In February 2017, 16-year-old Kailey Poole from Pierson, Florida, was diagnosed with the flu. She was hospitalized and received breathing treatment for a few days, but then was able to resume her normal activities after a week or so.
But Kailey wasn’t getting better; she was getting worse. Her eyes began drooping, she was feeling very weak and didn’t have the energy she once felt.
Her family’s long journey to find answers was about to begin.
The Start of Kailey’s Battle
Kailey had been a very active softball player who was used to having long days — and the energy to make it through them.
“I started noticing I wasn’t hitting the ball as hard. I wasn’t running as fast. I wasn’t throwing as hard…it seemed like little things, but people started thinking I was getting lazy and didn’t want to play anymore,” Kailey said. She grew more and more frustrated by the way she felt.
In the summer of 2018, Kailey’s symptoms started to worsen. Her eyes were drooping for longer periods of time without relief, so her mother, Melissa, took her to the emergency room. They performed some tests to rule out a brain tumor, as Melissa recalls, “I was really scared. I thought she had a brain tumor. She was there for a few days and had scans and bloodwork done. They told us Kailey was stable enough to be discharged, but she could barely see at that point.”
Leaving the hospital without any answers was frustrating for Kailey and Melissa. They were sent home and told to visit specialists while they awaited some test results. Doctors speculated that perhaps Kailey had Graves disease, and one mentioned myasthenia gravis, but nothing was confirmed — and Kailey wasn’t feeling any improvement.
Looking for Answers
Kailey had multiple other hospital stays after that — traveling all over the state of Florida looking for any type of reasoning to explain her feelings.
“We were getting nowhere. Her symptoms were getting worse. She was having weakness in her arms and legs and continued to be referred to different specialists across the state,” said Melissa.
At a hospital stay in Miami during the winter of 2019, Kailey was admitted and began receiving intravenous immunoglobulin (IVIG) treatment, which seemed to provide some relief. Once she returned home, she was even able to play in a softball game again. Though not feeling 100%, Kailey was doing better than she had in a long time.
A few weeks later, Kailey returned to Miami for a follow-up visit and was told her symptoms were all psychiatric.
“They told us there was nothing we could do, and that we just had to accept it,” Melissa said. But she and her daughter knew that wasn’t right. They had to discontinue the IVIG treatment that had been helping Kailey, and they left Miami feeling defeated once again.
Continuing the Journey
“We felt like the next step at that point was to go to Philadelphia, because I had read about a very good children’s program that I thought could help Kailey. While we were making plans to visit Philadelphia, though, Kailey had an incident,” Melissa said.
She was playing softball in April when she collapsed on the softball field. Melissa came to the field and was shocked to see that Kailey couldn’t move her legs at all, so her boyfriend drove his truck onto the field to get Kailey and drove her to the ER. Kailey was short of breath when they arrived and was given anxiety medications and breathing treatment because the hospital staff suspected she may have been having a panic attack. Nothing helped her, and eventually she was intubated.
After spending a couple of days at the hospital again, Kailey was told by another specialist that her symptoms were psychiatric. She was discharged from the hospital again with conflicting doctor recommendations, some thinking she could have a neuromuscular disorder, others still suspecting it was psychiatric.
“My weakness was getting a lot worse. I was having trouble walking just from room to room, taking a shower, doing simple everyday things. I knew I wasn’t crazy though and I knew this wasn’t in my head,” Kailey said.
Finally, Some Relief
Kailey and Melissa did end up traveling to Philadelphia a few months later, in July 2019, where a physician gave Kailey a myasthenia gravis diagnosis and began treatment with medication.
The plan from there was that Kailey would continue the treatment started in Philadelphia with a local doctor in Florida, but that didn’t go as well as they hoped.
“When we returned home, we couldn’t get her infusions set up once per month like they were supposed to be. We couldn’t get help with her medication or therapy. Our phone calls weren’t returned,” Melissa said. From there, they were both feeling let down and defeated. Melissa found a support group in Orlando for the two of them to attend and hopefully hear from others who were in similar positions.
“Kailey was missing a lot of school and she was getting depressed,” said Melissa, adding, “We needed help.”
It was at this support group where they met Dr. Nivedita Jerath, a neuromuscular specialist with AdventHealth. Dr. Jerath happened to be speaking at the event, and when Kailey and Melissa introduced themselves and shared a bit of Kailey’s journey so far, Dr. Jerath wanted to help. Melissa recalled, “Immediately when we met her, she gave us her cell phone number and said we could call or text at any time. We were seen at her office the following day.”
“I was blessed to be able to see Kailey after we met at the Myasthenia Gravis Hope Foundation meeting in Orlando,” Dr. Jerath said. “Because Kailey was not doing well, despite being on Mestinon, IVIG, and high dose prednisone treatment, and she was developing possible life-threatening breathing difficulties, we all decided the next best step would be to do a thymectomy. We were able to find a thoracic surgeon at AdventHealth, Dr. Joseph Boyer, who could do minimally invasive thymectomy,” Dr. Jerath explained.
Kailey’s surgery was performed in late October, and since that time, she’s finally starting to feel like herself again. Dr. Jerath and her team were able to set Kailey up with in-home IVIG treatment, which she’s been continuing on a regular basis. Close attention to medication management and oral immunotherapy medications were added to her treatment plan. And since surgery, Kailey has also been doing regular physical and occupational therapy.
The combination of these treatments and the thymectomy surgery has left Kailey in a much more positive state of mind.
“I have noticed improvements just in the first few months since I started seeing Dr. Jerath. Now, I have slowly started getting back into softball. I almost never thought I would be able to do that again. I still have a way to go, but physically and mentally I’ve gotten a lot better,” Kailey said. “I’ve been an athlete since I was seven years old and it was so hard for me to physically be unable to do sports. Getting back to it, even slowly, is so exciting,” she added.
More on Myasthenia Gravis
Dr. Jerath describes myasthenia gravis as “An autoimmune neuromuscular disorder that causes fluctuating muscle weakness made worse with activity and better with rest. This fluctuating weakness is caused by the immune system attacking the connection between the nerve and muscle called the neuromuscular junction.” The muscle weakness can cause double vision, droopy eye lids, fatigue, problems with chewing, swallowing, breathing difficulties, and arm or leg weakness.
It’s a relatively rare condition, with approximately 20 cases out of 100,000, and is unfortunately not preventable. Myasthenia gravis can occur at any age, but females are more commonly affected at a younger age (under 40) while males are usually at an older age (older than 50).
“Kailey has done extremely well after her surgery and since we adjusted her medical treatment plan,” Dr. Jerath shared. She would recommend anyone experiencing neuromuscular issues to contact our neuromuscular center and schedule an appointment by calling Call407-303-6729. More information on our neuromuscular programs can also be found by clicking here.