Our son, David, was discovered to have a low platelet count in April 2010, at which time he was hospitalized in nearby Brunswick, Georgia. He was 14 years old. He received a treatment of Intravenous Immunoglobulin (IVIg), and his platelets rebounded. At the time, they diagnosed David with idiopathic thrombocytopenic purpura (ITP).
Several weeks prior to his hospitalization, David began experiencing frequent nose bleeds, but we didn't notice any increased bruising. As it turns out, his primary indicator of low platelets is bleeding from the nose. Other people get a lot of bruising, too, but David just doesn't bruise much.
Due to a work relocation in August that same year, we moved to Purcellville, Virginia, a northwestern suburb of Washington, DC. After our move, David was hospitalized several times, usually with very low platelets. The lowest platelet count we recollect him having was around 1,000 (a normal platelet count is 100,000 or higher): He is usually between the 30,000 and 50,000 range.
When we moved to Virginia, David began seeing a hematologist at Children's National Medical Center's Children's Cancer and Blood Disease Center of Northern Virginia. This new hematologist positively diagnosed David with Evans Syndrome in February 2011. In March that same year, we got a second opinion from Dr. Bussel, at Cornell Medical Center in New York City. Dr. Bussel suggested removing David's spleen, however, we opted not to do that.
On July 3, 2011, David had a severe nose bleed that lasted more than six hours. We were visiting family in New Jersey at the time, so we took him to Robert Wood Johnson Hospital. The hematologist there confirmed David's Evans Syndrome diagnosis. He received a dose of IVIG, and his platelets rebounded.
David responded well to IVIg treatment, but had another incident in October 2011. This time, his platelets didn't go up to an acceptable level, and both leukocytes (white blood cells) and platelets were being affected. He was treated with CellCept, responding well, but developed severe back pain, so he was taken off this drug in December 2011.
After CellCept, David's platelets were in the 50,000-60,000 range without any medication, and his white counts were elevated, as well. However, now in March 2012 we see that his platelets are again dropping.
David experiences extreme fatigue, pain, and weakness in his extremities to the point at which he is practically immobile. He has missed a lot of school this year…too much. He gets frequent headaches, and recently has been complaining of stomach pain. The doctors really don't have a lot of information to inform or comfort us.
The Evans Syndrome Community Network (ESCN) Facebook page has been a blessing to us. Sharing the experiences and information has provided more intelligence for us to maneuver and manage through this. The doctors never told us to see a rheumatologist or an immunologist: It was ESCN's Founder, Constance McNamara Romanowski, who did. While they provided no answers to David's ailments, at least we were able to check them off the list, and got a battery of tests done for the record.
Plotting a course through Evans Syndrome has been a very frustrating ordeal. As a parent with a sick child, you feel helpless when your son says, "Just find out what's wrong with me." The Evans Syndrome Community Network Facebook page has been a comfort during this difficult trial. We appreciate all the people--sufferers, families, and parents--who are sharing in this trial. If we all keep sharing information, we will be able to deal with this in a more intelligent and prepared manner. Thanks to all of you for not shutting down, but opening up and sharing, so that we can inform each other and our healthcare providers ~ who may one day find the key that unlocks this mystery.
Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.