A long road back

6/29/2013

Editor's note: This is the first story in a two-part series about Cora Welch, an 11-year-old Lakin girl who had a rare attack due to Hashimoto's encephalopathy. Today's story delves into Cora's diagnosis and treatment, as well as her difficult road to recovery. Part two of the series, which will publish July 6, will be about how a local therapeutic horseback riding agency helped Cora overcome the physical and mental side effects of the disease and treatment.

Editor's note: This is the first story in a two-part series about Cora Welch, an 11-year-old Lakin girl who had a rare attack due to Hashimoto's encephalopathy. Today's story delves into Cora's diagnosis and treatment, as well as her difficult road to recovery. Part two of the series, which will publish July 6, will be about how a local therapeutic horseback riding agency helped Cora overcome the physical and mental side effects of the disease and treatment.

BY RACHAEL GRAY

Special to The Telegram

LAKIN — Cora Welch doesn't have a favorite animal. She loves them all.

From the numerous stuffed animals that line the Lakin 11-year-old's bedroom, to the two rabbits outside her back door, the two dogs that roam in and out of the house, the cats that perch on the household furniture, or the many live animal 4-H projects that Cora has, her love of animals is strong.

In late May, on a hot, windy afternoon, Cora, her mother, Denna Welch-Haney, and her stepfather, Scott Haney, prepared Cora's two pigs for a livestock show.

Cora and her mother scrubbed the pigs down, careful to wash all the dirt and debris from the pigs' hooves.

Water seeped into Cora's boots, in part from the wash and in part from Cora sticking the hose down into her boots to create a squishing sound when she walked. When the pigs were washed, she walked around squishing in the boots and laughing. The new boots were to be her show boots but were chewed by her new dog, Buddy. Cora had rescued the dog from the Finney County Humane Society.

"He really likes leather. He also chewed up some stuffed animals," Cora said, in the amused, not angry tone of a dog-owner.

Buddy's kennel is at the foot of Cora's bed, where he sleeps every night.

Cora always has an animal companion, and she always has a joke. The soon-to-be sixth-grader's spirit is jovial, despite what she's been through over the past year.

Cora's parents are grateful for her passion for animals. And they're grateful for Cora.

They almost lost her during the spring of 2012, when Cora suffered seizures from a rare case of Hashimoto's encephalopathy, a disease that is more commonly seen in middle-aged and older women. The auto-immune disease usually attacks the thyroid, but in Cora's case, it attacked her brain.

Now, thanks to the combined effort of doctors, family members, school nurses, classmates and activities instructors, Cora's parents are getting their little girl back.

Welch-Haney said that during Cora's hospitalization, she didn't know if Cora would survive. And if she did survive, Welch-Haney didn't know what kind of life she would lead.

"You start mourning that child. You don't just want that child back, you want her back the way she was. Even though that's selfish because there are so many people that don't get to bring their child back in situations like this," she said.

Cora's stepfather chokes up when he thinks about the times they almost lost her.

"She was so close to death many times. And now, here she is, celebrating her 11th birthday," he said last fall.

The episodes and diagnosis

On May 24, 2012, Cora was getting ready to fix a bottle for her bucket calf when she collapsed and began having a seizure. Haney called 911 after he found Cora face down on the floor. He turned her over, and she was having trouble breathing. An ambulance took Cora to the hospital, where doctors couldn't get the seizures stopped to run further testing.

Cora was flown to Wichita, where doctors tested her for meningitis. They also tested for the herpes virus, which can at times attack the brain. Doctors started her on an antiviral medicine. They also thought she had a possible stroke.

"The herpes virus came back negative. Everything they were testing for kept coming back negative," Welch-Haney said.

Doctors kept adding anti-seizure medications to try to stop the ongoing seizures. While on a ventilator, Cora came down with pneumonia.

"We came close to losing her to pneumonia. And then her kidneys started to shut down," Welch-Haney said.

Cora was sent to a specialist at Kansas City Children's Mercy Hospital, where she again was tested for the herpes virus in case of a false negative. She also was tested for West Nile virus.

Eventually, doctors brought in an endocrinologist to do a series of blood tests. She was diagnosed with Hashimoto's encephalopathy and prescribed steroids.

"Two days later, infectious disease (team) cleared her and they started steroids. About two days later, she finally stopped seizing. We were about 16 to 18 days in by that time," Welch-Haney said.

