MUSKEGON, Mich. (WOOD) — Parenting comes with all kinds of challenges, especially if your child has a disability or illness that requires your full attention.
“We need to do more for our autistic community, especially those with other underlying health conditions,” said Alicia Randall of Muskegon.
Randall’s daughter Isabelle, or ‘Izzy,’ was born 6 weeks early. She spent 27 days in the NICU.
“At 6 months old we thought she was fine, just a preemie, but at 6 months old, she had her first seizure,” she explained.
Izzy was diagnosed with epilepsy by doctors at Helen DeVos Children’s Hospital. However, after getting a second opinion and genetic testing at the University of Michigan C.S. Mott Children’s Hospital, Randall learned her daughter had a rare disorder called Dravet Syndrome. It causes various health issues, including frequent seizures, behavioral and developmental delays, movement and balance issues, and much more.
“She had her first grand mal seizure at 18 months old, and prior to that, she was walking like a toddler, talking like one and then she had that grand mal. We’re not sure how exactly it affected things, but it triggered her nonverbal autism gene. She went from saying mama, dada, duck, dog… to nothing. I haven’t heard the word mom in a very long time.”
Randall explained that Dravet is considered an autoimmune seizure disorder because illness greatly exacerbates seizures.
“Case in point, (Izzy) was just recently sick with a cold and had three grand mal seizures because of the fever.”
According to the Dravet Syndrome Foundation, current treatment options are limited and those suffering from the disorder require constant care.
“(Izzy is) on four daily medications for her seizures, one of which is Epidiolex, which is the CBD oil that is FDA-approved for her Dravet Syndrome. Before being put on the Epidiolex, she was having two focal seizures a day and now she has two a month.”
Izzy still has dozens of absence (petit mal) seizures every day, which cause her brain to freeze up for 10 to 15 seconds. Doctors explained to Randall that these types of seizures aren’t harmful to the brain but, depending on their intensity, can be dangerous for the child as they carry out day-to-day activities.
“It’s also harmful to her learning because (her brain) literally is blank. When she comes back to we have to remind her what she was doing so it’s a delay in her education basically.”
The seizures have also caused significant damage to Izzy’s teeth. Randall said she has 12 cavities and six broken teeth, but because of her autism and seizure disorder, dentists recommend dental surgery with sedation. Helen DeVos is the only health system in West Michigan capable of doing this procedure. When Randall initially tried to book an appointment last fall, she was told the schedule was full for at least six months.
“Her specialist told me that all pediatric dental surgeries are through DeVos, so if she can’t get an appointment… I know she is not the only special needs child that needs to get her teeth fixed. That’s not fair to them at all because a lot of them are like her. They can’t vocalize if it’s painful, they can’t understand why their mouth hurts, some of them probably can’t eat as much and it’s not fair.”
Randall recently learned that Helen DeVos Children’s Hospital had appointments opening in April and was finally able to get Izzy on the books for April 5. Although it’s a small part of Izzy’s journey, it’s a win Randall doesn’t take lightly.
“I take the positives and make them huge, so her getting a surgery date… I literally threw like a dance party.”
Izzy has a long and difficult road ahead. Since Dravet Syndrome is a genetic mutation, she will battle it for the rest of her life. Randall is working with her daughter and two older boys on sign language and hopes to get Izzy a communication device soon. The 5-year-old will need intensive physical therapy to avoid having to get leg braces, as well as special education.
“At this point, all we can do is try to give her the best quality of life and stay on top of her seizures.”
Randall hopes that in advocating for her daughter, she helps bring awareness to other children dealing with challenges like Izzy.
“If they don’t have a voice, somebody’s gotta be the voice,” Randall said. “She’s been my warrior.”
You can follow Izzy’s journey here.