Thursday, May 24, 2018
Health

Mysterious brain lesions send Pasco County man to National Institutes of Health for answers

NEW PORT RICHEY

Last May, while at college in upstate New York, Cody Alessi started having seizures. • The first one — or at least the first time there were witnesses — came during a bus ride with his school baseball team. Alessi, then 20, had just dozed off when his body began shaking uncontrollably. A friend alerted coaches on the bus who called 911. Alessi was unresponsive for more than 10 minutes, then dazed and confused for half an hour. • Doctors at a nearby hospital said he had suffered a seizure. They sent him to a bigger hospital, where an MRI showed abnormal lesions on his brain. But doctors didn't know what caused them — maybe a parasite, one speculated.

Once Alessi was back home in New Port Richey, he visited doctors around the bay area, who all had their own theories.

Alessi was put on high doses of antibiotics; he was given a drug commonly used to treat parasites in horses; he took powerful steroids that caused him to gain 35 pounds in 3 weeks. One physician insisted that Cody have immediate surgery to place a shunt in his brain to drain fluid in case one of the lesions burst.

"Every doctor was mystified," said Kevin Alessi, 46, Cody's father. He peppered doctors nationwide with e-mails describing his son's case, hoping someone could help.

Today, nearly a year after that seizure on the bus, Cody Alessi is one of thousands of Americans that the National Institutes of Health believes is suffering from an unknown condition. He's one of the 170 that the NIH annually invites to its headquarters in Bethesda, Md., to be studied — and they hope diagnosed, though no promises are made. Alessi starts a weeklong hospitalization in Bethesda March 19.

Many of those who turn to the NIH's Undiagnosed Diseases Program would be happy just to have an official name for their suffering.

"There's often a suspicion that surrounds these people," said Dr. William Gahl, clinical director of the National Human Genome Research Institute and director of the Undiagnosed Diseases Program (UDP).

"Family members, employers, doctors are at a loss for what to call it. Some doctors may not even want to see that patient. That isolates them and gives them incredible desperation which is why they are open to any hopeful possibilities we may be able to provide."

The UDP was started in 2008 as a federal research project to learn more about what causes illness, particularly genetic sources, and how to treat it. Only a fraction of the 500 to 600 who apply each year are invited to spend a week being studied by top experts in their fields. About 40 percent are children, some as young as 6 months. It's all covered by federal research funds, because they are considered participants in clinical trials.

"During their week here, we get done what it takes a year or two years to accomplish on the outside," said Gahl. "Because there's no insurance involved, time is not spent getting approval for all the tests. They are in-patients so we can have all sorts of experts see them."

But most patients don't leave with a tidy diagnosis and treatment plan. "Maybe 10 percent get a helpful diagnosis; 25 percent get a partial diagnosis. We really only solve about 20 to 25 percent of cases," said Gahl.

The data from each patient is collected and used to identify new diseases. Last year, scientists in the program identified a rare, debilitating vascular disorder known as ACDC that affects arteries of the lower extremities while sparing the arteries of the heart.

Because of an unusual opening in the program schedule and because all his medical files were readily available, Cody was accepted within days of his application.

"We're ready for any answer," his father said.

Cody, who is now 21, had his last seizure at home, about two weeks ago. Antiseizure medications have decreased episodes, but because of his condition he no longer can drive.

Still, he's trying to resume a normal life by getting back in touch with friends, applying to colleges closer to home and staying in shape to return to college baseball. He's grateful for the chance to go to the NIH and hopes they'll figure out what's happening in his brain.

Meanwhile, he says, "I try not to think about it."

Irene Maher can be reached at [email protected]

Comments
Estimated 7,000 bodies may be buried at former asylum

Estimated 7,000 bodies may be buried at former asylum

STARKVILLE, Miss. — Some of the boxes stacked inside anthropologist Molly Zuckerman’s laboratory contain full bones — a skull, a jaw, or a leg. Others contain only plastic bags of bone fragments that Zuckerman describes as "grit." These humble remain...
Published: 05/23/18
FDA warns teething medicines are unsafe for babies

FDA warns teething medicines are unsafe for babies

WASHINGTON — Federal health officials warned parents Wednesday about the dangers of teething remedies that contain a popular numbing ingredient and asked manufacturers to stop selling their products intended for babies and toddlers. The Food and Drug...
Published: 05/23/18
A chronic lack of sleep could lead to decreased brain function, study finds

A chronic lack of sleep could lead to decreased brain function, study finds

A sleep study revealed that less than six hours of sleep a day can limit the brain’s ability to function properly.The study, published on Monday in the journal Proceedings of the National Academy of Sciences, found that people experiencing less than...
Published: 05/23/18
Many cancer patients juggle care along with financial pain

Many cancer patients juggle care along with financial pain

Josephine Rizo survived chemotherapy, surgery and radiation, but breast cancer treatment wrecked her finances.Money was already tight when doctors told the Phoenix resident she had an aggressive form of the disease. Then she took a pay cut after goin...
Published: 05/22/18

Hernando County officials gather to remedy ‘dearth of services’ for youth with mental illness

BROOKSVILLE — Educators, court officials, law enforcement officers and health care professionals met Friday to identify the best ways to keep local youth with mental illnesses out of the court system and provide treatment for those already in the sys...
Published: 05/22/18
Give your arms a workout, too

Give your arms a workout, too

In addition to appearance, it is very important to maintain strength in those arms, as they are needed for practically every upper body movement we perform. We often take our 23 arm muscles for granted, until we reach a point where it suddenly become...
Published: 05/22/18
Intermittent fasting seems to be a good thing, new report suggests

Intermittent fasting seems to be a good thing, new report suggests

Going long hours without eating isn’t good for us, we are often told. Our bodies need fuel regularly. Otherwise, we may become lethargic, tired and hungry. Our thinking can become mushy, our ability to work, and even play, hampered.Not so fast.A new ...
Published: 05/22/18
U.S. approves first drug developed to prevent chronic migraines

U.S. approves first drug developed to prevent chronic migraines

TRENTON, N.J. — U.S. regulators Thursday approved the first drug designed to prevent chronic migraines. The Food and Drug Administration’s action clears the monthly shot Aimovig (AIM’-oh-vig) for sale. It’s the first in a new class of long-acting dru...
Published: 05/18/18
Know your blood pressure numbers? Today (May 17) is World Hypertension Day

Know your blood pressure numbers? Today (May 17) is World Hypertension Day

Today (May 17) is World Hypertension Day, and the American Medical Association is encouraging people to monitor their blood pressure levels and get high blood pressure, or hypertension, under control. High blood pressure, sometimes referred to as the...
Published: 05/17/18
Study: Depression in men may lower chances for pregnancy

Study: Depression in men may lower chances for pregnancy

Women having trouble getting pregnant sometimes try yoga, meditation or mindfulness, and some research suggests that psychological stress may affect infertility. But what about men: Does their mental state affect a couple’s ability to conceive?The la...
Published: 05/17/18