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ITP During Global Pandemic 1 year 6 months ago #68987

  • BabyG
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  • I am the mother of a one year old, happy boy whose ITP is officially in remission. He was diagnosed at 10 months with a count of 2. Today he is around 360. I am grateful for this group and the comfort of knowing we were not alone on this rollercoaster
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Hello- I'm a new ITP mom. My son (now one year old) was diagnosed with ITP 3/4/20 with a platelet count of 2 following a spell with Hand, Foot, and Mouth that we mistakingly thought was just getting worse before it got better. Then we learned about wet purpura and what was really going on in addition to his HFM. After IVIG his platelets got up to 106. Then he got an upper respiratory infection and they fell to 13 on 3/16/20. This was the day Ohio schools shut down due to the coronavirus pandemic. We have been home together for 44 days, 24 hours a day and oh what an emotional rollercoaster it's been! I'm given the option to go back to work in our office next week, either during regular business hours or in evenings alone or just work from home. I'm terrified to leave him, but really torn at how I can continue to function. Any other ITP parents out there *slightly* freaking out during all this coronavirus scare? Working parent suggestions to keep the germs away and the platelets up? He would go to family who have also stayed home for the majority of the last month.

Thanks for these discussion group posts! After 8 weeks, I finally googled ITP support and it led me here. The advice for newly diagnosed was so helpful and reassuring. I know I'll have more questions to post. I had a running list of 57 for the hematologist after discharged from the hospital! But this pandemic + ITP topic is the life-threatening one that keeps me up at night.

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ITP During Global Pandemic 1 year 6 months ago #69019

  • gpT2
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Baby G,
Have you watched the Town Hall Meeting that PDSA hosted? It might be helpful to you. It is found on the home page, via the Covid 19 link.

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ITP During Global Pandemic 1 year 6 months ago #69105

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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BabyG, I did some searching on this forum for others with hand-foot-mouth associated ITP. I could only find two folks.
User 'Taz':
pdsa.org/discussion-group/search.html?searchuser=taz&exactname=1&searchdate=all&order=inc&childforums=1&limit=30&start=0

And user 'Calouk' (daughter):
pdsa.org/discussion-group/search.html?searchuser=calouk&exactname=1&searchdate=all&order=inc&childforums=1&limit=10&start=0

Both of these cases look like they were temporary/acute. I think I would ask your Hema if they have ever treated hand-mouth-foot triggered ITP. And if so, did the ITP resolve itself over a few months.

Taz's comments were interesting. Sounded like she had ITP bleeding symptoms with counts below 50 - which is a pretty high number to have bleeding. I skimmed through, but I don't think she ever had any ITP treatments.

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