Although Cora was diagnosed and treatment had been started, her health still wasn't in the clear.

"You couldn't see them on the outward, but on the EKG, it was registering the seizures still," Welch-Haney said.

Doctors took Cora off of the ventilator, and she started waking up.

"I don't know how it is for everyone when they start waking up, but Cora wasn't like what you see in the movies when you're smiling and talking," Welch-Haney said.

By then, Cora was addicted to narcotics and had to be put on a methadone drip to combat the addiction.

"She wasn't really conscious, but she was constantly talking and seizing and singing songs, and mixing them up. And just kind of agitated. They thought she had ICU psychosis, which they said was common for as long as she'd been in. We got past that, and she started having hallucinations," Welch-Haney said.

Cora was restrained to the bed and then put on a feeding tube. Some of the medicine that had been prescribed to prevent the hallucinations had been instead causing them.

When Cora's condition began to improve, she was moved to the rehabilitation floor to start the process of learning to walk, feed and bathe herself again. She had to relearn a lot of it, but progressed quickly. She had an aversion to the texture of food at first and had to be on a feeding tube, Welch-Haney said.

"It was starting over with a little infant that can't do anything, to progressing where we are today," Welch-Haney said.

The symptoms

Cora doesn't remember much of her stay in the hospital. In fact, she doesn't remember much of the month leading up to the episode that landed her in the hospital.

Cora's parents had noticed a severe change in Cora's personality leading up to that time. She had been a happy, level-headed child, then she suddenly became an angry, dark child who was easily upset and frustrated.

"She was angry and explosive and throwing things. I don't think you could classify them as tantrums as much as all-out screaming and hollering," she said.

Welch-Haney said it hurt to see her daughter that way, but even more so, learning her thoughts.

"As much it hurts me to say, she was only 10, but she wanted to hurt herself. She would bang her head on things and would talk about how she didn't want to live and wanted to die," Welch-Haney said.

"She would hit and kick and say, 'I'm going to hurt you, Mom,' which is totally not my daughter. It had been building gradually."

In May 2012, Cora had headaches every day. Students and teachers had noticed her changing.

"That last month of school was hard, especially when you are taking your daughter to a counselor and it's not getting any better," she said.

Cora regrets how she treated her mother, teachers and other students.

"I felt really bad because my mom told me that because of what happened I was kind of mean before I went to the hospital, and I feel really bad about that," she said.

Road to recovery

Today, Cora is a smiling, animal-loving, active, rambunctious, funny 11-year-old.

It's been a process getting to where she is today. She is now off her steroids and has been working hard to lose the approximately 70 pounds she had gained while taking them. Since stopping her medication in February, she has dropped 20 pounds.

Over the school year, Cora made strides physically and academically.

A few students had made comments about her weight, but then were apologetic. Most stuck up for Cora, according to Cora and her fifth-grade teacher, Marilyn Danler.

"I got all A's and B's, and we took a reading test, and it said that I read at a freshman level second semester," Cora said.

Now, she's looking forward to being in sixth grade.

"My only problem is trying to figure out the lockers. We took a visit at the middle school, and I could not get the lockers to work. I'll probably just take the door off," she said, laughing.

Cora also participated in karate and in Miles of Smiles, a therapeutic horseback riding program in Garden City. She rides her bike, practices karate, swims and takes care of her rabbits, dogs, cats, hogs and goats to continue to be active.

Her school nurse, Gayle Enslow Tackett, said it's beneficial for Cora to be active.

In an interview in January, Tackett shared some of Cora's experiences at school.

"Anytime she feels like she's made a milestone, she comes right in and tells me about it. She's very proud of herself and very proud of her hard work. So is the family," Tackett said.

Danler said Cora's helpfulness to other students and the devotion to her animals is apparent.

"The things that she loves she is very devoted to, and she is a very helpful and caring person," she said.

Welch-Haney said she doesn't know what the future will bring for her daughter, but being aware of the disease has been a relief to Cora and her family.

The treatment so far has been effective. Cora is beginning to get back to the girl she was before her mood swings, hospital stay and steroid treatment.

"She laughs a lot more, and when she started laughing again, it's like we all took a sigh of relief and said, 'OK, she's coming back around.' It's just a huge relief, like we can finally move forward now," Welch-Haney said. "I had never noticed how much she stopped laughing and how much I had missed it until she started laughing again."

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