DEAR DR. ROACH: At the age of 19, our son started having seizures in his sleep. The first one was a grand mal seizure, and we were able to get him to the hospital. After that he had a few petit mal seizures, always right after he got out of bed in the morning. He told us that he was not even aware he was having them until he came out of them and vomited or had body aches. He was a very healthy child all his life, had regular checkups, and we had no idea he had epilepsy. After several EEGs and CT scans, two neurologists could find nothing wrong with him. They ended up prescribing levetiracetam to limit any future seizures. He seemed to be doing fine — he was going to college, working, exercising at A gym, etc. Fifteen months later, we found him dead one morning in his bed. The only cause of death the medical examiner came up with was “seizure disorder.” After doing more research, we now believe it was SUDEP — Sudden Unexplained Death in Epilepsy, because his death fits all the SUDEP criteria. Since SUDEP is a common cause of death in epilepsy, why didn’t his neurologists communicate that to us and to our son that he could be at risk for SUDEP? If we were made aware, we could have taken precautions, and he would be alive today. Patients and families never hear about SUDEP until someone dies, and now we know. —P. and J.L.

ANSWER: I am so sorry to hear about your son.

Sudden unexpected death in epilepsy causes between 2 percent and 18 percent of all deaths in people with epilepsy. The overall risk is about 2 per thousand people with epilepsy per year. It is more likely in those with very frequent seizures, and with those whose epilepsy begins at a very young age. It also may be more likely in men, at age 20-45, and in those who have seizures during sleep. So indeed your son met many of the typical characteristics.

One study did show that monitoring people at high risk for SUDEP at night might reduce the likelihood of death. A joint task force of the American Epilepsy Society and the Epilepsy Foundation recommended the risk of SUDEP be disclosed to all patients with a diagnosis of epilepsy. This might help with compliance with medication and for monitoring of some high-risk epileptics.

Although I can’t do anything to help your son, I hope your experience can inform others about this uncommon but devastating complication of epilepsy.

DEAR DR. ROACH: Our granddaughter gave birth to a baby boy with a heart defect: coarctation of the aorta. He had surgery several days later and is thriving. He was diagnosed by a screening test, but several states are not requiring this test. Apparently the test is not expensive and is not injurious to the baby. — V.F.

ANSWER: From what I have read, it looks as though the screening test, which is simply measuring the oxygen in the blood with a small device that shines light through a finger or toe, is effective in finding most cases of congenital heart disease. The United States is in the process of mandating screening, but some states do not yet have a plan implemented. Some Canadian hospitals screen newborns, but it is not mandatory in Canada.

I strongly support mandatory pulse oximetry for newborns.

TO READERS: The booklet on back problems gives an outline of the causes of and treatments for the more-common back maladies. Readers can order a copy by writing: Dr. Roach — No. 303, Box 536475, Orlando, FL 32853-6475. Enclose a check or money order for $4.75 U.S./$6 Can. with the recipient’s printed name and address. Please allow four weeks for delivery.

Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL 32853-6475. Health newsletters may be ordered from www.rbmamall.com.

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