Expert: Ask Suz - 8/22/2007

Question
I really hope you can help us. My daughter is developmentally delayed and has a seizure disorder, which seems to become more pronounced when she is tired, upset, or in a large croud of people. She takes phenobarb, lamictal,topamax,and kepra with no slowing down of seizures, or frequency. She has had a few odd breaks in her seizures, " the first few days of the ketogenic diet,"no longer on", and her first few days of beginning kepra in her drug regimen.
   I have recently met another mom, that had a child younger than mine, that had anxiety related seizures. She found out from some source that zinc, 50mg. per day not only helped her child slow down on the seizures from a run to a bare crawl, and in time he totally stopped having them.
I am desperate to help my child, she is very tiny, age fourteen, 68 pounds, but in proportion to her height and truly a beauty. Please tell me if giving her a zinc supplement could hurt her, and what amount would be safe? She takes a multi vitamin daily which has approximately 10 of zinc.
   Alley was born almost 3 months early, seizures started at 3 months, the doctors gave me no hope and three months for her, She is now 14, walking, and eating by mouth. She got her first hearing aid, and now I hear laughter, and a TV on Disney Channel at normal volume.
Please help me help my daughter.  

Answer
Hi Carmen,
This is way beyond my expertise. I have found this information and will share but AVOID all aspartame also.
Researchers at the University of Toronto decided to test vitamin E in 24 children with epilepsy whose seizures could not be controlled by medication.

They found that the frequency of seizures was reduced by more than 60 percent in 10 of 12 children taking vitamin E supplements. (They took 400 international units a day for three months in addition to their regular medication.) Six of them had a 90 to 100 percent reduction in seizures. By comparison, none of the 12 children who took placebos (inactive substances) along with their medication improved significantly.

What’s more, when the children who were taking placebos were switched to vitamin E, seizure frequency was reduced 70 to 100 percent in all of them. The researchers noted that there were no adverse side effects.

“Vitamin E apparently has no direct anti-epileptic action,” says Paul A. Hwang, M.D., the study’s main researcher, associate professor of neurology in the University of Toronto Department of Pediatrics and Medicine and director of the epilepsy program at the Hospital for Sick Children in Toronto. In other words, once a seizure is taking place, vitamin E can’t help. “But it may act as a scavenger of free radicals in some forms of epilepsy, such as post-traumatic seizures, and so help protect the membranes of brain cells.”

Free radicals are unstable molecules that are generated by chemical reactions involving oxygen. These molecules are potentially harmful because they grab electrons from the healthy molecules embedded in cell membranes, damaging the protective membranes. Free radical scavengers called antioxidants, such as vitamin E, offer free radicals their own electrons and so save cell membranes from harm, Dr. Hwang explains.

In animals, seizures can be induced by chemicals that produce free radicals (ferrous chloride, for instance). Iron from blood that gets into the brain after a head injury may cause seizures in the same way, Dr. Hwang says. “And the seizure itself generates more free radicals, possibly setting up a cycle that leads to frequent seizures,” he adds.

Dr. Hwang and his colleagues continue to use vitamin E with good results in their patients with seizures who don’t respond to standard anticonvulsant drugs. “It’s not a cure-all, but it can be very helpful,” he says. “If someone is going to be helped by vitamin E, the benefits will be apparent in about three months.”

He has found that 400 international units daily of d-alpha-tocopherol acetate, the most biologically active form of vitamin E, is safe and effective even in children as young as age three. (Nutrition experts say that infants under age one should not be given more than 50 international units daily.) Most adults can safely take up to 600 international units without problems, but don’t take more than this amount daily without medical supervision. These high amounts are not easily available from foods, says Dr. Hwang.

“It’s important to work with a doctor on this,” Dr. Hwang adds. “In some cases, under medical supervision, it may be possible to reduce the dosages of some seizure drugs.”

Food Factors
Most cases of epilepsy are not treated with dietary changes, but some are. Here are a few things that might prove helpful.

Ask your doctor about a ketogenic diet. A diet virtually devoid of starches and sugars and high in fat has been used as a treatment for children whose epilepsy cannot be controlled with drugs or who have to take such high doses of drugs that side effects become intolerable.

"The diet makes the body burn fat, not sugar, for energy and produces waste products called ketones that are thought to help suppress seizures," explains John M. Freeman, M.D., professor of pediatric neurology at Johns Hopkins Medical Institutions in Baltimore. Studies suggest that about 30 percent of children who try the diet have their seizures completely controlled; another 40 percent have enough benefit to warrant staying on the diet. Some are able to reduce medication, some have fewer seizures, and some function better.

Most children who benefit stay on this very restrictive diet for two years, then gradually begin to eat more starches and sugars. Often the children eventually stop the diet and find their seizures do not recur.

Vitamin and mineral supplements are necessary during this diet, since it is low in fat-soluble vitamins and calcium. Critics say the diet is too high in fat and is unhealthy for growing children. But, says Dr. Freeman, "we've seen no evidence of heart disease or growth problems."

Use common sense, experts suggest. "If you're getting more than a serving or two of aspartame a day, try eliminating it completely from your diet for at least one week and see if it helps," suggests James Neubrander, M.D., a doctor in private practice in Hopewell, New Jersey, with a special interest in epilepsy and nutrition.
 Good luck and I wish I could have helped further. Suz