Rare treatment for Childhood Epilepsy provide hope to parents

Four months after Allie Jacobs was born her seizures began.

"Both arms would go out to her side and her little body would suddenly go into a crunch-like position, usually after waking," explains her dad.

These seemingly involuntary movements often came in clusters or waves, sometimes up to five to 10 at a time - a frightening ordeal for any parent. Her parents felt helpless.

Why was this happening to their daughter and were treatments available to help Allie? Parents Josh and Jodie Jacobs of West Bloomfield, Mich., sought the help of Gary Trock, M.D., director, Pediatric Neurology, Beaumont Children's Hospital (Royal Oak, Mich.) and co-medical director, Epilepsy Monitoring Unit at Beaumont Hospital, also in Royal Oak.

After Allie underwent an MRI scan, blood tests and an electroencephalograph, Dr. Trock diagnosed her seizures as infantile spasms, also known as West Syndrome. The EEG gives a "snapshot" of the brain's electrical activity.

Infantile spasms, also known as "IS", are a rare condition constituting 2 percent of childhood epilepsies. It is estimated that 8,500 infants in the United States have been diagnosed with the condition. Dr. Trock sees just a few cases each year.

Explains Dr. Trock, "It usually develops in the first few months of life and can be difficult to treat. Developmental delays in speech and movements frequently occur, especially if the seizures are not diagnosed early and treated aggressively. Even then, development may be delayed, leading to permanent deficits. Therefore it's important that children like Allie work with therapists - physical and occupational therapists, speech pathologists and early childhood educators."

Fortunately for Allie and her family, the drug Sabril, with the generic name vigabatrin, has helped her become seizure-free. After only three to four days on the medication, she stopped having spasms.

"It's been a lifesaver," says Josh Jacobs. "I call it her miracle drug."

At present, this medication is only available in Canada, so Josh Jacobs fills Allie's prescription in Windsor. In January a Food and Drug Administration Advisory Committee recommended Sabril for the treatment of two epilepsies, including infantile spasms. Based upon that recommendation, it is hoped the FDA will approve Sabril soon, making it available in pharmacies across the nation.

Physicians also treat infantile spasms with the hormone ACTH, although Dr. Trock pointed out it can have serious side effects and is very costly. Children usually stop having infantile spasm seizures by the age of 5, but may experience other types of seizures.

There is no single cause for the spasms. It is believed that infantile spasms can have many causes - a birth injury, metabolic and genetic disorders. Sometimes no cause can be identified.

Now almost 2, Allie goes to The Center for Children's Rehabilitation in West Bloomfield twice a week for physical therapy. Her parents are pleased with the services offered by the Beaumont Children's Hospital center.

Says Jodie Jacobs, "Everything has been so collaborative and well coordinated among Allie's specialists. As parents, you want the best for your child and we feel good knowing everybody is in our corner - doctors, nurses and therapists. We're grateful and thrilled with her progress."