My husband’s 12 year old son has a seizure disorder that no one has been able to identify (classed as “non-specified seizure disorder”). When he was 4 days old, he was hospitalized for 18 days because he had not been receiving any milk (breast feeding was apparently not working) and for that entire time, they were unable to regulate his blood sugar. There were unexplained highs and lows throughout the hospitalization. Over the years, he has been on phenobarbital. His neurologist refuses to consider any correlation between blood sugar and his seizures.

A month ago, he had an extended grand mal seizure after spending a weekend with his grandparents and eating less than he eats at home and more sugar than he gets at home. We could generally see a correlation between what he ate or stress and the seizure. This past weekend, he went to his grandparents again and had several regular Cokes and then orange juice with waffles and syrup for breakfast. They know this is not what we want, but they wanted him to be happy. Monday, while playing basketball at day care, he had a seizure. Orange juice has always been able to bring him out of his seizures. It started to help, but then the seizure got stronger and we wound up at the hospital. The only blood sugar test we have gotten the doctors to do (and the neurologist never would, this was his pediatrician) is the one where he fasts overnight and they draw blood once.

One other symptom is excessive thirst. We don’t know if it is a blood sugar issue or swallowing issue, but he would rather drink his weight in fluids before he ate anything.

Two other facts that might help are that it is now believed that his mother had undiagnosed gestational diabetes during her pregnancy and no other neurologists will see us because they have such great respect for his current doctor that they would not want to offer a second opinion.

Does this sound like it could be diabetes or hypoglycemia? Should we demand one of the extended glucose tolerance tests? Do you have any suggestions on what to say to make the doctors listen?

It sometimes happens in the course of caring for a child with a difficult and long standing problem that an antipathy develops between the parents or guardians of the child and the doctors. Both sides can get locked into a situation where communication becomes increasingly impaired. In the case of your husband’s son I sense, in the absence of any detailed figures, that you feel that the boy has been insufficiently investigated for some form of hypoglycemia as a source of his seizures and in turn I suspect that the doctors feel that your requests are unnecessary because they have already been answered. The restraints of today’s managed care systems may also make more elaborate studies difficult.

It may help as a preamble to say that I think it exceedingly unlikely that the problem of idiopathic epilepsy has anything to do with diabetes. The apparent volatility of the blood sugars at the time would also seem to rule out neonatal hypoglycemia as a cause of subsequent problems. There is nothing whatsoever in the story either to suggest that hypoglycemia secondary to some inborn error of metabolism had anything to do with the neurological problems. This is not however to say that a low blood sugar secondary to a low carbohydrate intake may not have helped to trigger a seizure. ‘Hypoglycemia’ of course is often invoked as a more acceptable and perhaps more treatable explanation for a variety of problems.

As to remedies there are a number of possibilities. The first is clearly to change doctors; but I rather gather that this would not be easy to do. The second would be to talk to the patients’ advocate in your system; the way to do this is increasingly displayed at the front desk in a clinic. An alternative approach would be to talk to the Medical Social Worker associated with the medical provider system, that’s if there is one! But perhaps a simple and inexpensive approach that might reassure you that hypoglycemia was not a problem would be to start building a profile of this boy’s daily blood sugars to see if he was at risk of hypoglycemia.

It might be a good idea too to have a dietitian confirm that his diet hasn’t become unreasonably distorted from the RDA especially in terms of calories.

DOB