By RACHEL PARKER DICKERSON
LOG CABIN STAFF WRITER
Julie Phillips of Conway and her son, Zack Moix, are grateful to have a diagnosis and treatment for a condition that has been plaguing Zack. They are hopeful that their story can help other people who may have the condition that, although rarely heard of, is believed by doctors to be relatively common.
Zack was recently diagnosed with Antiphospholipid Antibody Syndrome (APS), also known as Hughes Syndrome or "sticky blood." His symptoms were extreme migraines he suffered from since he was a child, extreme fatigue and "brain fog," or lack of concentration.
Phillips said migraines are a common symptom of the condition, and for expectant mothers, multiple miscarriages are may also indicate the disease.
APS is an autoimmune disease in which certain antibodies cause the blood to form clots, which can cause heart attacks or strokes.
"His body thought it was under attack and started making blood clots to protect itself," Phillips said.
Zack said he has coped with migraines for several years, but the first time he noticed he was having fatigue was one day at church when he was struggling to walk up and down stairs.
"A couple of weeks before I was running up and down the basketball court," he said.
Phillips said her son appeared very breathless.
"His Sunday school teacher was (local pediatrician) Dr. Pebble Sutherland. She and I had discussed it. She kept pushing me" to take Zack to the doctor. "She didn't feel like (his condition) was normal."
Doctors determined Zack had pneumonia, but Dr. Bart Throneberry wanted to do additional testing. He sent Zack for a CT scan.
"He said, 'I know this is not going to turn up anything, but have this test,'" Phillips said. "It turned up multiple blood clots in (Zack's) lungs. It was frightening."
Phillips took her son to hematology doctors at Arkansas Children's Hospital, who worked to rid his body of blood clots in his lungs, legs and liver.
"We were really thankful for Dr. Throneberry, because if not for him, they might have just treated for pneumonia," Phillips said.
Within eight months, doctors had a diagnosis. Zack said some patients with his condition have gone two years without a diagnosis.
"We were so fortunate to have such brilliant doctors figure out the clues," Phillips said.
Dr. John Edit at UAMS, a vascular surgeon, put the diagnosis together, she said. He called her at work and explained all the details, she added.
"It's been quite an ordeal," she said. "(Zack) has missed tremendous amounts of school. He had to take shots in his stomach for about eight months. Now we're managing the symptoms. There's not a cure, but it's treatable if you have a diagnosis."
Now Zack takes blood thinners in pill form to prevent blood clots. He no longer has to take painful shots in his stomach.
"He's out of the woods as far as death is concerned," Phillips said of her son. "He has extreme fatigue; he has brain fog. Extreme fatigue was the reason he had to be home-schooled the last six weeks of school. The district really stepped in and helped us out."
Phillips said she has read in books on the syndrome that many times doctors think patients with APS are in the early stages of multiple sclerosis or Alzheimer's disease. Experts believe as many as 5 percent of people in the U.S. have APS. A blood test can indicate whether further testing is needed, she said.
"It's not like diabetes or something that's been around for a long time," she added. "Maybe people will recognize their symptoms and get tested."
The disease can be deadly, with the potential to cause heart attacks or stroke in teens as young as Zack, Phillips said. However, in some patients, it can be treated with low-dose aspirin.
"That's how they treat a lot of moms that have miscarriages," she said. She explained the reason pregnant women with the condition have miscarriages is because clots form in the placenta until the fetus cannot receive nutrients and oxygen through it. An online report about the disease said it is the cause of 20 percent of miscarriages. Once the syndrome is treated, however, the chance of a successful pregnancy increases dramatically.
Now that her son is successfully being treated, Phillips is hopeful about the future.
"I'm an elementary teacher. I'm not a doctor. But the things I've read give me a lot of hope," she said.
(Staff writer Rachel Parker Dickerson can be reached by e-mail at email@example.com or by phone at 505-1277. Send us your news at www.thecabin.net/submit)