newbie mom

ITP, the (seemingly) never ending story

June 2, 2015

It all began on February 15th when a strange rash appeared on V’s face and was kicked-up a notch with V’s admittance to Children’s Hospital for treatment for ITP on February 23rd.

NOTE: Petechiae has a very specific look – see a few pictures of V’s cheeks above for reference. It looks like tiny pin pricks and is not raised. It’s one of those things they say ‘you’ll know it when you see it’ and it’s true. It’s very distinct.

Since being released from Children’s Hospital on 2/24 we began a regimen of weekly blood draws at our local Cleveland Clinic lab. V was a champ. He was a ham in the waiting room, flirting with the ladies. He did really well even though most of the time it was not easy to draw his blood and he was poked and prodded a bit. (Also have you ever met a kid that hated band-aids? It’s this guy. NOT A FAN. All I hear/read about is kids asking for cool looking band-aids even though they don’t have a boo-boo or they have a microscopic scrape. This guy – not so much.)

Each week, in the beginning, we saw a decline in V’s platelets. The declines prompted the request for a quicker turnaround visit in March only leaving half a week rather than a full between lab visits. Then we had an inconclusive test. It was slow torture. The decline was constantly in the back of our minds each week as we waiting until the next draw. The waiting game and the unknown was the worst of it for sure. Here’s how it played out in his platelet count (normal levels are between 150-450,000)…

  • 2/17 Count at 25,000
  • 2/23 Count at 7,000
  • 2/24 Count at 31,000
    • V was released form Children’s Hospital
  • 2/26 Count at 160,000
  • 3/13 Count at 116,000
  • 3/26 Count at 46,000
    • Glass half empty – Another test ordered for Monday
  • 3/30 Count at 60,000
    • Glass half full – Though it was still lower than we wanted, his count had rebounded
  • 4/6 Inconclusive test
    • Glass half full – Even though the test was inconclusive, the doctor felt we could wait until our next weekly draw rather than redoing the test
  • 4/14 Count at 196,000
    • We could skip a week and get checked after our mini vacation to Florida
  • 5/1 Count at 101,000
    • No need to get blood drawn again, schedule appointment with hematologist to HOPEFULLY have one final check and be cleared

Today was, I’m happy to report, our final visit! His count came back at 287,000. V has been cleared by the hematologist. We no longer have to visit the lab for blood draws and can consider his ITP resolved however we should keep an eye out for atypical bruising and petechiae – both signs of ITP. For most kids it’s a one-and-done thing with treatment. We’re hoping this is the case for us. For now we feel fortunate that this can categorized as a blip on the radar of an otherwise perfectly healthy toddler.

– JLVR

More about our visit to Children’s and some of our learnings.

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