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TOPIC: 12 month old ITP Journey

12 month old ITP Journey 3 weeks 6 days ago #66839

  • Hawaii808
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Hello everyone,
So during a 1 year routine blood work my 12 month old son had a platelet count of 15,000. We were admitted to the Hospital for monitoring and blood test. He was diagnosed with ITP. He was placed on prednisolone. Some days his platelet count would go up to 150,000 taking 13mL of prednisolone then while trying to taper him off it would go down to 15,000 taking 5ml of prednisolone. Then about 3 weeks ago he got really sick with a fever of 104 with some vomiting and diarrhea. After about 3 days he was acting his normal self. Then last week we did his bi weekly CBC and his platelet count was 191,000 and at that time he was only taking 1ml of prednisone every other day since we are tapering him off and his last dosage will be in 3 days. The MD said that this is looking good and the ITP could have gone away. His next blood draw is in 3 weeks and we are hoping for the best. Does anyone have any insights?

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12 month old ITP Journey 3 weeks 6 days ago #66846

  • th8899
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It looks like your son doing very well. At his age, the majority of ITP is acute and will recover spontaneously within 6 months to a year and never come back again. (more than 90%) Most likely that will be the case for your son. Good luck.
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12 month old ITP Journey 3 weeks 1 day ago #66889

  • Hawaii808
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Update:

So my sons last dosage of prednisolone was June 22 and now he has some Petechiae where he scratches no signs of bruising. I have the feeling the ITP is still lingering around. His next blood work not till next Thursday. So frustrating because his platelet count was 191,000 on the lowest amount of predisolone. I just hope this is not chronic. :(

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12 month old ITP Journey 2 weeks 4 days ago #66907

  • maria3132
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Hi Hawaii808,
My son also had petechiae where he scratched himself during his recovery. It took another couple of months after that "stage" until his counts started steadily climbing without meds. We only did IVIg but it took 4 treatments weeks apart to stabilize him until his body took over. He has been at normal levels since February, with one suspected dip earlier this spring (he seemed to recover from that one very quickly). You can see his ups and downs on the chart I posted in my thread: pdsa.org/discussion-group/12-newly-diagnosed/30129-petechiae-but-no-bruising-in-3-year-old.html?start=60

During some of the tougher days (while my son ws hospitalized, etc.) I found it helpful to focus on things that were going well and the fact my son was still having fun or thriving in other respects. (I have a video of him dancing and singing around his hospital room that still warms my heart whenever i see it.)

The paths to recovery are many... I hope you will see a resolution soon, but please know that even if symptoms persist for a year, it's not necessarily a chronic case, especially for young kids. At least you know he responds to low doses of prednisone.

Wishing your son lots of platelets and you some respite from worrying!

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12 month old ITP Journey 1 week 6 days ago #66942

  • th8899
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Hawaii808,
Same here for my son. He stopped all med (25 mg Promacta) over a month ago. His count was 192K. Within a week, he starts to have petechiae every where he scratched, but no bruise and blood blisters in the mouth. We thought his count was in teens. However, we had a CBC last week, his count is 70K. Our hemo said he observed this behavior in kids with compensated ITP (he means counts are not in either normal or dangerous range. Basically you still have ITP but becomes less severe), platelet does not work as efficient as normal. Hopefully we could follow same path as Maria’s kids and start climbing up by itself without any med. Good luck and happy Independence Day.

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