Catherine Lee of Hampton is a “make it all better” kind of mom who is the first to admit that she absolutely dotes on her boys, 3-year-old Brian and 5-year-old Shaden. “As a mom,” she says, “you always feel you can fix everything. That’s what was so hard for me about Brian’s illness. I just felt so helpless.”
Brian Shaarda’s story started last October as a run-of-the-mill ear infection. A doctor at an urgent care facility diagnosed it and prescribed a course of antibiotics.
“The next day, Brian was really sleepy,” Catherine said. “I couldn’t get him to eat anything or drink much. I had a bad feeling about that because normally on those five-day antibiotics, they’re much better by the next day.”
On the third day, Brian seemed a little better. That afternoon, Catherine made him some Jell-O and lemonade and got him all snuggled on the couch to watch cartoons. Then she walked to the other end of the room to get him the TV remote. “When I turned around, something was really wrong,” she recalls. “His eyes were rolled back into his head. I picked him up, and he was unconscious, completely limp.”
Terrified, Catherine called 911. Brian remained unresponsive, even after the EMTs arrived. “I rode in the ambulance with him. When we were only a block away from the hospital, the EMTs told the driver to pull over so they could ‘get a line in,’” Catherine recalls. “That really scared me. I thought I was going to lose him.”
Brian’s first seizure started just as they were getting him out of the ambulance at the hospital closest to their home. It lasted 15 minutes. The second one started soon after the first one stopped, and Brian never woke up between them. Doctors at the community hospital did a CT scan, but it gave no clues to help them determine what was making the boy so sick. Neither did a spinal tap. With no answers to guide them and seizures continuing despite medication, Brian’s doctors called in CHKD’s Transport Team to move the boy to Children’s Hospital of The King’s Daughters.
CHKD’s specialists soon had Brian’s seizures under control. He was admitted to the hospital through the Emergency Center, and by the wee hours of the morning, he was on the 8th floor under the care of pediatric neurologist Matthew Frank.
Dr. Frank was worried about Brian’s condition after the seizures. He said, “Kids will often feel very sleepy for a few hours after a seizure, but then they bounce right back. Brian wasn’t waking up like we expected.”
“It was horrible to see him like that,” said Catherine. “Brian was always my rambunctious one – so full of life. It was shocking to see him that still. I just couldn’t believe it.”
The next morning – still just four days after Brian had been diagnosed with the ear infection – he was getting an MRI and an EEG, tests that might reveal something the earlier tests hadn’t.
“I finally went home that afternoon to shower and change my clothes,” Catherine recalls. “Dr. Frank called me at home and said that the MRI revealed what was wrong. He said Brian had ADEM – which stands for acute disseminated encephalomyelitis,” she said.
“ADEM is an inflammation of the brain caused by damage to the myelin sheath, a fatty covering that acts as an insulator on nerve fibers in the brain,” Dr. Frank explained. ADEM usually occurs in association with a viral or bacterial infection. “It’s very rare and hard to diagnose without an MRI. We tell patients that it’s not something anyone else on your street or in your neighborhood has ever had or probably even heard of. But because we’re Children’s Hospital, we see two to three cases a year.”
Although Catherine was relieved to have a diagnosis, she still had a huge question on her mind: “Is he going be OK?”
That one was harder for Dr. Frank to answer.
“Many children recover completely from ADEM with no residual effects. Others recover but have lingering deficits,” he said.
“There was no guarantee that he would come out of it the same child,” Catherine said. “But at that point, I was more concerned about his survival. I could handle anything but losing him.”
“The standard treatment for ADEM is high-dose steroids,” Dr. Frank said. “Steroids calm inflammation and children usually begin to improve pretty quickly.”
Brian, however, did not respond to the steroid therapy.
Luckily, Dr. Frank had an ace up his sleeve. “In recent years, research has shown that children with ADEM who are resistant to traditional steroid therapy alone may improve with the addition of intravenous immunoglobulin therapy – IVIG,” he said.
Immunoglobulins are components of human blood that help to fight off harmful bacteria, viruses and other germs. IVIG therapy is used to treat many disorders, among them chronic immune neuropathies characterized, like ADEM, by myelin damage.
“They started the IVIG on Friday, and by that night, he was starting to wake up a little,” Catherine said. “By Saturday morning he was eating everything in sight, and by Saturday night he was the noisiest kid in the hospital. We were home by Sunday. I think they had to discharge us so the other kids could get some rest!”
At home, Catherine watched Brian closely for signs that the inflammation had damaged his brain. “For the first couple of days,” she recalls, “he was kind of smiley and spacey – not his normal feisty self at all. But by the end of the week, he was fighting for toys just like always.”
Brian has had several follow-up visits with Dr. Frank, who says the toddler should have a normal childhood with no lingering effects of his ordeal.
In fact, he may not even remember it.
But his mother will.
“It was a wake-up call I didn’t need,” she said. “My boys are their mama’s heart and soul. I was faced with the possibility of outliving my child. If it weren’t for CHKD and Dr. Frank, I don’t know if he would be here today. I’ll never forget it. And when I look at him today, I am just so grateful.”
Dr. Frank practices with Children’s Specialty Group PLLC at CHKD.
This story was featured in the first quarter 2005 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.