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ITP

Updated on July 1, 2012

These red dots are called petechiae

One evening in 1995 after supper my wife commented to me that my son Alex had gotten out of bed that morning with some bruises on his legs and maybe a couple on his torso as well. He also had some scratches on his legs. My son was 1 and a half at the time and we decided this was the result of his kicking at the cat, since him and the cat tended to fight over who would sleep in his bed. We resolved to keep an eye on it but did not worry about it. The next morning before I left she said the bruises were still there and there also was a small amount of blood on his sheets. I asked if he had been fighting with the cat again and she said she did not know. I went to work but still was not worried. Alex was extremely active and prone to running into things at full speed as well as getting into things.

About 1 o’clock that day, my wife called and said Alex was acting very sluggish and what’s more he had bruises on the roof of his mouth. I thought maybe this was a bit of over reacting but told her to call the doctor and I would be home in a minute. When I arrived she had a bit of panic in her eyes. We typically went to a clinic for our ailments and so had no regular GP. She had called a Pediatrician’s office at random and after describing the symptoms to the nurse was told to get Alex there right now.

We dropped our other 2 children off at some friends and were at the office in less than 20 minutes. The nurse ushered us into the treatment area immediately and the doctor was waiting. I was becoming increasingly alarmed, not only at their behavior but at my son’s rapidly increasing sluggishness. He just lay in my arms as though he were exhausted.

The Doctor did a cursory examination and said,”I’ve seen this before.” When I asked what it was he told me it was ITP. He said to get Alex to the hospital ICU immediately and he would meet me there. I asked if Alex was going to be alright and he said, “I hope so.” That galvanized me and I was at the NICU in 5 minutes.

We were met there by a team of nurses and doctors and then my doctor arrived. He explained that ITP was Idiopathic thrombocytopenic purpura, a rare blood disorder. They did not understand it (hence the name idiopathic) but believed it began when the body contracted a virus such as the flu. This almost always happens in children less than two years of age. When the virus runs its course, the immune system fails to shut off and begins to attack the White platelets in the bloodstream (Thrombocytopenia). This is what causes the bruises (purpura) and they don’t heal. In fact, the slightest bump can cause a bruise on someone affected by ITP. The only known treatments in those days were the transfer through IV of gamma globulin. This would only require an overnight stay with the transfer of one bag of globulin. The trick was getting the needle into my son’s rapidly collapsing veins. It took a team of 4 nurses and 20 minutes to find a vein in the arms or legs of my screaming boy. It was ripping my heart out to be able to do nothing. They finally succeeded. I stayed the night with my son on a cot in his room and saw the transformation within a few hours. He perked up, ate and watched TV with me. We even had Ice cream.

The second part of the treatment meant the oral administration of steroids. For the next 2 weeks we gave him steroid pills to bolster his platelet count. The typical platelet count in a human body is between 3 and 400,000. At the time Alex reached the NICU his was 14,000. During this time we had to watch him for blows to the head. This was the most dangerous aspect. I was tempted to put a football helmet on him. We returned to the doctor’s office to the good news that his platelet count was between 5 and 600,000 and he could come off of the steroids.


We were very lucky. First, our doctor happened to be a specialist in Hemo-Pediatrics for St. Jude’s Hospital. He recognized this as soon as he saw it. He told me he was very glad at how fast we were to get our son to him. He said many parents are afraid of being accused of child abuse when they see this and so delay treatment. He told me a story of a lady who was on her way to see him with her son when she stopped at a gas station. Someone had seen her boy while she was there and called the police. They detained her and he had to go down to the gas station to explain what was going on to the police. Even then he had to wait longer to treat the child while it was sorted out at the police station.

Second, in 1995 there was only this treatment and, if it had failed, a Spleenectomy. Most of the white blood cell damage occurs in the Spleen and so removal of it was the only other course. This would have meant a lifetime on immune suppressant drugs and everything that goes with that. In 1995 there was almost nothing on the internet about ITP (2 references) and so we were at the mercy of our Doctor. Had we drawn someone different that did not recognize this, our son could have easily died.

Third, our doctor told us that there was the possibility of relapse in the teenaged years. My son is now 18 and so far so good. Still, we pay attention as though it were yesterday that this happened. He is healthy, strong and in very good shape. Still, we have experienced the rapidity with which this disease can alter all that and so we keep an eye out.

Bruising of the legs is typically the first thing a parent notices

Today, there appears to be more treatments available. A quick look at the internet reveals a greater body of knowledge than 14 years ago. Still, they are no closer to understanding how this disease happens and why. There is no known record of this in either of our families yet my son contracted it. As it stands with the knowledge we have today anybody can contract this disease. There are a couple of new treatments today such as Anti-D and Steroid Sparing Agents along with a handful of experimental treatments that are rapidly showing promise. The key is to get treatment as soon as possible. If you have a toddler and he or she begins to exhibit the signs of easy bruising and sluggishness, drop what you’re doing and seek treatment now. They can’t tell you something is wrong. You have to be pro active here. If it’s nothing, great. If it’s ITP, you’ll have a better chance of seeing it cured.

Dr. Carola Arndt of the Mayo Clinic explains ITP (courtesy of Mayo Clinic)

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    • profile image

      iheartwho314 

      5 years ago

      I'm 15 and was diagnosed last year and have had tons of health problems after being diagnosed.... My platelets are usually about 10,000 to 20,000... even with IVIG they only rise up to about 45,000..... I've had a bone marrow biopsy and have had lower back electrical shock like pain in it directly over where they did the biopsy.. does anyone else have this?

    • profile image

      skperdon 

      5 years ago

      Thanks for sharing your experience with us. My ITP was diagnosed in 1999, I didn't know about the disease either.

    • John Z profile imageAUTHOR

      John Z 

      6 years ago from Midwest

      Thanks to you all for your comments. I wrote this article because we had no knowledge of such a disease. This fact nearly cost us our son. I hoped someone could use this article and your comments are appreciated.

    • teamrn profile image

      teamrn 

      7 years ago from Chicago

      This topic caught my eye because my ITP was diagnosed the same year as your son's. My diagnosis was made when my platelet count dropped precipitously. I was fortunate that it 'came right back up.' However, I needed to have a bone marrow biopsy to rule out other problems. I've received no treatment other than periodic monitoring of all blood clotting. I've several clotting disorders.

    • RTalloni profile image

      RTalloni 

      7 years ago from the short journey

      Thanks for sharing your experience and what you learned from it! This could be lifesaving to someone.

    • spiderspun profile image

      spiderspun 

      8 years ago from Utopia, Ontario Canada

      I really didn't think I would find a Hub on this topic. You mostly hear about this condition only in children. I was diagnosed with ITP after some virus that dropped my platelets and WBC counts so low I was put in reverse isolation. My counts have been low ever since. Thank you for putting it out there

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