A turn for the better: Clay Schnose making progress every day | TSLN.com

A turn for the better: Clay Schnose making progress every day

Clay Schnose has been battling Auto Immune Inflammatory Central Nervous System Disorder since last July. He is currently undergoing physical therapy and occupational therapy, as well as prednisone and other treatments. Photos courtesy Schnose family

Prior to last June, Clay Schnose, a junior at Hot Springs High School, was an average teenage boy, a rodeo kid, avid fisherman, and deer hunter. He worked for his uncle, Tom Schnose, on his ranch, as well as helped him with his pipeline business. After work hours, he devoted himself to rodeo practice, where he would work on techniques for his recent love, calf roping, as well as his old love, team roping. That all came to a sliding stop last September.[Text Wrapping Break]After fighting canker sores on and off all summer—not an uncommon occurrence for Clay, but never to that magnitude, according to his mother—a doctor’s appointment was scheduled in late July. Clay had been severely fatigued, ran low-grade fevers, and could hardly eat due to the pain from the canker sores.

The first doctors visit resulted in a prescription for Acyclovir and a mouthwash to numb the pain. Not noticing any improvements, three more future visits to different providers in the area yielded no more than, “It’s a virus, it just needs to run its course,” said Kimberly Schnose, Clay’s mother.[Text Wrapping Break]On Sept. 4, Clay came home from school early with an excruciating headache. He was having a hard time gripping his pencil with his right hand well enough to keep up with taking notes, and he was fatigued.

The next day, he was taken into their local clinic to be seen by their family provider Fall River Health Services in Hot Springs, South Dakota, and was treated for severe dehydration. After receiving IV fluids, and he seemed to perk up. The next day, his mom noticed the right side of his mouth had started to droop when he smiled. Thinking maybe it was just due to possibly swelling of the sores in his mouth, she disregarded it until the morning of Sept. 8. A fever, coupled with the slurred speech and right-side weakness, meant a return to the clinic in Hot Springs, and as they were walking into the building, Kim noticed Clay was dragging his right foot, almost stumbling a couple times before getting in the building.

When the nurse came to do the evaluation, she weighed Clay, and they learned he had lost about 20 to 25 pounds since his symptoms had appeared. Again, the medical professionals felt he was suffering from dehydration and started him on IV fluids. At the end of the third liter of fluid, Clay hadn’t shown any marked improvement, so he was sent to the ER.

Once there, Dr. Bender, the doctor on rotation that day, had a CT scan done on Clay’s head. Results concluded Clay had swelling on the brain and several lesions. He suspected Clay was also suffering from meningitis, but the best way to determine that was a lumbar puncture.

“He said, ‘I think you need to get him to Rapid City; I think he has meningitis,’” Kim said.

Clay was immediately loaded into an ambulance headed for Rapid City where a lumbar puncture was performed to withdraw spinal fluid for testing. The test confirmed meningitis, and with the noted encephalitis from the CT scan, the ER pediatrician on call recommended being flown to a facility with a pediatric neurologist; the closest in South Dakota being at Sanford Children’s Hospital in Sioux Falls. They were received at 1:30 a.m. Central Time by an ER doctor, concerned that Clay was presenting signs of going septic.[Text Wrapping Break]“That’s when I thought, ‘Holy cow, I could lose him,’” Kimberly said. “Five years ago, I lost my husband to colon cancer; it was just scary to do this alone. It was a couple of days before my nerves were calm again.”[Text Wrapping Break]Sanford Children’s Hospital was Clay’s home for a week, and while he was surrounded by loved ones, including close friends from Minnesota with whom he hunts and fishes annually, very little progress was witnessed. Of all the tests performed that week, the only disease that came back positive was mycoplasma, but the positive reading wasn’t a high enough percentage to cause the problems he was experiencing, according to his Infectious Disease doctors at both Sioux Falls, and later, Denver. At this time, Clays diagnosis was Meningoencephalitis.[Text Wrapping Break]“They administered high doses of IV Vancomycin and Acyclovir to get his symptoms controlled, and then, when he discharged, I took care of administering the Acyclovir through his PICC line using a gravity flow pump that I had to connect and disconnect twice a day for two weeks,” Kim said. “We were home for a week, and he started exhibiting neurological changes again. So back to the hospital and again he was life flighted back to Sioux Falls, where he was treated for another week.” This time the diagnosis became Auto Immune Encephalitis.[Text Wrapping Break]Clay was able to return back home to Oelrichs for only nine days before his next life flight occurred. He had a clinical follow up, so his mom took him back to Hot Springs. Unbeknownst to either Kim or Clay, when the nurse did the prescreening evaluation, Clay’s blood pressure was elevated, and he was running a moderate temperature.

Given Clay’s history, and still taking antibiotics, these symptoms an issue needing to be addressed. Their family provider recommended the University of Colorado Children’s Hospital in Aurora, Colorado.

“They had two shots in Sioux Falls, and he wasn’t getting better,” Kimberly said.[Text Wrapping Break]The children’s hospital collected him by life flight within a couple hours, and Kim followed down the next morning. A multitude of tests—a third spinal tap, another MRI, an unknown number of labs, a brain biopsy— all came back negative. No clear solution could be found for the most-disconcerting symptom, inflammation in the brain, so his became Auto Immune Inflammatory Brain Disease.

