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TOPIC: advice for parent of 14 month old

advice for parent of 14 month old 2 years 1 month ago #64320

  • Jill0626
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Hello, we've been dealing with ITP for one month after my one year old received the MMR vaccine. Bruises, petechia and blood blisters in his mouth seemed to come of nowhere and he was hospitalized with a count of 2. They tried IVIG (2 rounds, didn't work, high was 9, then back to 2). And now he's on Prednisone (not working yet, last count was 5, we're only getting the side effects). He has another test in a week. Given this situation, do you think we should continue to follow the doctor's approach to try different medications (which may or may not work) or at what point do we just switch to watchful waiting? This is new to our family so we are doing the best we can and trying to make good decisions about what to do.

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advice for parent of 14 month old 2 years 1 month ago #64325

  • 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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That is a tough decision and one that only you can make. How are his symptoms with low counts? How active is he? How comfortable are you with it?

The only thing you can really do is arm yourself with knowledge and make the best decisions that you can. Determine benefit vs risk with each proposed treatment and go with your gut. Many parents choose to watch and wait, especially if treatments are not raising counts at all, so it is a viable option if you are comfortable with it.

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advice for parent of 14 month old 2 years 1 month ago #64329

  • Jill0626
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Thanks for your message Sandi. Right now is only symptom is more bruising than usual which is not bad at all. You wouldn't know that anything was out of the ordinary. But he can't go back to daycare or his normal routine until his counts improve (we don't even take him in the car because what if he was in an accident?). He is very active and we're shadowing him all day so he doesn't fall or bump. It's a lot. I wish we could find something that works but the side effects for some of the other treatment options are scary and there's no guarantee. We'll talk to the doctor again and keep doing our research. Thank you.

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advice for parent of 14 month old 2 years 1 month ago #64333

  • maria3132
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Jill, welcome, I am sorry to hear your son is dealing with this and at such a young age. Since his number is so low right now, i.e. personally, I would continue to try different meds to see if something works.

However, the official guidance in many countries is not to treat the numbers but only symptoms.

If you are confident he doesn't have any wet purpura (gums or nose bleeds, or blood blisters / petechiae in the mouth), and is only having slight bruising and petechiae, it is completely reasonable to just watch and wait.

I have a 3 year old diagnosed 6 weeks ago, and he has had four rounds of IVIG but has dropped after each within 1-3 weeks. My thread is here: https://pdsa.org/discussion-group/6-general-itp-discussion/30129-petechiae-but-no-bruising-in-3-year-old.html

We are not taking him in for counts unless we see widespread petechiae or wet purpura, at which point we get a count done and have decided to treat at 10 or below. However, we know he does respond to IVIG and are reasonably confident it will work as a rescue treatment if needed which makes me (relatively) comfortable with the watch and wait approach.

Please keep us posted, and I'll keep my fingers crossed for your little guy to respond to the prednisone.

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advice for parent of 14 month old 2 years 1 month ago #64348

  • Jill0626
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Thanks for responding Maria. Seems like we are on a similar roller coaster with ITP. How is your son doing after the IVIG? My little guy looks good (only a few bruises) so we are hoping for a good result next Monday.

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advice for parent of 14 month old 2 years 1 month ago #64352

  • maria3132
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Hi Jill, it does sound like we are on a similar rollercoaster. My son is also ok today. We have a checkup next Wednesday, at which point we'll probably do a count (or perhaps not if he has no symptoms... one can hope).

I'm trying to be proactive and look into providers who are experienced with NPlate and Promacta for kids, in case that's a route we end up having to take... I don't know why, but I am not confident this will go away easily for my son, despite the great statistics for kids. Mother intuition, perhaps (and it could very well be wrong-fingers crossed!).

Keep us posted. :)

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advice for parent of 14 month old 2 years 4 weeks ago #64512

  • maria3132
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Jill, how did it go this past week?

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advice for parent of 14 month old 1 year 11 months ago #65027

  • th8899
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Jill, just saw this thread. My 11 years old son also diagnosed with ITP 3 weeks ago. First round of IVIG had no effect. His count went up from 2K to 23K after 1 day, then by day 3, it went back to 6K. Then we tried 5 days of Prednisone, which has zero effect as well. However, our second round of IVIG along with Prednisone brought his count up to 151K in 2 days and it lasts about 10 days afterward. Even our doctor does not know why this happens.
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advice for parent of 14 month old 1 year 11 months ago #65035

  • Hal9000
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th8899, let me double check my understanding.
IVIG alone is useless. Pred alone is useless. But IVIG and Pred leads to 151 count and lasts ~10 days? Yes? This could help explain some past row 2 responses where some sort of steroid response seemed to come and go at will. It is also consistent with the observation that a bit of steroids with Promacta/Nplate, for row 2, leads to a speedier recovery.

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advice for parent of 14 month old 1 year 11 months ago #65036

  • th8899
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Hal, you are correct. IVIG along is useless. Then Prednisone along for 5 days also useless. On day 5th of Prednisone, our hemo did another round of IVIG (single dose 1g per kg). Within 16 hours count up to 59K and my hemo also stopped Prednisone at the same time without a taper. Then 151K 2 days later at follow up appointment. However, it only last for 10 days and his count is back to 2K. We are in the hospital right now for another round of IVIG along with 100mg per day Prednisone. This time our hemo will let us be on Prednisone for a little longer with a tapering plan. Finger crossed. But my son's case maybe little complicated than others. Since he also found Lyme infection at the same time. He is on 200mg per day Doxycycline right now. Not sure if Doxycycline or Lyme is playing any role here for his count crash.
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