While many people have never heard of ITP, Immune or Idiopathic Thrombocytopenic Purpura, approximately 200,000 people in the U.S. suffer from the disease. ITP is an autoimmune disease that affects all age groups. And the cases are increasing- there are 20,000 new cases each year (“About ITP”). The scariest aspect of this odd disease is that the trigger is usually a mild illness, such as the common cold or vaccinations (“FAQ-ITP in Children”). I had never even heard of ITP until I my seven-year-old daughter exhibited the strange symptoms.
One morning my daughter said she felt a lump inside her cheek. I looked inside her mouth and saw a quarter-sized black lump. I asked her if she had been chewing on any pens. Then my husband suggested that maybe she bit her cheek during the night. We sent her to school and thought nothing of it. During the day the lump popped and her mouth was filled with blood. She rinsed her mouth out with cold water, and again went on with her day. She felt fine.
The next morning she woke up with two more lumps on the other inside cheek. I panicked, thinking, “Oh my God, they're multiplying.” Then I noticed blood was floating in the white of her eyes. We immediately brought her to the pediatrician. When removing her pajamas to help her get ready, I noticed petechiae (pronounced pe-TEEK-ee-ay), bluish-red spots the size of freckles, covering her body. We raced to the doctor, trying to hide our anxiety from my daughter, who still was feeling great.
In the office, I let out some of my fear by joking with the doctor, “You have to help me. My daughter is exploding!”
He examined her, noticed even more bruises on her body, took blood, and said he would run some tests. For a brief moment I wondered if he thought we abused her since she looked like she had been through a traumatic accident. But when he returned, he explained that she had ITP. Her platelet count was 20,000. Normal platelet count ranges between 150,000 - 450,000 per micro liter of blood (“FAQ-ITP in Children”). He said if her white count had also been low, that would have been a sign of leukemia; however, since her white count was fine, he believed it was ITP.
I felt my breath escaping in slower and slower intervals. Since he was comparing ITP and leukemia, ITP suddenly became more serious to me. He tried to calm our nerves by explaining that ITP is not fatal, and that 80-90% of all cases are acute, meaning they last one to three months and then the patient recovers completely (“FAQ-ITP in Children”). Usually the older the patient, the more chance it will lead to chronic ITP.
The doctor then asked if my daughter had a cold recently. She had. He explained further that often colds trigger acute cases of ITP. Normally, the immune system fights off cold viruses. In ITP, the immune system becomes “confused” and believes that a person's platelets are also viruses. Therefore, antibodies attack the platelets, and the spleen destroys them, slowly depleting the platelet count.
Since platelets are responsible for clotting the blood, the initial symptoms in my daughter were all typical signs of ITP. Her blood was not clotting properly, and since the mouth and eyes have the most sensitive blood vessels, those are the first to break. The petechiae and other bruises on her body were also typical signs; the smaller blood vessels in her skin were breaking all over her body.
Again, the doctor reassured us that while she appeared injured, all the symptoms were only superficial, neither permanent nor a serious risk to her health. However, he said that even in acute cases, the symptoms usually get worse before they get better; often the platelet count drops even lower. The lower the platelet count, the more chance of serious internal bleeding. If she was to have a serious fall or get into a car accident, she could bleed to death internally. Head injuries were particularly dangerous because she could bleed into her brain with no way to stop it. Because of this danger, he sent us to Children's Hospital in Boston.
Lucky for us, Children's Hospital in Boston is only an hour's drive from our house and it has a wonderful Hematology department that is currently running a national ITP case study. They have a comprehensive program dedicated to “to treat, educate and participate in research related to the management of ITP in children”. We couldn't have been in better hands. We arrived at 1:00 p.m. Unfortunately, we had to sit and wait for a series of tests at approximately three-hour intervals, while a team of doctors made decisions after each step.
