Rare Disease Threatens Toddler’s Life
Dana Aleman was beside herself with worry. Her 3-year-old son Levi was running a high fever. His dark brown eyes were bloodshot. Her active little boy was shockingly listless and would no longer eat or drink.
Although she had checked in with a doctor two days earlier, she and her husband, Omar, took Levi to the Emergency Department and where they were told he likely had tonsillitis. They were sent home with antibiotics. Only later would they discover that Levi’s rare disease wouldn’t be diagnosable until Day 5.
Just down the road from NorthBay VacaValley Hospital at 421 Nut Tree Road is the Vacaville Center for Primary Care, which opened in 2002 and now has nine physicians who specialize in everything from internal medicine and family practice to pediatrics and psychiatry. Here is a story of one of our primary care physicians.
Two days later, Levi was no better. He could no longer cry tears or urinate. His lips were cracked and bright red, and his tongue was swollen up like a strawberry.
Desperate, Dana took him to see Dr. Shahzad Anwar in Vacaville at the Center for Primary Care, a NorthBay Affiliate.
The diagnosis was as shocking as it was rare: Kawasaki Disease.
What’s more, Dana learned later, was that it was an extremely tricky diagnosis, because Levi wasn’t exhibiting all of the symptoms usually connected with the disease.
Kawasaki’s Disease is a condition that manifests by Day 5 of symptoms, says Dr. Anwar. “After consulting with pediatrician Dr. Matthew Heeren, I advised the Alemans to take their son to UC Davis Medical Center within two hours.” That began a 14-day odyssey for the family, with Dr. Anwar, and his team in constant contact.
The first day, the Alemans were told Levi was in Kawasaki Shock. His blood pressure had dropped too low, and they were told to prepare for the possibility of cardiac arrest or heart failure.
“During this time, Dr. Anwar called almost daily to check up on us, explain things we didn’t understand and give us pep talks,” recalls Dana.
Some doctors go entire careers without seeing Kawasaki Disease, she points out. “Dr. Anwar’s diagnosis was a judgment call and he made the right call. I choke up when I think about what would have happened had Dr. Anwar not been my son’s doctor. I am so grateful for everything he did. He listened to our questions and gave us options. He treated us like we were a part of the team and our input was valued.”
Today Levi doesn’t come close to resembling that lifeless little boy they carried in to the doctor’s office. He’s busy, bright, curious and stubborn. He likes to play with the family’s new baby chicks as well as their dog, and is doted on by his big sister, River. Want to take his picture? Well, he just might cooperate, if offered a popsicle.
“They say it takes a village to raise a child. I have learned it takes a team to save one.” —Dana Aleman
The Alemans learned that Kawasaki Disease is still a mystery in lot of ways. It is believed genetics plays a role, and environment can trigger it. “We learned how lucky we were that it was caught within 10 days, because he could receive medication. If it goes longer than that, the medication won’t work,” says Dana. “And of course the possibility of a heart attack or an aneurysm increases.”
Dana knows that it’s possible that there could be a recurrence. Levi will have to have an echocardiogram every five years for the rest of his life, just to be safe. But that’s a small price to pay, she says.
Dr. Anwar praises Dana for following her instincts and the NorthBay team for the successful outcome. “The phlebotomist’s ability to obtain adequate lab results within two hours on a dehydrated child was key,” he said.
In addition, he noted that Maureen Debb, an expert in managing complex cases, arranged for Levi to have access to the appropriate specialist centers quickly, says Dr. Anwar.
“Our son is doing well now. His heart is fine and he’s starting to resemble his old self,” says Dana. “They say it takes a village to raise a child. I have learned it takes a team to save one.”