GRAND RAPIDS, Mich. – An update from a doctor and the mother of a 14-year-old Michigan girl with EEE demonstrated the devastating effects of the disease and how long it can take to recover.
Savanah DeHart, 14, of Portage, Michigan, complained Aug. 16 of a severe headache and was acting dazed and lethargic, according to her mother, Kerri Dooley.
READ: What is EEE? Michigan health expert answers our questions
When Savanah's symptoms worsened overnight, Dooley took her daughter to the emergency room at Bronson Methodist Hospital in Kalamazoo. Savanah's condition continued to decline, and by the following morning, she needed a ventilator to breathe, officials said.
Savanah DeHart during her recovery at Mary Free Bed Rehabilitation Hospital in Grand Rapids (Photo: Mary Free Bed)
Nine days later, Savanah was diagnosed with Eastern equine encephalitis, a mosquito-borne virus that has infected 10 Michigan residents this year. Four people have died from the illness, officials said.
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Savanah spent weeks in the pediatric intensive care unit at Bronson, according to officials. She became stable enough Sept. 5 to be transferred to Mary Free Bed Rehabilitation Hospital in Grand Rapids, officials said.
Savanah is undergoing intensive rehab with Mary Free Bed Kids under the care of Dr. Douglas Henry and a team of pediatric specialists, according to health officials.
Mother tells story
Dooley said Savanah is a freshman at Vicksburg High School who likes to play sports and is very artistic. She draws, sings, bowls and plays softball and volleyball.
"Aug. 16, she started acting a little bit different," Dooley said. "She had a severe headache and just kind of lethargic and zombie-like, is what I call it."
The family took her to the hospital Aug. 17, and four medics had to get Savanah out of the car because she didn't want to go inside, Dooley said.
"Once we got in there, she was assessed, and they brought her immediately back to a room and sedated her, did a spinal tap, MRIs," Dooley said. "The first couple of hours were very, very busy. They decided originally she had meningitis, so they took her up to the pediatric ICU where, eventually, she was on a ventilator the next morning."
Savanah was officially diagnosed with EEE on Aug. 26, Dooley said.
"All we know is it was a mosquito bite," Dooley said. "We have no idea. The timeframe prior to is four to 10 days before they see anything going on, so she could have been at practice, she could have been at home, she could have been with her dad. We have no idea.
"The hardest part was Aug. 22. That was the day they told us that she wasn't going to make it. The swelling got so bad that it went into her spinal cord, and they didn't think there was any return from that. From that day to now is a complete flip. She was able to somehow fight that off, and the swelling started to go down."
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Within a week and a half, Savanah was transferred to Mary Free Bed Rehabilitation Hospital.
"She's beating the odds," Dooley said. "Even when we first came here, I don't think her prognosis was all that great. She's doing things that they didn't think she was going to do or sometimes a little quicker than they thought she might. She's definitely beating the odds of what everyone thought.
"We don't know if she will completely recover. We don't know if she'll ever walk again or talk again or anything like that. When she was at Bronson, she had mini strokes as well, so she has some ischemic brain damage there, which they don't know if is reversible or not."
Hear Dooley's full story in the video below (from Mary Free Bed).
Dooley said Savanah begins her day around 8:30 a.m. with speech therapy. That includes massaging the mouth, throat and chest and rubbing her gums to try to get her voice to come out.
Then, they do occupational therapy, which includes everyday tasks such as brushing her teeth and getting dressed, which she can't quite help with yet, Dooley said.
Savanah also has physical therapy such as stretching, exercising and sitting up in bed. They use a tilt table to hopefully help her walk again, her mother said.
Once she's finished her routine, they rest for a while and then do the process over again for shorter periods of time, Dooley said.
"She's very good with her right arm," Dooley said. "She can lift that pretty easily. Her left arm is a little more difficult. So when we have a ball in her hand, (we tell her), 'Hit the ball,' or we stand next to her (and say), 'Hit your mom. Hit your dad.' She's moreso moving her head to the left now, so we can tell her, 'Turn your head to the left.' We might have to help her a little bit, but once she relaxes, her head goes. Simple things, really, to you and I, but not so much to her at this point. But it's been pretty awesome to see."
Dooley said she hopes her daughter can eventually make a full recovery, walking, playing sports and going to school. In the short term, she wants Savanah to be able to communicate with them.
"I just want her to be able to say, 'Hi, mom. Hi, dad,' and hug us," Dooley said. "We keep being told it's a marathon, not a sprint. One of the doctors here -- well, he was a resident here -- his words to us were, 'We just keep on keeping on.' I just keep telling everybody that. We just keep on keeping on."
