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TOPIC: 3 Year old newly diagnosed now on prednisone

3 Year old newly diagnosed now on prednisone 6 years 10 months ago #38555

  • EvelynMom
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Hello

Last Wed I took my daughter to the dr because of excessive bruising and blood in her bed (from drool). Her platelets were 1,000 at the Dr office. They send us to the Children's Hospital in Birmingham and we were admitted as a hematology patient. They gave her IVIG and her platelets were 14,000 the next day, YAY! However, they wanted to do another round. The second round of IVIG was horrid, she puked about 8 times, spiked a fever and became unresponsive (they thought she had developed aseptic meningitis). The good news was that her platelets were 53,000 the next day and she was feeling much better, so they let us go. This was on Friday.

Tuesday we went to the Dr and I fully expected her platelets to continue to rise, if not stay the same. However, they came back and told us they were 2,000. This time the hematologist wanted to do a bone marrow biopsy to make sure they weren't missing anything. We went to the Children's hospital the next day to do the BMA and biopsy. I was obviously terrified, luckily the preliminary results have come back negative; we have to wait another 72 hours for the full results.

They sent us home on prednisone. I know I shouldn't care, but the side effect are freakign me out. She does have nose bleeds, and peteechia (sp?) and i just noticed some bleeding in her mouth today. This feels as if it is spiraling out of control. They want to check her platelets tomorrow (Friday) and then again at the Children's Hospital hematology clinic on Tuesday. Is she going to get a "puffy face" (why do i care if she gets a puffy face?) Is she going to get a big belly? Is she going to be moody? Is this the right treatment for her? Why can't we try a third round of IVIG, only if they slow the infusion way down? All these quesions are floating in my head...just reaching out and hoping this is all over quikly. My sweet girl is not the same and i want her back.


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3 Year old newly diagnosed now on prednisone 6 years 10 months ago #38563

  • 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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Hi - sorry to hear about your daughter. First word of advice....breathe. It's going to be okay.

IVIG is usually a pretty temporary treatment. It's a rescue treatment, meaning that it can work to get counts up quickly, but it usually doesn't last. It's a heck of a lot to go through for such a short response. That is probably why they don't want to keep using it.

Prednisone can cause remissions and can also work quickly if someone is responsive. You're right though, the side effects can be nasty. The moon face and weight gain was the least of it for me. Steroids can cause moodiness, insomnia, hunger, among other things. Your daughter may not have these side effects, but it all depends on the dose and how long she is on it. A low dose might not cause any side effects at all.

From my end, I don't see anything spiraling out of control. I'm sure it feels that way to you though. Her doctors are doing the typical things, although the bone marrow biopsy might have been a bit premature. It's usually not necessary when diagnosing ITP if platelets are the only abnormal cell on the CBC. Other than having to go through the procedure though, it didn't hurt anything.

The good news is that in children, ITP is acute most of the time and can go away within weeks to months. Did your daughter happen to have any immunizations lately? Has she been sick at all?

Very pretty little girl!

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3 Year old newly diagnosed now on prednisone 6 years 10 months ago #38564

  • EvelynMom
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She did have a GI problem for about a month. As of right now, the steroids are just making her incredibly hyper...the only problem with this is me trying to get her not to hurt herself and let her be "normal" at the same time. Quite the challenge, as you can imagine.

Thanks for the reassurance...this has been daunting!

Hopefully there is some improvement in her blood work tomorrow!

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3 Year old newly diagnosed now on prednisone 6 years 10 months ago #38570

  • 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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What dose is she on? Yes, hyper is one of the side effects.

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3 Year old newly diagnosed now on prednisone 6 years 10 months ago #38572

  • EvelynMom
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4 ml 2X day

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3 Year old newly diagnosed now on prednisone 6 years 10 months ago #38577

  • crystal lee
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Hello
Beautiful little girl!! I know how you feel. I do want you to know that it is going to be OKAY! Kids do normally get better, even without treatment. My son is also 3, and he had counts this low. Feel free to ask questions, vent whatever you need..

Praying you get relief soon, I know how hard this is with little ones!
The following user(s) said Thank You: EvelynMom

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3 Year old newly diagnosed now on prednisone 6 years 10 months ago #38579

  • EvelynMom
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Just had her platelets checked today...they were ZERO...she has none. What the heck?!

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3 Year old newly diagnosed now on prednisone 6 years 10 months ago #38581

  • crystal lee
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:( Is she on the prednisone still? Did they suggest treatment or are you waiting and watching? I really do know how you feel! I am not going to share my story with you yet, but I really know how you feel! My son was refactory to all the treatments, today he is doing well, on his own!!

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3 Year old newly diagnosed now on prednisone 6 years 10 months ago #38583

  • 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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People have had counts as low as zero at times. It happens. How many days has she been on Prednisone?

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