Sporting Good Health
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It takes a village to raise a child, and in medicine, it often takes a village to treat one.
Such is the case for the Folsom family. In the spring of 2007, their son Adam was examined and treated by six different specialists from Children's Hospital & Medical Center.
A routine check-up in March with Children's Hospital & Medical Center pediatrician Phil Itkin, M.D., showed that 7-year-old Adam's hemoglobin was a little low. "Nothing alarming," says his mother Jill, "but he was slightly anemic."
A normal hemoglobin level in a child of that age is above 11 grams per deciliter of blood, according to Dr. Itkin. "Adam's was just below the normal level," he recalls. Dr. Itkin prescribed an iron supplement and a few weeks later, Adam returned for a second blood draw. Surprisingly, the levels had dropped further.
When the next round of iron supplements failed to elevate Adam's hemoglobin, and other symptoms such as abdominal pain followed by a rash and joint pain presented, Dr. Itkin's concern grew. The Folsom children had been his patients for some time and he had the advantage of reviewing Adam's medical history from office records. "Adam's fortunate in that with our office, he has a medical home," says Dr. Itkin. "And that allowed us to track his issues well."
At this time, Adam's stomach distress increased, indicating the need for a gastroenterology consultation to rule out the possibility of Crohn's disease or irritable bowel disease. The family met with the Children's pediatric gastroenterology team and learned Adam's GI tract was healthy.
More tests were ordered by Dr. Itkin.. An MRI of Adam's back and stomach showed no disease process, but the symptoms continued to impact the boy's life. As the school year ended and baseball season commenced, his mother noted that Adam, usually a high-energy athlete, was flagging. He couldn't run and he was easily fatigued. He often asked his parents, "When are they going to find out what is wrong with me?"
The next set of tests was scheduled with Dr. David Gnarra, M.D., a Children's pediatric hematologist and oncologist. Dr. Gnarra's CAT scan revealed a tumor resting in front of Adam's kidney, behind the bowel. Dr. Gnarra feared lymphoma (cancer of the lymph nodes.)
The Folsoms were told that surgery was necessary to remove the tumor to determine its pathology. The following day, Jill and her husband Jim met with Children's pediatric surgeon and oncologist, Shahab Abdessalam, M.D.
"Adam had been examined by so many doctors and had endured so many tests, we asked Dr. Abdessalam if we could meet with him without Adam being present, and he was receptive to that," Jill Folsom says. She notes that their experience with the doctors and staff at Children's during Adam's illness was one of collaboration. The family's questions and concerns were as seriously considered as the needs of their child.
"By this time, many well-meaning people had urged us to seek treatment outside of Omaha," she recalls. "But we decided we weren't going anywhere. We had experienced the best so far, and we knew that eventually we would have the answer."
On the 18th of June, Dr. Abdessalam removed an 8 cm tumor from Adam's abdomen while his family waited to hear the results. Pathologist Christine Reyes, M.D., notified Dr. Abdessalam of her diagnosis: Castleman's Disease.
"Castleman's Disease (CD) can attack all ages of life; it's completely random," explains Dr. Abdessalam. "Fortunately, it is fairly rare, and I think that's what makes making the diagnosis as difficult as it is, just because people don't consider it. I certainly didn't before I did Adam's operation."
CD is a lymph node disorder, Dr. Abdessalam says, which can mimic the symptoms of inflammatory bowel disease or lymphoma. It has two manifestations. One is unicentric, affecting only a single node, such as in Adam's case. Removing the tumor is the cure, and recurrence is rare. The other form, called multicentric, affects more than one node and is far more serious.
Adam's presentation for CD was classic. "The symptoms were all there: ankle edema (swelling), anemia, elevated sed rate, fatigue, night sweats, pallor, abdominal pain, lack of growth and thrombocytosis (excessive number of platelets in the blood)," says Jill Folsom. "It just took all these experts to tie it together and come up with the answer."
Adam's recovery was swift. He was released from Children's well in time to ride his bike in his neighborhood's 4th of July parade. At his most recent check up at Dr. Itkin's office this spring, the once pale and scrawny child has regained his strength and nearly doubled his weight, reports his mother.
Jill and Jim Folsom feel their family's experience with the physicians and caregivers at Children's was not unique. Says Jill: "We could have gone elsewhere, but we found the best right here in Omaha at Children's."