Learn more about Savanah's recovery in the video below (from Mary Free Bed).
Doctor provides details on Savanah's condition
Henry provided an update on Savanah's condition and recovery in a video provided by Mary Free Bed.
"She's completed the acute treatment of the illness, where they had to help her breathe and manage other aspects of her medically," Henry said. "Now she is not as involved medically, and we can spend more time focusing on our rehabilitation efforts."
Henry said Savanah is seeing several different rehab specialists, including physical, occupational, recreational and speech therapists.
"We're all working on different aspects of her neurologic recovery, but then working as a team to make that recovery as full as it can be," Henry said. "Savanah is making progress. It's slow, steady progress, but it is progress. She's still pretty limited. She cannot say any words. She cannot move her arms or legs very well. But she is starting to follow some commands, and that's very encouraging."
Henry said since doctors have seen some progress, they expect her to continue to trend in the right direction. He said they aren't sure how much she'll recover or how long it will take.
"This has to be very frightening for Savanah to be in this state," Henry said. "I believe she is pretty aware of the state that she's in, and it has to be very comforting to have her parents there on her bedside.
"It's hard to tell when she's minimally responsive what is going on in her brain, how much she understands of what's going on, but it seems like she does have some understanding of who's in the room and perhaps of the conversation, as well. Some of the clues that we look at for neurologic recovery are consistent movements in a certain way."
Doctors look to see if patients are able to follow movements with their eyes or follow directions, Henry said. Savanah hit the milestone of being able to consistently follow a simple direction.
"Sometimes it's a few second delay, but she can follow a direction to, say, move either one of her arms, and that's huge," Henry said. "The ability to follow a command is very huge. It takes a lot of connections to follow a command. You have to hear a message. You have to process it. You have to decide that you're going to follow that command, and then your brain has to be able to make those muscles move to follow that direction."
He said Savanah following directions is a good sign that a lot of her brain is working.
"No child, no family expects this to happen, and it comes out of the blue and it can be very devastating," Henry said.
Savanah's parents have been very supportive and realistic throughout the process, doctors said.
"Fortunately for Savanah, because of her age, we generally see younger brains recover better after an injury, a virus, a stroke, so we're more optimistic with her than we may be if she was much older," Henry said.
You can hear from Henry in the video below (from Mary Free Bed).
More on symptoms, dangers of EEE
Henry said EEE can infect humans and animals, often causing severe brain damage or death in humans.
"Those symptoms -- the headache, the stiff neck, the high fever -- show up about three to 10 days after a bite from an infected mosquito," Henry said. "The virus attacks different areas of the brain, and different areas in different people. But it attacks those areas and causes damage much like a stroke or a head injury, and that damage to a large extent is permanent. But then the brain can recover."
He said anyone who has these symptoms should seek medical attention immediately in case it's EEE.
"Unfortunately, there's no treatment for EEE," Henry said. "There's no vaccine, as well. We simply have medical treatments to support patients, and then we have rehabilitation strategies if they suffer neurologic consequences."
About 30% of people with EEE die from the illness, according to Henry. Many who survive have permanent severe neurological problems, he said.
The treatment for neurologic symptoms of EEE is similar to how doctors rehab patients with traumatic brain injuries or strokes, Henry said.
"If someone suffers neurologic consequences from EEE, then rehabilitation is very important," Henry said. "They may have many different neurologic problems, and different disciplines can work on different aspects of your functional deficits to improve your function. If you look back in history, there's very few cases in Michigan, as well as other states, per year. This is a big jump in the number of cases that we've had in Michigan. We don't know yet what next year's going to hold. Public officials are going to try to get some answers to that."
You can hear more about the symptoms in the video below (from Mary Free Bed).
Family grateful for support
Dooley said the family is getting support from people all over the world reaching out to them, donating and offering prayers.
They've created a #SavanahStrong page with 4,500 members. The volleyball teams at her old and new schools bought shirts and held "Savanah Strong" games, Dooley said.
"We hear from people all the time," Dooley said. "Everywhere we go, people ask about her.
"Some days are good. Some days are bad. We have a ton of support around us, so that helps."
Dooley writes #SavanahStrong update posts each night.
"When she's ready, when she can look at you and say, 'I did it,' her face will be out there, for sure," Dooley said. "She's fighting and she will get there."
You can hear Dooley talk about the support the family has received in the video below (from Mary Free Bed).