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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Kristin Crow got a big surprise when her little bundle of joy arrived prematurely while she was visiting family in Texas in November 2011. She gave birth to her son, Skyler Crow, who was born at 28 weeks, weighing just two pounds, seven ounces.
When in utero, Skyler had been diagnosed with ventriculomegaly, or enlarged ventricles in the brain, and he developed hydrocephalus soon after he was born while in the neonatal intensive care unit (NICU) in Texas.
Hydrocephalus is one of the most common congenital conditions in children, affecting 1 in 500 to 1,000 births. It is a condition where cerebrospinal fluid (CSF) doesn’t reabsorb properly in the brain, causing a harmful build-up. This can cause problems with the development and function of a child’s brain, and without treatment, hydrocephalus can be deadly.
The traditional treatment for hydrocephalus is surgery to implant a shunt, or a small tube, that drains spinal fluid from the brain ventricles down to the abdomen where it is absorbed. Doctors told Kristin and her husband that a shunt was their only treatment option.
“I was terrified as shunts come with a lot of risks,” said Kristin. “There’s a high rate of infections, complications and we would be in the NICU for a very long time, possibly more than five months.”
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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 had periventricular leukomalacia, a white-matter brain injury, and was later 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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