Issaquah youth kicks rare form of epilepsy
January 17, 2012
By David Hayes
At its worst, epilepsy with myoclonic absences caused 1,000 seizures a day
Cindy Uribe can remember when her 10-year-old son was just 16 months old, turning heads on the soccer pitch.
“We’d gone to the Seattle University’s soccer field for a pickup game. Gabe had an infant’s soccer ball and was dribbling it up and down the sideline,” she recalled. “The adults were amazed by Gabe showing such control at such a young age.”
However, Gabe is just now regaining those promising soccer skills. At age 3, something happened. A bout with a rare form of epilepsy sidetracked all of his motor skills.
A brain disorder begins
Epilepsy is a brain disorder that involves repeated seizures, triggered by changes in the electrical and chemical activity in the brain.
Epilepsy happens more in children than it does in adults, according to Seattle Children’s. While it affects about 1 percent of the general population, about 5 percent of children younger than 5 have epilepsy — or about one in every 20 children under 5.
There are several types of seizures. They include:
- Myoclonic — brief, shocklike jerks of a muscle or a group of muscles that usually cause abnormal movements on both sides of the body at the same time.
- Atonic — muscles suddenly lose strength; eyelids may droop, the head may nod, and the person may drop things and often falls to the ground.
- Tonic — muscle tone is greatly increased and the body, arms or legs make sudden stiffening movements.
- Clonic — rapidly alternating contraction and relaxation of a muscle — in other words, repeated jerking. The movements cannot be stopped by restraining or repositioning the arms or legs.
- Tonic-clonic — Also known as “grand mal,” a combined seizure of tonic and clonic characteristics.
“Gabe had them all,” said Gabe’s father Mauricio. “The seizures were so constant, he had to take narcotics to calm his body down.”
At his worst, Gabe was experiencing 1,000 seizures a day.
That finally led to a diagnosis of epilepsy with myoclonic absences. It occurs more in boys.
“After the original diagnosis, we didn’t read much of the literature,” Mauricio said. “A lot of it said the prognosis was almost little chance of survival.”
And many of those who did survive suffered irreparable brain damage, he added.
Cindy said epilepsy with myoclonic absences cannot be treated with conventional medications.
“It probably doesn’t get the attention it deserves because it occurs in only 1 percent of epilepsies,” she said. “But it’s very debilitating.”
Medications and a miracle diet
At the illness’ worst, Gabe was being given a revolving door of medications. At its best, the medications reduced his seizures from 1,000 a day to just 50.
While both Cindy and Mauricio considered that a blessing, it still was too many for a developing boy already way behind his peers.
Because Gabe wasn’t a candidate for surgery, his parents were reading up about any other solutions. They heard about a diet that their neurologist highly recommended they give a try — the ketogenic diet. Essentially, it’s an extreme version of the Atkins diet. Cindy said that with the help of a dietician, Gabe was kept on a 90 percent fat diet, with 5 percent proteins and 5 percent carbs.
“He ate a lot of butter and cream,” she said.
They even had to monitor his toothpaste, as it, too, has some amounts of sugar.
“His 4th birthday cake was the worst,” Cindy said. “It was baked cream with Splenda.”
Then, a funny thing began to happen — the diet was working. Just a week after beginning, Gabe had just six seizures. By age 5, the seizures were gone and he was off the diet.
His parents remember the date well.
“His last seizure was Aug. 23, 2005,” Cindy said. “It was fast and furious. His epilepsy ended as quickly as it began.”
Gabe had to spend the next few years making up his developmental setback in therapy — occupational, speech and physical. Sports were a slow reintegration process. They discovered gymnastics actually helped with the big muscle groups.
After years of daily visits to specialists, it was almost meant to be that the soccer team Gabe ended up on in the Issaquah Soccer Club was Seattle Children’s.
“I was excited when I saw Children’s on the uniform,” Gabe said. “That’s why I turned out for Gunners league.”
The league and team were perfect for Gabe, as they emphasized having fun over winning. Cindy said Gabe still has to work very hard to keep up with his peers, but that won’t stop him.
“I like the determination he has,” she added. “But we don’t push him to score.”
“Which I do a lot,” Gabe emphasized.
David Hayes: firstname.lastname@example.org or 392-6434, ext. 237. Comment at www.issaquahpress.com.