few years is quite small on the other hand that chance can be significantly reduced by taking nicotinamide. You would also need to find out, if you can, whether your son is in the treated group or in the control group. If the former I would make no changes. If, on the other, hand he is in the control, you and your wife would have to consider withdrawing from the study, which you have a right to do, and putting him on nicotinamide or perhaps on insulin. If you did this you would need the support of a pediatrician or endocrinologist who was experienced with childhood diabetes and whom you could trust to provide the quality of care and education that is presumably available to those who remain in the study and eventually complete. On balance I think I would not advise a change.
If, on the other hand, the antibody test was not the single rather simple ICA test described above, but used the more modern technics in which a more specific series of three antibodies are measured -- ICA512, anti insulin (IAA) and anti glutamic acid decarboxylase (GAD) -- then the chances of developing clinical diabetes can be more precisely defined. If your son was positive for only one antibody his chances of getting diabetes are again quite small and I would want no change whether he is on nicotinamide or is a control. If he was positive for two antibodies then he will probably be diabetic within eight years and if he was positive for three antibodies then he will probably be diabetic within about half that time. In the latter two instances then it makes a significant difference as to whether he is treated or not. Again if he is positive for two antibodies and is in the nicotinamide treatment group I would make no change. If he is positive for three antibodies, you might want to discuss with his doctor whether he might be withdrawn from the study and treated with small doses of insulin. There is perhaps a small disadvantage here in changing to what is really early treatment of clinical diabetes from a regimen of 'delaying' that condition.
In a few years' time, the emphasis will probably swing to the detection of 'at risk' children in infancy and the institution for those that are positive of some sort of vaccination. Until the benefits of delaying insulin dependance are more clearly defined, I think you have to think carefully about leaving a care team that can ensure optimal care in the years to come.
Answer from Dr. Lebinger:I assume that you are participating in a "placebo controlled" study to see if nicotinamide treatment will prevent or delay the onset of clinical diabetes in individuals at "high risk". Your son is probably receiving a pill which may contain nicotinamide or may be a placebo (contain no medication). Probably neither you nor your son's doctors know if your son is actually receiving the treatment or the placebo, and probably neither you nor your son's doctor can find this out until the end of the study.
You should talk with your child's own physician about your question whether or not your child should receive insulin at this time. As of yet it has not been proven that either nicotinamide or insulin will definitely prevent the development of diabetes in high risk individuals. If you decide to start your son on insulin you will probably have to drop out of the nicotinamide study. If you do start insulin, you must notify the study doctors of your decision. It is your right to decide to drop out of the study, but it is important that the information analyzed in the study be correct and not complicated by unreported use of insulin on the side.
If you decide that you want to treat your son with insulin, I strongly advise you not to do this on your own, but in cooperation with a pediatric endocrinologist.
Original posting 12 Aug 97
Last Updated: Tuesday April 06, 2010 15:08:54
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