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Parents of Children with ITP
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11 Years Old Son Just Diagnosed with ITP

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11 Years Old Son Just Diagnosed with ITP 3 years 8 months ago #66700

  • MelA
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When in doubt, check it out.
If you are concerned get a CBC to check platelet count. It could be down but not badly, could be stable - but if you are concerned get it checked.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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11 Years Old Son Just Diagnosed with ITP 3 years 7 months ago #66850

  • th8899
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Here is a quick updates. My son has been off all meds for 4 weeks. He doesn't have any bruise, petechiae or blisters. However, every scratch on his skin will result in a scratch mark and some petechiae. We are back to hemo office this morning and count was 70K. I felt ok with this count. However, our hemo definitely does not satisfied with this number. Since we will go oversea for a month, he wants us to put my son back on 25 mg Promacta until we come back from our trip at the middle of August. He told us he is aware that Promacta is only target at 50K. But he is not comfortable to let us travel oversea for over a month with 70K. My wife wants me to listen to our hemo and just be safe than sorry. Ok, we are back on Promacta tonight and stay the course until we come back. Wish everyone a good summer!

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11 Years Old Son Just Diagnosed with ITP 3 years 7 months ago #66851

  • Hal9000
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That is a fantastic count with no meds th8899.
Sounds like you've got some time to see if counts go too high before leaving on the trip?

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11 Years Old Son Just Diagnosed with ITP 3 years 7 months ago #66852

  • th8899
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Actually I am totally fine with this number for travel. But both my wife and hemo want to be extra safe :-). We are leaving at late July and just set up an appointment 2 days before our departure to confirm the count. Hopefully we are on the path to remission.

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11 Years Old Son Just Diagnosed with ITP 3 years 7 months ago #66854

  • MelA
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Where are you going overseas?
I'm an adult, however I moved to Tokyo shortly after diagnosis and on 60mg of prednisone, from there we moved to Hong Kong - we traveled to Egypt, Thailand, Mainland China, Singapore, the UK and more - all on dear old prednisone. But like I said, I'm an a adult.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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11 Years Old Son Just Diagnosed with ITP 3 years 7 months ago #66855

  • th8899
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We are going to Taiwan and possibly will visit Korean as well. I am perfectly fine to travel with a 70K count. He had no symptoms other than a few scratch marks. Once we are back, I will definitely ask hemo to put him off med again. Maybe a little bit slower weaning this time.

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11 Years Old Son Just Diagnosed with ITP 3 years 7 months ago #66868

  • MelA
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We are all different - I was more uncomfortable when my hematologist in Hong Kong would want my spleen removed when my count dropped than I was with traveling to unknown locations & not knowing what my count was. However we did not allow our son to receive a gamma globulin injection before a school trip to India since it was gamma globulin that triggered my ITP.

Good luck, hope your son's count stays up!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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11 Years Old Son Just Diagnosed with ITP 3 years 7 months ago #66901

  • maria3132
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th8899, fingers crossed that the counts are staying up. i would also be completely fine traveling at 70K, and would just research clinics/medical care in case you need it in Taiwan and Korea. Worst case scenario, you'd give some prednisone (i can't remember if your son responded to it previously) or IVIG (if available?) and get on the next flight home...

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11 Years Old Son Just Diagnosed with ITP 3 years 7 months ago #66943

  • th8899
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Maria, MelA, and Hal, thanks for all the advises. Since scratch results in petechiae, our hemo think my son’s platelet is not working as efficient as normal. He said it is common among the kid’s with ITP which is improved by still not in normal range. So for safety, we are back on Promacta 25 mg two weeks ago and will check count 2 days before our trip. This time Promacta works quickly, just after a week, his symptoms were mostly gone. Now I am thinking that since his immune system seems calm down a bit, his resistance on treatment maybe much lower now. Anyway, at least it is going towards a right direction right now. Happy Independence Day every one. Going to watch some firework now.

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11 Years Old Son Just Diagnosed with ITP 3 years 7 months ago #66948

  • maria3132
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That's a relief to have such a quick and good response! Hope you enjoyed the fireworks!

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11 Years Old Son Just Diagnosed with ITP 3 years 3 months ago #67681

  • th8899
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It has been a while since my last update. My son is still on 25 mg Promacta every other day. We were back at his hema's office last Friday and his count was up to 139K. He does not have any ITP symptoms for the last two months. Since we were hitting a year mark at the end of Sept, my son is officially diagnosed as a chronic ITP. But with what we had been through last year, we feel grateful and life is almost back to normal. Hemo wants us to stop Promacta once soccer season ended and see him back 3 weeks after we stopped all med. Hopefully, we could have better news by then.
The following user(s) said Thank You: maria3132

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11 Years Old Son Just Diagnosed with ITP 3 years 3 months ago #67705

  • Hal9000
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th8899, 25mg every other day with a 139 count is very good. Do be aware though. There can be more variability in the count check when skipping days. For example. If one skips the night before a count check, next morning that will be a higher count. If one doesn't skip the night before a count check, next morning that will be a lower count. That is, depending on the day skipped, count can be slightly higher or lower than true average value.

Regardless. 139 is a very strong response to 12.5mg average dose.

I see you are very anxious for no drugs, LOL. Me too !

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11 Years Old Son Just Diagnosed with ITP 3 years 3 months ago #67714

  • maria3132
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th8899, glad to hear his platelets are in the 130s, thanks for the update! Fingers crossed the levels stay up even after you taper off the meds.

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11 Years Old Son Just Diagnosed with ITP 3 years 3 months ago #67718

  • th8899
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Hal, I actually thought about the same thing. The night before the count was the day no Promacta. So theoretically this should be the lower count :-) Hopefully your theory is correct. Also, I purposely do not follow the food restriction anymore for the last two months. You are right, I cannot wait to let my child off the med. The bone marrow stimulator sounds really horrible to me. Who knows what the long term side effects are.
Maria, thanks for your words. How are your kids doing? This allergy season in the Washington DC area was really bad. My son had to take both Singulair and Zyrtec entire season.

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11 Years Old Son Just Diagnosed with ITP 3 years 3 months ago #67731

  • maria3132
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Both kids are doing well, thanks so much! I'd forgotten we were neighbors (I'm in the District) -- and yes, I think the allergy season here just goes from "bad" to "very bad" depending on the time of year.

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