The Faces of Guillain Barre 2017: Day 8; Part 1- Kaelyn

Monday, May 8, 2017 0 Comments

Hello, my name is Alicia Sappingfield, and this story is about my daughter, Kaelyn. I'm sorry that my dates are kind of off but I'm going to do my best to describe her story as I can.

Kaelyn is 10 years old, has always been the most vibrant happy playful girl. I want to call her story a Cinderella story, because she is one of the lucky ones.

Christmas Day 2016, just under a month from one of the most terrifying days of our lives. 

One week before MLK day Kaelyn was not feeling well, initially we thought it was just the flu, or that she was coming down with a bug that was going around. Well, the Thursday prior Kaelyn was very off. She was starting to walk funny, which we originally thought was because she had been laying down a lot. The Sunday before that Kaelyn was starting to walk like a drunk person, that she was becoming very unstable in her gait. So I thought that she had an ear infection. I took her to the doctor on the Tuesday after MLK day. They did a urine test and found that Kaelyn had a terrible UTI, they figured that it was just her being dehydrated. That night my daughter was screaming in pain, had to crawl to and from the bathroom and that night I had to put her in and out of the bath tub because she couldn't even stand. When she got out of the tub she fell and hurt herself, so I immediately called the 24 hour nurse, they recommended that she go to the Emergency Room so we did. 

In the hospital bed at the Emergency room. 

They took tests and found that she didn't have any reflexes in her lower extremeties and her tests were coming back pretty bad. They recommended for her to be transported to Rileys Children Hospital in Indianapolis Indiana. We arrived there early Wednesday morning and were put on the 8th floor. We had many tests, met with Psychiatrists -- they thought it was psychosomatic, that Kaelyn was pretty much making up her condition. So that Friday after waiting, doing our own research speaking to neurology we had had enough. 

We were getting no answers, and Kaelyn wasn't getting any better. So her father and I demanded to speak to someone who could give her a MRI and get the spinal done. That Saturday she has her tests done. And that Saturday Kaelyn was diagnosed officially with Guillan-Barré Syndrome. Kaelyn was officially having to be walked only a few steps to a commode to go to the bathroom, couldn't even shower on her own. 

Kaelyn was given 5 days of IVIG treatments. Kaelyn suffered hives from the treatment. During the treatment process as Kaelyn gained strength she was able to go down to the Kidz Zone. Kaelyn endured Physical Therapy and Occupational therapy. She has to go in a wheelchair if she wanted to go long distances. 

Kaelyn meeting a TE from the Indianapolis Colts

After 5 treatments, (over the course of 5 days), and 2 days later Kaelyn was well enough to transfer to the Physcial Rehab portion of the hospital. Kaelyn endured physical and occupational therapy twice a day for a week. At the end of it she was able to come home. 

Kaelyn with her favorite therapist Jake. He came to say goodbye to her. 

She returned home and had 5 sessions (over the course of 2 weeks) of outpatient physical therapy. She had a goal to be able to go dancing with her dad for the daddy daughter dance on February 10th -- and she made that goal with flying colors 

Kaelyn had a follow up in March. It went amazingly well. She saw the physical therapists who were very excited about how far she had come. She then saw her neurologist who was incredibly happy with how much she accomplished. She is 100% back to every activity she loved doing before. She still has no reflexes in her legs and may never get that back, but overall she's a true success story. 

I call Kaelyn one of the lucky ones because I have seen so much worse.