World MS Day: Kalianne's Story - Nemours Blog


World MS Day: Kalianne’s Story

At the young age of 15, Kalianne never expected to receive the challenging diagnosis of multiple sclerosis. Overnight, her world changed.

When Kalianne woke up sweating with chills and couldn’t feel the right side of her face or body, her dad immediately took her to the local ER. Kalianne was so nervous to be heading to the hospital, she got sick in the car on the way there. Once they arrived, Kalianne was whisked away for blood tests and a CT scan. After looking at her test results, the ER staff concluded that Kalianne was having severe headaches, which was causing the vomiting and other symptoms and then they sent her home.

A few days had gone by, and Kalianne’s symptoms continued to worsen. She was experiencing numbness in her face and tongue, her limbs felt heavy, and she was losing the ability to write clearly. After researching her symptoms on the internet, Kalianne’s parents decided to take her to the Wolfson Children’s Hospital ER. There, the neurology team from Nemours Children’s Health, Jacksonville met Kalianne for the first time.

Since their first encounter at the ER in October of 2021, Kalianne has been working with the Nemours Neurology team. During one of her follow-up appointments, Kalianne was diagnosed with MS. She was cautioned to watch out for “the big three.”

Multiple sclerosis, or MS, is a neurological condition that impacts the brain, optic nerves, and spinal cord, which make up the central nervous system. “The big three” are indications that a MS flare-up is coming: headaches, changes in vision, and overheating.

Since being diagnosed with MS, Kalianne has gone in for immunotherapy infusions every six months to keep flare-ups at bay. These infusions have been so successful that she hasn’t had a single flare-up since her original one in 2021. This preventative treatment has been so effective, Kalianne often forgets she has MS. “It doesn’t really affect me day to day and unless I have to go in,” says, Kalianne. “I don’t really think about it and it doesn’t impede what I see for my future.”

Kalianne and her family have had great experiences with Nemours Children’s and Wolfson. “The Nemours team has handled it so delicately and been so thoughtful,” says Cynthia, Kalianne’s mom. “I’m glad I Googled and found Wolfson’s ER and then Nemours. I knew Kalianne needed to see pediatric specialists because her symptoms weren’t going away even though the other ER sent us home. The Nemours has been with us the entire time, right from our first ER visit through today. Having a Nemours Neurologist as Kalianne’s doctor has made all the difference in the world for us.”

“There are a lot of resources out there and while it’s a very big change in your life, MS is really manageable,” Kalianne advises other kids with MS. “It’s important to catch it early because then you can get on treatment and prevent future flare-ups.”

“From our experience, I would say don’t assume it’s just a headache,” advises Cynthia. “Kalianne had these headaches and if we’d ignored that and the other signs and just hoped that it would get better, the outcome could’ve been much worse and caused more damage. I’m grateful I told my husband to take her to the children’s hospital. Going somewhere that specializes in children’s health made all the difference.”

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