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Newly diagnosed with chronic ITP 9 years 8 months ago #31541

  • locksley
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My son (8yr) has just had his 3rd episode of ITP so they are now classifying it as chronic. He was hospitalized in Feb 2009 when he was 4 for his first instance of it with a platelet count of 3 at it's lowest. He had 2 rounds of IVIG which didn't work and then started oral steroids. During that round he had extreme nose bleeds, vomiting of blood, petechiae, pupura etc. The oral steroids brought his levels up and after almost 12 weeks of it he was able to keep his levels up without the steroids. We were told he would never have to deal with it again.

In Feb of 2010 when he was 5 I noticed petechiae again and his platelet count was a 12. Since it was above 10 we decided to not treat and his levels came back over a 3 month period on their own. We thought maybe this was a continuation of the first time or just a fluke experience. Was not told he was chronic.

Now 3 years later he had petechiae again and his platelet count was down to 1. We were hospitalized this past weekend and did 1 round of IVIG (this time had headache and vomiting from it). We left the hospital Sunday and his count was 5. Monday it was up to 10. He hasn't had any bleeding until this morning a nose bleed and new petechiae.

So my questions - if your child was diagnosed with chronic -- how often are your episodes? Now that he is older will it be more likely to return more often? For all I know his levels may have dropped over the past 3 years but never got low enough for petechiae to form. (I am always on the lookout for petechiae). If they have chronic ITP as a child will they continue to have ITP as an adult or at some point will it just go away?

Does anyone know at what platelet count petechiae are more likely to form? Less than 20?

He is a very active child, lots of sports, has 2 brothers that he wrestles with, etc... so minimizing his activity and injury seem difficult but from reading discussions here it looks like I only need to be really concerned when he is less than 10? At what point do you feel comfortable letting them return to school, sports, PE, recess etc? I know what the doctor says but what level are you as a parent comfortable with?

I know I have more questions but that is all I can think of at the moment. I am just frustrated because we thought this was an isolated incident when he was 4 and now it appears if it's not.

Also anyone have any coincidental timeframes or things they have seen to cause it? My son every single time has had it the same time of year. early Feb 2009, mid Feb 2010, this time mid March 2013. Seems a bit odd to me - makes me think it could be something he is exposed to this time of year or a viral infection that he may be exposed to this time of year. He hasn't been sick since January when he had a cold.

thank you for your time in answering....the biggest annoyance with ITP is the lack of answers and the uncertainty. It's just so frustrating to not have answers and I know none of you can give them but I would just like to hear other parents perspective.

Thank you!


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Newly diagnosed with chronic ITP 9 years 8 months ago #31543

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I know it's hard to not have answers but as you said, there just aren't any. Accepting that is part of the hurdle. The body is a complex thing and no one ever really knows why it does what it does.

As for the word 'chronic'...don't get too hung up on that word. All it means is that he's had ITP for longer than 6 months. It does not mean that it will never go away or that it will last a lifetime. Your son has had some great remissions which means he's doing better than a lot of ITP patients. Focus on that. Even a person labeled 'acute' can have a relapse, as you found out. It may go away for 30 years and then return again, it's impossible to predict what will happen.

Anything can knock a person out of remission. A cold, an antibiotic, an herbal supplement, never know.

There is no magic count with petechiae. Some people get them at 30k and some don't show any until 3k. Every person is different based on what their body can handle. People with ITP tend to have larger than normal platelets (new, reticulated platelets) that provide some protection against bleeding. Also, people with ITP tend to have platelet microparticles (tiny platelet fragments) that also help with clotting. These are different for everyone, so the symptoms are also different.

Every time you think you have it figured out, things change. Antibodies come and go, and you can't control it.

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