“The team of doctors, consisting of Rheumatology, Neurology, Infectious Disease, and several other specialties, determined it was time to begin treating the symptoms in hopes of stopping anymore progression,” Kim said. “Given the symptoms, they decided to begin a high dose, 1,000 mg IV, of Prednisone over a five-day period to tackle the inflammation. Along with the prednisone Clay was also receiving a couple of intravenous immune globulin, IVIG, treatments to boost his immune system, a few antibiotics, and medications to protect his organs from the potential damage the antibiotics could do.”

As his condition finally took a turn for the better, rehabilitation medicine entered the equation to regain strength in his right side. By the time he left Colorado, three weeks later, he was walking without a noticeable deficiency.

Clay was home for 12 days—over deer season—before displaying neurological changes; he began dragging his right leg again, slurring his words more, exhibiting mental confusion and emotional outbursts more than usual. He was admitted to Rapid City Regional this time, and after collaborating with the on-call neurologist in Aurora, Rapid City administered another round of high-dose steroids.

One the third day, just after Thanksgiving, Clay’s symptoms failed to improve enough to consider his symptoms controlled, and the provider in Aurora was prepared to life flight Clay back to Children’s Hospital, but a blizzard blanketed the entire Rocky Mountain region and extended north to the Black Hills. The life flight crew from Rapid City declined transport, so Children’s Hospital crew took the risk. With a collaborative effort with the ground ambulance, the flight crew was on the ground for less than 20 minutes and headed back to Aurora with Clay. Kim followed after the snow had subsided and roads were cleared.

Once Clay arrived in Aurora, another MRI was completed on him, this time on his head and upper body. The results showed new lesions on his spine, explaining the changes in his physical abilities and indicating the disease was able to progress despite the prescribed prednisone, antibiotics, and other treatments.

A PET scan was performed to rule out any other new lesions elsewhere, which came back negative. This new discovery of lesions on his spine now changed his formal diagnosis to Auto Immune Inflammatory Central Nervous System Disorder, and it was time to get more aggressive.

Following the recommended protocol of a Canadian institute that specializes in inflammatory brain disease, Clay participated in a series of five plasmapheresis treatments, which clean his blood of any antibodies to give his body a fresh start, three more IVIG treatments, and begin the first of seven infusions of a drug called Cytoxan.

“Although Cytoxan is classified as a chemotherapy drug, cancer was ruled out for Clay through the MRI and PET scan completed. The dosage Clay would receive is very low, with minimal side effects,” Kim said. “This combination proved to be effective, and we were able to come home Dec. 9; the longest we had been home since discovering Clay’s ailments in September.”

The location of his lesions on the brain affect his behavior and emotions, so Kimberly was advised to monitor her son’s impulsive tendencies. His emotional outbursts are lessening each day, and his impulsivity is nearly nil.

Clay started back to school Jan. 7, four months after his last attendance, and to start it was just for an hour a day. After his first day back and seeing how well he tolerated it, the school increased his class load to a full morning schedule.

“He has a full load in the morning, and he’s handling that pretty well. He wants to do full days, but I’m not sure he’s ready,” Kimberly said. “He has physical therapy and occupational therapy in Hot Springs, and he’s supposed to be starting speech therapy soon.”[Text Wrapping Break]Clay is itching to be back on a horse and has been offered a familiar mount, one loaned to him last year when his sister, Mykelsi, had his calf-roping horse at college to use competing in breakaway. Frank and Marla Peters’ horse, Sierra, was used in years before by their son Matt, then their daughter Courtney, in high school.

“When a conflict arose with Clay’s high school rodeo season and Mykelsi’s college rodeos getting postponed and rescheduled, the Peters’ offered up Sierra to Clay to use for tie down, and they got along well,” Kim said. “Sierra is a pretty calm and quiet horse, which is exactly what Clay needs to get reacquainted with riding again. Our horses are either too crippled, not broke yet, or too energetic to trust with Clay yet, or not ideal for him to get back with the program anyway.”[Text Wrapping Break]On New Years Eve, he finally laughed for the first time in four months, much to the relief of his mother, and he smiles now without being prompted. His smiles are usually a result of talking about horses and rodeo, though he will have to return to riding in a safe manner.

“He needs to ride with a helmet; what he had was similar to a traumatic brain injury. He can’t afford a head injury,” Kimberly said. “Just this morning he was looking at the state high school rodeo calendar and said, ‘I think I’m going to take regionals this year.’”[Text Wrapping Break]Chris and Nicole Glines’ indoor arena south of Oglala has been like a second home to Clay and a few other rodeo boys in the area, and he has spent his Sunday afternoons there, as he did before. It has been good for Clay’s healing and recovery to be around that atmosphere and camaraderie, his mom said.

“Clay has a long road to recovery, to regain his strength, balance and cognitive skills,” Kim said. “He will likely be making trips to the Denver area every couple of months for a while to keep up with his change in progress and to make sure he doesn’t go backward.”

To help the Schnose family with future ongoing expenses, Nicole Glines has arranged an online fundraiser for Clay on the Southern Hills Rowdies page on Facebook. To donate items to the fundraiser, call or text Nicole Glines at 605-454-2022 or message her on the Southern Hills Rowdies Facebook page.

The auction will open at 7 p.m. Feb. 1 and close at 7 p.m. Feb. 10. Funds may also be donated to the Schnose family by PayPal through njoyglines@gmail.com or by mailing a check to Black Hills Federal Credit Union, where an account has been opened in Clay’s name.

“The goal is definitely to cover their deductible for 2019,” Nicole said. “They’re going to have a lot of medical expenses. We want to release the burden a little bit.”