Conrad Smiles: Fighting Locked-In Syndrome

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SAN ANTONIO, Texas. (Ivanhoe Newswire) — 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. (Read Full Interview)

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 conradsmiles.com.

Contributors to this news report include: Donna Parker, Field Producer; Bruce Maniscalco, Videographer; Cyndy McGrath, Supervising Producer; Gabriella Battistiol, Assistant Producer; Roque Correa, Editor.

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MEDICAL BREAKTHROUGHS

RESEARCH SUMMARY

TOPIC:            CONRAD SMILES: FIGHTING LOCKED-IN SYNDROME

REPORT:       MB #4338

BACKGROUND: Locked-in syndrome occurs when a person has no way to speak or produce facial movements. The affected person cannot communicate, but is aware of their surroundings.  They can hear, see, and have normal intelligence and reasoning ability but may only communicate with eye movement. The main causes are brainstem hemorrhage; in rare cases it is caused by trauma, tumors or infection. The syndrome is often discovered by the patient’s family members recognizing awareness in their family member, MRI and eye-movement tests that can help diagnose the condition. For most patients with locked-in syndrome, the prognosis is fair to poor. It is not preventable, but the risk of locked-in syndrome may increase in individuals with higher risk of stroke.

(Source: https://www.medicinenet.com/locked-in_syndrome/article.htm)

SYMPTOMS/TREATMENT: Symptoms and signs include global paralysis except for vertical eye movements and blinking. Coma-like conditions where the patient cannot respond or communicate other than eye movement. They can be unresponsive to painful stimuli, unable to withdraw an extremity from it. They cannot consciously chew food, swallow, breathe, speak, or move voluntary muscles. There is no specific treatment, but supportive care and communication by eye movements can help the patient survive and improve quality of life. Most locked-in syndrome patients do not recover lost functions; however, in rare instances, improvement in their condition may occur. Statistics suggest these patients, when given good supportive care that includes communication via eye movements, may have an 80 percent chance of 10 year survival; a majority of patients are adults that have increased risk for strokes.

(Source: https://www.medicinenet.com/locked-in_syndrome/article.htm)

NEW RESEARCH: “The research at UT Health San Antonio by Dr. Peter Fox and colleagues is groundbreaking because it shows that the injury suffered by Conrad and other children is not widespread throughout the brain, as was thought, but is actually confined to a single location.  The hope therefore is that an agent, when developed, could be delivered right to the site in a hospital emergency room. Drowned, resuscitated children seen in the ER could actually be saved from what locked-in children currently endure. The findings of the research also confirm, for parents such as Liz Tullis, that the personalities they see in their locked-in children are real, because the brain circuitry for emotions, perception, touch, etc., is largely intact.  That is comforting for these parents.”

(Source: The University of Texas Health Science Center at San Antonio)

FOR MORE INFORMATION ON THIS REPORT, PLEASE CONTACT:

Will Sansom

sansom@uthscsa.edu

If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at mthomas@ivanhoe.com.

Doctor Q and A

Read the entire Doctor Q&A for Peter Fox, MD

Read the entire Q&A