Finding a key to locked-in syndrome

SAN ANTONIO -- (11/22/2017) -- It’s called locked-in syndrome and frequently occurs when children drown and are resuscitated but are left with brain damage. These kids are unable to speak or move, but are aware of what’s going on. Researchers using imaging technology now believe the damage is confined to a tiny area of the brain, paving the way for new treatments with this groundbreaking research.

Conrad Tullis was a healthy, happy baby, until he was 17 months old, fell into a pool and drowned 13 years ago. Doctors resuscitated him, but a stroke left Conrad with massive brain damage.

“You know an infant needs maximum assistance for everything, you know, their eating, their movement from one place to another. But these kids grow and they’re cognitively aware,” Conrad’s Mother, Liz Tullis, explained to Ivanhoe.

Liz established the ‘Conrad Smiles Fund,’ recruiting parents and researchers, who also believed their kids had potential.

“Seventy percent of families that participated in the study indicated that in the acute setting when the child was first admitted in the hospital, the recommendation they were given by their neurologist was to withdraw care, because their child would never recover in any meaningful way.” Peter Fox, MD, Director of Research Imaging, UT Health San Antonio explained.

But, some kids did get better, listened to music, recognized friends, even communicated.

Dr. Fox continued, “They answer by eye blink, they can spell things out by eye movement control on a computer.”

Tullis said, “To me, what’s so important about this research is now we have the science behind us. You know so it’s exciting cause now we’re building from what we knew and what we developed. If we can make something better out of this for other people, that’s something that’s so satisfying.”

By the way, the reason the fund is called Conrad Smiles, is because doctors told Liz and her husband that Conrad would never smile again. You can find out more at the Conrad Smiles website - see the related links section of this story.



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