Throughout the morning, Vickie Siculiano was doing activities with her 3-year-old son, Sean.
“I try to bring it into something that’s not just something to sit and play with, but sit and learn. And that’s just what I can do because I sit a lot,” Siculiano said.
She was diagnosed with multiple sclerosis in 2007. It’s a condition where an overactive immune system attacks the brain, spinal cord and optic nerves. Her mom, Debi Smith, said she was in denial when she first heard her daughter had MS.
“You start to think, what did I do? You know, is it me? Did I not take care when I was pregnant with her? Is it something genetic that I don’t know about,” said Smith.
She has something called primary progressive MS and only 10 percent of people with MS have it. Hackensack University Medical Center’s Dr. Florian Thomas says for those patients there wasn’t a treatment available to slow down the disease progression. That was until last year, when the FDA approved the first one, Ocrevus.
“There are different approaches in calming down this overactive immune system. Ocrevus does this by eliminating a certain type of white blood cell, a lymphocyte,” Thomas said.
Thomas says the attraction to this treatment is that it’s a twice-a-year infusion, which is compatible with an active lifestyle like Siculiano’s.
“She had the two half doses and then she just had the full treatment last time, and she can stand longer. I know that. When we take him [Sean] to ‘The Little Gym,’ she used to have to sit on the chair. She doesn’t do that anymore. She stands, with the crutches, but she stands there,” Smith said.
But Thomas believes that the more effective a treatment, the more risk a patient will have from activity. He says Ocrevus is an aggressive treatment.
“Now that we have over 15 medications for multiple sclerosis, we can tailor a medication to a person’s individual needs. These needs are impacted by their perception of risk versus benefit,” Thomas said.
“When you have a three-year-old, it is not his fault he was born into this, so I need to make his environment as positive as I can,” Siculiano said. “Physically being able to lift him and walk with him is impossible for me, but I can lay on the floor with him all day. He can roll over me and we do pony rides.”
“In 2008 I retired and we bought this house together and I’m downstairs on the ground floor. I’m not down on the floor with him. But I will take him, and when he needs it, I will hold him and walk with him,” Smith said.
“She’s a huge help. I can’t do this without her,” Siculiano said about her mother.
Thomas says there are still many things about MS that we don’t fully understand yet.
“I think any of the medications that have been introduced in the last 15 years have raised the bar further in terms of efficacy. And I think I’m much more comfortable that many of my patients will reach the goal of dancing at their grandchild’s wedding in 2018 than I was 20 years ago,” Thomas said.
Three-year-old Sean is helping his mom get there.
“Sean seems to sense sometimes that she needs a little extra hug or something and he’ll come over,” Smith said.
“He’s a really, really smart little boy,” Siculiano said.