I’m new here. My 3 year old was diagnosed with acute ITP on Halloween last year, about 6 1/2 months ago. She was treated with IVIG shortly after diagnosis and her platelets went up in the 200s right after that, but then dropped again to 22 after the treatment wore off. From that point her platelet count was steadily improving on its own without any treatment, except for twice when she came down with a virus and it dropped down again. However, her levels always quickly rebounded and for the past 3 months her platelet counts have been in the normal range with no treatment. One count was 300, then 175, then 185. However, today, at our 6 month appointment her platelet count was 70. She does have a little cold or allergies right now. I’m not sure which but she is sneezing a lot. This is the first recorded drop in 3 months, however, reading the signs of her body I feel like she may have dropped other times within these 3 months, but we didn’t have bloodwork done to confirm.
Our doctors are saying this is still being diagnosed as acute ITP and it is promising that her body is going back into normal range on its own, but since we are getting closer and closer to the year mark without a true remission I am getting more worried that this is a chronic case. I’m wondering what others’ experience has been with their little one’s chronic ITP? Did they ever go up into normal range without treatment only to drop back down again? How often did this occur before being diagnosed as a chronic case?
I really appreciate your help and best of luck with your little ones!
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
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Hello. This might make you feel better. The only difference between acute and chronic is how long the person has had ITP. Acute is less than a year, chronic is longer than a year. In no way does 'chronic' mean life-long or forever. Children and adults can go into remission at any stage; two years, five years, ten years, whatever. We hear chronic and tend to think life-long battle. That just isn't true. Just because she hit that 12 month mark does not mean that ITP will not remit in month 13 or month 24. She seems to be doing quite well on her own, granted, she has ups and downs, but she is doing great rebounding on her own. That in itself is a good sign!
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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If she has a cold that may well account for the drop in her counts
Hello, my daughter was diagnosed in September and it is now April. Within that time frame we have had ivig 3 times with that said my daughter also keeps high numbers until she gets sick then they have dropped really low. Her 2nd ivig was nov 26 from then on until March 25 she had normal range except maybe once or twice and even then they weren’t terribly low 80’s I believe. Then the dreaded flu sent us to the er with 8,000.
My hopes are that their little bodies are resetting. I will pray for your little one as the thought of chronic terrifies me even though I know chronic only means over 12 months.
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