SETH’S STORY

ITP in a 4-Year-Old Boy Who Recovered Without Specific Treatments
March 2007

Seth’s parents took him to the emergency room when he was 4 years old because bruises covered his body. The bruises had been notable for about two weeks and started only where he usually had them, such as on his shins. His parents grew concerned however when they continued and appeared on his arms and back. When he developed “little red spots” all over his body the family took him to the local emergency room. It was late in the day when they took him to the crowded emergency room and had to wait for test results.

When the results came back, a complete blood count (CBC) showed that Seth had very few platelets. The doctors told Seth’s parents that based on his labs and physical exam, they were considering it “possibly leukemia.” They instructed them to take him immediately to the emergency room at the Children’s Hospital.

When Seth arrived at the Children’s Hospital it was now midnight and he still had to undergo more exams and laboratory tests by the new doctors. His parents waited without a clear diagnosis and feared the worst. “We feared that this was leukaemia and that Seth would die,” his Dad recalls. Fortunately, when the laboratory tests came back the only thing wrong with Seth was an extremely low platelet count (3,000, normal is over 150,000) and nothing else. Seth was diagnosed with ITP and told to follow up in the haematology clinic in the morning. The doctors spoke with the haematologist on call and decided it was not necessary to give Seth any medicine since he had no major bleeding.

The hospital experience

In the morning Seth came to the haematology clinic. He had no new bleeding although he was still covered in bruises. His platelet count was 6,000 and his blood looked normal under the microscope except for the low number of platelets. He had a normal red blood cell count and a normal white blood cell count. On exam, Seth had no enlargement of his liver, spleen, or lymph nodes. Seth did indeed have ITP. There was no evidence of leukaemia either on the examination or from the laboratory data. The doctors spent a lot of time during that visit reviewing the diagnosis of ITP with Seth’s family and talking about the treatment options available for a boy like him.

The parents received an informational booklet about ITP that described the diagnosis of ITP. It also had important information on things to avoid when the platelet count is low, like aspirin and ibuprofen which can decrease the functional ability of the few circulating platelets, roughhousing, and contact sports. Reasons to call the doctor were outlined along with the appropriate phone numbers of the staff. All this information was useful in reassuring the family and providing education. But, the family still believes that the best thing was the time the doctors spent with them reviewing all the possible treatment options. They knew that they would have to keep him from roughhousing at home and give him options for more “quiet activities”, but thought this was the best thing for him.

Early schooling

Seth continued to go to his regular nursery school and the parents spent time going over the diagnosis and restrictions with the teachers. His Dad stated, “Boys will be boys. Care and explaining to everyone (family members, friends, and school staff) about his condition was important. I was very, very protective at first. Seth acted perfectly normal when he was diagnosed with ITP so it was hard for him to understand why we would restrict him from certain activities. He said, ‘I feel fine, Dad, I’m OK!’.” Despite feeling good, he was restricted from bike riding, playground activities, roughhousing with his brother, and recess during preschool.

They measured Seth’s platelet count again in one week and then every couple of weeks, and it continued to be low. Despite this, he had only mild bruising and no serious bleeding, such as nosebleeds or bleeding from his gums. The family stood by the decision to avoid medication and watch him. He did so well that even though we had established a return appointment in one month, he was lost to follow-up.

Seth came back 1 month later for a check-up and much to everyone’s delight had a normal platelet count of 243,000. So Seth has had a full recovery from his ITP with watchful waiting as his treatment. Seth is now a healthy six-year-old boy active in baseball and tennis. He is doing well in school. Because of his diagnosis, he learned about hospitals and what they do. Looking back on the whole experience his Dad said, “He had no side effects and did well. This is why I’m glad ITP can be treated with close monitoring rather than medication.” The family says that they would have done everything the same way again.

Update: February 2011

Seth continues to do well and has not required any further visits to our clinic or treatment for his ITP. The family knows that they can always call us if they notice that he starts bruising or bleeding again, but fortunately, this has not happened. Seth is now a healthy and active boy who only sees his doctors for regular checkups.

Comments by Dr Cindy Neunert
Seth’s story illustrates the natural course of most cases of ITP in children. ITP is one of the most common disorders bringing children to the attention of a pediatric hematologist. The majority of children with ITP will have bruising and petechiae like Seth, but more significant bleeding is uncommon. The disorder can be alarming when children are first seen. The underlying fear is that the child has leukaemia or is at risk for serious bleeding. His parents recall very clearly the fear that their whole life was about to change.

Coping with the condition

Seth’s case also illustrates several points about the management of children with ITP. First, a physician experienced in diagnosing ITP can make the diagnosis by performing a physical exam and evaluating the blood under the microscope. However, a typical emergency room prioritizes the most serious potential problems, just as leukemia was the initial consideration when Seth first went to the emergency room. In most cases, if everything else is normal, a bone marrow examination to rule out leukemia or cancer is unnecessary. Seth’s parents felt comfortable because the doctors spent a lot of time with them explaining the diagnosis and management options.

Seth is a delightful little boy who despite having ITP was completely unaware that he was “sick”. Like most children with ITP, what Seth needed was time. Most children will recover and never have any further problems after several months. While it took Seth longer than most to recover, his ITP “disappeared” in the end. In my experience, ITP will completely resolve in most children Seth’s age within approximately 6 to 8 weeks. He is now a youngster who is doing great and enjoying all of his normal activities. He is full of energy and keeps his parents busy. Seth has a very small chance (1-2%) of having another episode of ITP. He is not at risk for other blood disorders or cancers because of his ITP. Unlike adults, most children Seth’s age with ITP usually resume their normal childhood activities. They only have memories of visiting the hospital.

Update 2011:

Seth’s ongoing story brings to light a very important fact about ITP in children. Full recovery from ITP occurs in most children and recurrence is rare. Full recovery requires documentation that the platelet has risen to the normal range without recent medication. Even in children with ITP who seem to recover quickly, we request another platelet count six months following diagnosis to be certain that all is well. At that time, once we have documented two normal platelet counts, we feel comfortable that the children should not have more trouble with ITP.

Most of the time the cause of the new episode, just like the cause of the initial event, is unknown. Some children have been reported with as many as four or five separate episodes of “acute ITP”. Likely, these are not separate events, but rather that these patients had borderline thrombocytopenia some or much of the time without any bleeding that brings them back to the doctor. Currently, we are studying this at our center by monitoring children with resolved ITP over an extended period to determine if their platelet counts drop below normal even after considering the first episode of ITP resolved.There are even cases where a person with apparent acute ITP as a child develops such a recurrence 20 or 30 years later or rare cases where pregnant women who had ITP during childhood give birth to babies with temporary thrombocytopenia.