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Child ITP reoccured after self-cured 6 years 1 week ago #60890

  • jzhang3
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I am from China and my son was diagnosed with ITP in Nov 20th, 2015 when he was 10 months old (PLT count : 24). He was treated with steroids for four days and out of hospital with the number of PLT count 87. His number was up and down after that and the lowest was 24 again and gradually up, with the number 31, 50, 70, 89 ...
After around four months without any treatment, his PLT number is getting normal back to 263. After that, he got several times of flu, cold, fever, and the number was up and down, but the lowest is 170 which is still in the normal range. The most recent blood test was done on Jul 7th, 2017, and the number is 268.
Suddenly, this Aug 9th, after one year and a half of a normal PLT number, he caught a cold and with red dot on skin, and bruises appear as well, his blood test shows the PLT count drop down to 11. Other numbers like, RBC, HGB, WBC are all fine.
He is 2yrs and 8 months old now and active, playful. In general, normal like other kids except the red dots and bruises.
The questions is, when he was first diagnosed back in 2015, the doctor did not require to do the bone morrow test as the reaction of steroids is fine, so we did not do that until now. Is it necessary to do it now to distinguish with other blood disease? Given the fact that he is alright for one year and a half without any treatment. It's not common to have a hematologist here, so I'd like to gain any help here first.
Appreciated for any help first.

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Child ITP reoccured after self-cured 6 years 1 week ago #60897

  • 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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A bone marrow biopsy is not necessary for ITP even if it returns. That can be a common occurrence for children with ITP especially after they are sick. Did he have any vaccines prior to the low counts?

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Child ITP reoccured after self-cured 6 years 1 week ago #60900

  • jzhang3
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No, but he did get a flu prior to the reoccurrence. Thanks for your reply, Sandi.

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Child ITP reoccured after self-cured 6 years 1 week ago #60913

  • momto3boys
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I don't have much in the way of advice, other than to say if a bone marrow biopsy is not really necessary, I wouldn't do it in a child. I have had ITP all of my life, and they did a bone marrow biopsy when I was 9 years old. I STILL remember that experience and the feeling when they do the procedure. Not a good memory! *shudder*

This was many years ago (I'm now 42), but if you don't have to do it, it's a good thing to avoid. Children, especially one as young as yours, don't understand the necessity and that is a pretty painful test for a child. You probably already have enough painful experiences with the lab work involved in checking the counts.

Good luck, and I hope that his counts go back up to the higher numbers you had before getting the flu!

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Child ITP reoccured after self-cured 6 years 1 week ago #60914

  • EachDayaGift
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My Anna, adopted at age 2 was diagnosed with Aplastic Anemia in August. She is now 16.

The not so great news is that Anna childhood diagnosis of Idiopathic thrombocytopenic purpura (ITP) in 2005, then later polycytopenia may have been Aplastic Anemia all along. This means that her bone marrow is failing and is producing few white, red & platelet blood cells and many of those are faulty. Plus, her immune system is attacking blood cells when they are released from marrow. The cause is unknown. After the marrow biopsy, they are conducting genetic testing. So far those have come back negative, but 1 is still out for processing.

The transplant specialist, Dr. Mike Huang of Norton's Children Hospital in Louisville KY said that though her levels are low, Anna can continue to attend her full-time classes at college, work and dance. She cannot do activities where she might hit her head or ride roller coasters, etc. due to risk of head bleed. She is at high risk for infections, mold & such and contracted a cold between our office visits on Thursday & Tuesday.

He is taking a conservative approach as progression has been slow to this point. No transfusions or medication interventions until later if progression continues to be slow.

Finding a biological donor is almost zero if eventual bone marrow transplant is needed in future as Anna has no known close bio relatives. While Caucasians have an 88% chance of being matched to non-relatives through the bone marrow registry, Asians and African/Black, Hispanic and Native Americans are less than 50% due to fewer people in those populations registering to be donors. Anna would need an Asian donor. If that time comes, I will most likely take her to St. Jude's in Memphis for treatment.

We go back to UL/Norton (no longer Kosair's) in mid-October for bloodwork. It looks like we will be on the road every 6-8 weeks or so to monitor for any change.

So I am sharing all of this to say that I was "lulled" into complacency with ITP diagnosis. The bone marrow test was what was needed to give a definitive diagnosis. Each of us will have to follow their own journey with ITP and other blood disorders with children or self.
Eva, Adoptive Mom to 2 daughters born in Hunan China.

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Child ITP reoccured after self-cured 6 years 1 week ago #60917

  • Sandi
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I am so sorry to hear about the Aplastic Anemia diagnosis and it is a parent's greatest fear. I understand why you would want to be so careful with any diagnosis. Usually though, if a child does not present with any low counts other than platelets or any unusual physical symptoms, the diagnosis is presumed to be ITP. Your daughter's doctors probably didn't have any reason to suspect that anything else was going on and it's also possible that a bone marrow biopsy may not have shown anything at that time if it was in very early stages. Was there anything they would have done differently if you'd known at the age of 2?

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Child ITP reoccured after self-cured 6 years 1 week ago #60923

  • jzhang3
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Thanks all for your reply and suggestions. The blood test result only shows a low counts of platelet since 2015 for my son. His red cells is all right and white cells can be a little bit high when he caught a cold and get back to normal after the cold is gone. So far, I haven't seen unusual physical symptoms other than purpura (red dots and bruises), and those are not that much.
I will watch him carefully and take him to the hospital if any other unusual symptoms happened.
thanks you all again.

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