Nicky, right, before he went to his prom this year.
Over the past two years, 17-year-old Nicky Richens’ life has transformed. He has found independence and a sense of freedom that he has never before known thanks to a small, discrete device called a phrenic nerve stimulator.
Nicky was born with congenital central hypoventilation syndrome (CCHS), a rare disorder that affects the autonomic nervous system and causes kids to essentially forget to breathe. Those that have this condition require 24-hour ventilatory support. The phrenic nerve stimulator, or pacer, can be concealed underneath clothes, provides up to 16 hours/day of breathing support and allows patients to be fully mobile.
“Pacers enable kids to get the health benefits of constant, proper oxygenation and ventilation without looking different or being restricted by it, which is huge in the life of a child,” said Maida Chen, MD, director of Seattle Children’s Hospital’s Pediatric Sleep Disorders Center. “With pacers, kids go on to have very meaningful lives because they are healthier, they feel better and they are free to participate in their life.”
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Thousands of children are diagnosed each year with hydrocephalus, a condition in which the body can’t properly drain the fluid that builds up around the brain. Physicians commonly treat hydrocephalus by implanting a shunt in the brain to carry the excess fluid to other parts of the body.
Shunts save lives, but too often they also lead to infections that can require multiple surgeries and leave patients hospitalized for weeks.
Physicians don’t know why shunt infections are so common, or why they sometimes come back over and over again. But an investigator at Seattle Children’s Research Institute may have found a clue to this longstanding mystery.
In a study published today in PLOS ONE, Tamara Simon, MD, MSPH, and her colleagues outline a discovery that could help understand, treat and prevent future infections. Researchers used genetic sequencing to conduct the first-ever inventory of microbiota – the complex assortment of bacteria and fungi – found in the cerebrospinal fluid of eight children with shunt infections. They identified a surprisingly large and diverse variety of pathogens, including many never before associated with shunt infections. This suggests that many different pathogens may conspire to drive the infections.
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Dana Lockwood, 24, has had epilepsy, a disorder of the brain that involves repeated seizures, for as long as he can remember. Seizures were just a way of life and the frequency ranged from having one every one to two weeks, to having several throughout a week, all while on several medications.
Dana most commonly experienced simple seizures, which he describes as brief and disorienting surges of mental energy. Occasionally he also had complex partial seizures, which impair consciousness, and very rarely he had grand mal seizures that involved his entire body and required a trip to the emergency room. There was no telling when these would occur.
“Living with epilepsy has been quite difficult,” said Dana. “I couldn’t drive, which was hard because there is little public transportation where I live. I had to be heavily medicated and it made it hard for me to be independent. In general, it was just very disruptive to my life.”
Dana had nearly given up on his dream of living abroad and teaching English as a second language. His seizures made that an impossible option.
Now, after undergoing a cutting-edge treatment in February, Dana is seizure free. He hasn’t had a seizure in more than a month and will finally be able to learn to drive and start living a more independent life.
So how did he get rid of his seizures?
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From the time Logan Ellingsworth was born in June 2007, it was clear he was a fighter. Born prematurely with a variety of health issues from exposure to methamphetamines while in utero, Logan had a difficult journey ahead.
Brenda and Randy Ellingsworth, Logan’s grandmother and grandfather who adopted him after he was born, remember the first time they saw him in the intensive care unit at the hospital.
“Out of all the babies in the room, I was surprised to see that one was actually raising his head up as if to see who was coming in,” said Brenda. “I asked the nurse, ‘Who’s this little curious one?’ She said, ‘That is your precious little grandson and he is going to be a fighter.’ I started to cry because at that moment, we knew he was going to have major obstacles to overcome.”
The First Step: Facing Cerebral Palsy
Among the host of medical issues Logan faced, he was diagnosed with cerebral palsy, a disorder of the brain that affects muscle tone and the ability to coordinate body movements. It is caused by an injury to the brain, which can occur when a child is born prematurely.
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