McKayli Scudder: senior battles Guillain-Barré Syndrome

34

It was a day like any other day. Switzerland County High School senior McKayli Scudder – recently released to resume full activities after finishing five months of rehabilitation on a torn ACL she suffered during soccer season on September 12th – was participating in a conditioning session with her teammates in preparation for the upcoming track season.

“It was the end of January, a week after I was cleared from therapy on my knee,” McKayli said. “Practice was like a fun day. It was a Monday. We did dance videos and it was not that hard of a workout, but when I woke up the next day my legs were super-duper sore – which I thought was weird because no one else was sore.”

McKayli said that the soreness went away after a couple of days, but she said her legs started feeling ‘weird’, along with other issues.

“I noticed I was starting to walk funny,” she said. “It just kept getting worse. I couldn’t go up stairs, my legs just wouldn’t work. Then I fell in the shower.”

On Monday, January 30th, McKayli was walking down the hallway at her house, when her mom, Chastity, saw something strange.

“Mom was like, ‘why are you walking like that?’,” McKayli said. “I said, ‘what do you mean? I know I’m walking funny, but I can’t help it’.”

Chastity was battling a sore throat, so mother and daughter went to the Nurse-Managed Clinic at the Switzerland County Health Department to try and find out what was wrong.

The ultimate answers were far more than what they ever expected.

“They said that I needed to go get an MRI,” McKayli said of Nurse Practitioner Katia Stefanova. “From there, we left and went to Louisville.”

“Katia had called Lawrenceburg and Madison and asked if one of the neurologists could see here, but they told her to have us take her on to Children’s Hospital,” Chastity said.

“The guy told me that my muscles were just breaking down,” McKayli continued. “He said it was just a normal thing for athletes, you just reach this point. He said that it happens when you do a major workout, which didn’t make sense, because track practice was not that hard. I worked harder at therapy than I did at track that day.”

Thinking it was a temporary condition, doctors sent McKayli home and told her that if she wasn’t better in three weeks to come back.

It didn’t take 24 hours.

“I left school on Tuesday (January 31st) seventh period early, and I didn’t go back for like two months after that,” the senior smiled.

The diagnosis: Guillain-Barre syndrome.

According to the Mayo Clinic website, Guillain-Barre syndrome is a rare disorder in which your body’s immune system attacks your nerves. Weakness and tingling in your extremities are usually the first symptoms. There are fewer than 20,000 cases of the syndrome in the U.S. each year.

One of the best high jumpers in school history couldn’t even generate enough strength to lift her body off of the floor even inches.

“I thought she was messing with me,” Chastity said. “She’s like, ‘watch this’ (Chastity demonstrates trying to jump but keeping her feet firmly on the ground). “I said, ‘you’re a high jumper, are you messing with me?’ She said ‘no’. Her feet just wouldn’t come off of the ground.”

A trip to King’s Daughters’ Hospital in Madison, McKayli saw Dr. Ronald Auer, the orthopedic surgeon who did her ACL surgery; and a doctor whom she really felt comfortable with and trusted.

“I had been having pain in my lower back, so I thought it was a pinched nerve,” McKayli said. “That’s literally what I thought it was. They did blood work in Louisville, and then they did it again in Madison, and my levels had risen over 300 points in like 24 hours (protein levels in the blood).”

The high protein levels in the blood tell doctors that muscles are breaking down, leading to possible damage to the kidneys.

It was Tuesday, January 31st, the night of the first round girls basketball sectional game at Austin. Chastity brought McKayli to Vevay, dropped her off at home, and moments later a call came that McKayli needed to come back to KDH immediately and be admitted.

The KDH staff ran more tests, and on Wednesday McKayli saw neurologist Dr. Patrick Matthiessen, who watched her walk and perform other motions.

“Before he did a spinal tap, he said, ‘ I think it’s Guillain-Barre. Stay off of the Internet’,” Chastity said.

The spinal tap was performed on Wednesday, with the results coming back late that night.

“My spinal fluid tested positive and had high proteins in it, which is confirmation for GBS,” McKayli said. “Then I started treatments that night. Then on Thursday they transferred me to UC, and I was there until Sunday getting treatments.”

Even after she left UC, McKayli could still walk to some degree, but that began to get worse, as well.

On February 15th -McKayli’s 18th birthday – it was another trip back to the emergency room at KDH.

“She hadn’t gotten out of her wheelchair for three days, and I knew mentally, that she probably was getting worse,” Chastity said.

“I could tell my ankles were getting worse,” McKayli said.

If there is a silver lining in this dark cloud, it’s that there isn’t any pain associated with the syndrome.

“I think that’s the weirdest thing – there’s never been pain,” McKayli said. “Other than my back. It’s just weird.”

*

Her weeks now consist of three days of physical therapy. She’s back in school, attending first and second period classes on Mondays, Wednesdays, and Fridays; and then it’s off to physical therapy in Madison before returning to school for the final two periods of the day. On Tuesdays and Thursdays, no physical therapy means a gap during the school day, but some of that time is taken up with doctor’s visits. She’s been fitted with braces on her legs; and every day her work ethic motivates her to get better.

A big part of that has been her physical therapy team – Dave and John. Dave has been invested for quite some time, as he led McKayli’s physical therapy for her ACL recovery.

He also relived a high school memory.

He went to prom.

“I had a goal of walking for senior prom,” McKayli said. “I wanted to walk through. He was there and helped me do that. It was pretty special.”

He was also standing close by when McKayli was crowned on Saturday night on the front steps of the Conference Center at General Butler State Park; and he helped her stand and walk with the aid of a walker to the accolades from all who were there.

The community has also rallied to her aid. There have been several fundraisers already to help with expenses; and another will be held this Saturday night, April 29th, at the Jeff-Craig Firehouse from 4-9 p.m. There will be food and music and a huge silent auction.

“Everyone has been so amazing,” McKayli said. “We appreciate it so much.”

And what’s next?

“I keep working,” she said firmly. “I’m going to walk across that stage for graduation.”

Don’t bet against it.

– Pat Lanman