Just Breathe Mom

I am writing this blog about a blood disorder that I’m pretty sure many of you don’t know about. I didn’t know anything about it until my second son’s recent diagnosis. It’s not very common, but doesn’t discriminate and can happen to anyone. My objective is to educate anyone who is unaware of this potentially dangerous blood disorder as well as some of the symptoms. Also, I hope this story will be a reminder to listen to your gut instinct.

A week and a half ago, my almost 3-year-old developed a weird looking rash on his chest. It almost looked as if someone took a fine-tip red marker and put dots all over him. The rash was flush to the skin and didn’t change color when pressed. It was unlike anything I had seen before, so I started to do some research on the Internet. It didn’t take long to pull up various sources describing the rash as petechiae (peh-TEE-kee-ay). Everything I read said to seek immediate medical treatment for your child.

At this point, anxiety is starting to fill my veins and I begin to pester my husband to read the information that I found. He was in the middle of trying to put the baby to sleep and didn’t see an urgent need to quit the process. He thought our son’s rash was probably some sort of heat rash. I on the other hand was becoming increasingly anxious and finally told him that he needed to go look at the articles, because I thought that we needed to take our son to the ER. In actuality, I had already decided that he was going to the hospital. I just wanted his confirmation. Our next step was to call the family doctor. The doctor on call said that we could probably wait out the rash over the weekend. I’m giving her the benefit of the doubt that she didn’t understand what we were describing. Thank God that the certainty I had for him to be seen by a doctor was overpowering. By this time, the rash had spread to every part of his body, including the inside of his ears, face, and behind.

Off we went to the hospital where he was born. The ER doctor said that in his ten years he only saw this rash a few times. The times that he saw it, the kid was really sick. My son acted perfectly normal and you wouldn’t know that anything was wrong him. Lab results came back that said his platelet count was 4,000. I had no idea what that meant. Embarrassingly, I wasn’t even exactly sure what your platelets did. Science, chemistry, medicine all fall under the same category as math for me… foreign language. I’ll quickly describe the function of your platelets for other right-brainers like me. Your platelets are the sticky cells in the blood, which are important in clotting and help to stop bleeding. A normal platelet count is between 150,000 – 450,000. As you can see, my son’s count was dangerously low. What does this mean? It means that if he were to get in an accident or even bump his head then he could bleed in the brain or internally.

Luckily, we live near a reputable children’s hospital and were sent to their ER for treatment. After more lab work and process of elimination he was diagnosed with ITP or Idiopathic thrombocytopenic purpura. (People with ITP, form antibodies that destroy their blood platelets.) With the lab work, they check the white blood cells to rule out leukemia. Thankfully, the doctors are almost certain that is not the case with our son. A few days later, he had his first visit with a hematologist at the same hospital. His platelet count didn’t increase after his first treatment in the ER. (He was given a blood product by vein in the ER called Win Rho to stop the destruction of platelets.) The hematologist then ordered an infusion of another blood product (IVIG) to boost his platelet count. The infusion lasted over 5 hours. The little trooper sat there patiently the whole time hooked up to an IV.

We won’t find out until Thursday the results of the IVIG treatment. Each week he will have his blood drawn and they will look at his platelet count and go from there. Until then, we have to be extremely careful with him and make sure that he doesn’t get hurt, particularly his head. It’s no easy task keeping a 3-year-old boy from getting hurt, especially one with a 4-year-old brother. (Read Attention: Bloodshed In Aisle Six) However, I don’t have time to freak out. I’ve learned everything I can about this disorder, I’m keeping him as safe as I can, and I’m looking out for any of the signs the doctor told me warranted an emergency return visit to the ER. I have confidently given this disorder to the expert doctors at the children’s hospital. This is their business; they see it and treat it all the time. Nevertheless, if my gut tells me something different I will not hesitate to take action.

Quick Facts About ITP

• It can happen to anyone.
• Many children had an occurrence of a viral illness weeks before the onset of the disorder. (This is true in our case.)
• The US has approximately 200,000 reported cases of ITP.
• Children usually get an acute case between ages 2-4 that resolves itself in less than 6 months. Older children, more than 10 years-old, tend to get a chronic case lasting a few years.
• A child can look perfectly healthy or sick.
• Petechiae rash or strange bruising can be a symptom.

  Sources: Cincinnati Children’s Hospital Medical Center, familydoctor.org, Platelet Disorder Support Association, National Heart & Lung Blood Institute