Seeing results

Clinical trial helping boy overcome symptoms

Editor’s note: The People section is looking back at some of the people featured in past stories to see how they are doing now. The original story about Logan Kisamore ran Dec. 28, 2011.

In December 2011, Logan Kisamore, now 9, began taking part in a clinical trial of a medicine especially developed to make life better for him and other children who have a condition called Fragile X syndrome.

Logan was diagnosed at age 3 with the genetic condition that brings cognitive difficulties, sensory disorders and speech delays and is often misdiagnosed as autism.

Now, after several months on a new medication being studied, Logan’s condition has improved greatly, his mother Patricia Kisamore said.

“He has friends now,” she said. “He plays. He’s totally different.

“This year, we were able to have his first ever birthday party,” she said.

The party was held at a local pizza place, and Logan’s classmates from Parkview Elementary came to help him celebrate this past November, she said.

Twice a day, Logan takes a medication, called STX209 for now, that is being evaluated for effects on social impairment in those with Fragile X syndrome.

The clinical study has been undertaken by the research and drug development firm Seaside Therapeutics of Cambridge, Mass.

The firm is working to correct or improve the course of neurodevelopment disorders, such as Fragile X and autism, according to its website, http://www.seasidetherapeutics.com.

“For the first three months (of the trial), we didn’t really know if he was on the drug study,” she said.

The study is a double-blind, placebo-controlled study, meaning that neither the participants nor the researchers know who is getting a placebo and who is getting the medicine.

The Kisamores thought they saw improvement for their son, she said, but wondered, “Are we wanting to see the changes?”

Following the protocol of the clinical trial, Logan took the medicine (or placebo) twice a day for three months, before being taken off the medicine temporarily. His family realized that Logan had been taking the real thing all along, his mother said. The difference for him on the medicine was amazing, she said.

Following the initial three months of the trial, Logan received a prescription for the medicine and now takes it regularly, she said.

Logan is saying more words now — up to two- or three-word phrases — and is “much more socially aware of himself and others,” she said.

“Before, if a stranger talked to him in a grocery store, he would shy away” or panic, she said.

“Now he will actually talk to people,” his mother said.

Logan is now comfortable with a baby sitter coming to the house, so mom and dad can have an occasional date night, she said.

Her son is able to cooperate more with others now, and “understands about 99 percent of everything that’s said to him,” she said.

Logan continues to see doctors at Texas Children’s Hospital in Houston every three months as part of the study.

The doctor visits can be rough for Logan, his mother said; blood drawings from his arm are part of the routine checkup.

Kisamore said that after a particularly difficult visit for Logan, she sat down with her son and said, “I’m sorry we’re making you go through this, but it’s because you can have a better life.”

It seems to have made a difference in how he experiences his doctor visits now, she said.

Kisamore said that Logan will be able to continue receiving the medicine as long as research funding continues for the trial.

“That’s one of the reasons I go to Washington” every year, Kisamore said.

Kisamore has become an advocate for those with Fragile X syndrome. Every year she travels to Washington, D.C., for the National Fragile X Foundation’s advocacy day in March. This year the event will be held March 5-6. Kisamore and other parents from across the country will meet with representatives and senators to speak for continued research funding.

“This year I’ll be able to say, ‘Look at these results,’ ” Kisamore said.