Finding a Way to Live with Pediatric MS

Finding a Way to Live with Pediatric MS

On the first day of fifth grade, Bryan Yglesias woke up feeling weaker on his left side. He walked with a limp, and over the course of the day he felt worse and his speech began to slur. His parents, Nick and Kathy, took him to the hospital, but the doctors could only give him steroids because they were not sure what was causing the problem.

The second time Bryan went to the hospital was a couple months later. He experienced delayed movement in his hands and his leg wasn’t fully functioning. He and his parents were told by doctors that the cause could be a tumor or Lyme disease. “We were freaking out over all the horrible things it could be,” recalls Bryan.

The third time he went to the hospital, Bryan was diagnosed with pediatric multiple sclerosis (MS). “We were actually a little relieved,” he says, “that it wasn’t life threatening.” But then the doctors told him he could never play sports again, that he would have to cut back on most of his activities. Bryan’s dad, Nick, remembers when they got the diagnosis: “We thought he’d be in a wheelchair the rest of his life.” The first doctor advised to keep Bryan out of the sun, out of the cold, “just pretty much keep him home and don’t do anything,” says Nick.

After speaking to other physicians, Nick and Kathy were told that Bryan would know his own limits. They should allow him to do the activities he wants to do and not hold him back. Nick wishes he had known at the beginning not to listen to the doctors who said he was paralyzed. Luckily he and his wife chose to keep Bryan active.

When Bryan was diagnosed with MS, he was only 10 years old. He was involved in club soccer and basketball. When his right hand was paralyzed at his initial diagnosis, Bryan says that was the most difficult thing. He had to be on independent study from school for a month until the medicine kicked in and he was able to regain movement. The last time Bryan had severe paralysis of arms, Nick had to force him to work out and go to physical therapy. It took Bryan two years to get back to normal.

At the time, the biggest thing for Bryan was to not let any of his friends know what was going on. “I didn’t want any special treatment or anyone to feel sorry for me,” he says. “That wasn’t me.” Attending a summer camp specifically for kids with MS in Big Bear, CA, helped Bryan become more comfortable with talking about his diagnosis. At the camp, kids talk about how having MS affects everyone differently. “I learned there that it’s okay to tell people,” he says.

Now Bryan is 17 years old. He is in the top 30 students in a class of 700 at his school, class president and an officer in the student body. He participates in varsity soccer, cross country and tennis. He is looking at colleges. Bryan wants to do physical therapy because of how it has helped him strengthen his muscles but also because it will be a means for him to stay connected to the world of sports. Nick talks about how hard Bryan has had to work to get to where he is now. “He goes nonstop,” Nick says. “I won’t let him stop because he might miss out on something he should have done, and who knows when it could be the last time he walks.”

Bryan and his family go once a year to visit his doctor at the University of California, San Francisco to monitor the progression of the disease. Bryan takes an injection once a week of medication that helps to keep him stable. His parents are very conscious of his diet. Nick explains that some of the drug companies who distribute Bryan’s medication offer support groups. They invite families to hear people speak about MS. “It’s helpful every time we see someone dealing with the same stuff,” Nick says. “This has been tougher on me than on him.”

Many people are surprised when they hear that someone so young could get diagnosed with multiple sclerosis. Bryan thinks it is important to help people understand that it can affect kids, too. To kids with MS, he offers advice: “Don’t let anyone hold you back. Know your own limits.” Bryan’s dad agrees that the best thing they have done for him is to keep him busy all the time. “No way we’re going to let him sit around.”

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