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TOPIC: 16-Month Old on Prednisone

16-Month Old on Prednisone 6 years 9 months ago #39177

  • IansMom
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My 16-month old son was recently diagnosed with ITP and after one round of IVIG, his levels went up to 220,000 and then slowly drifted back down to 16,000. The docs just started him on 20mg/day of prednisone and his behavior is freaking us out. He's wild as can be, seems jittery, skipped his nap, and was up from 3-5am. When he woke up he seemed disoriented for a good 10 minutes and after we gave him some milk he laid in our bed with us for two hours squirming around and rattling off all the words he knows in his limited vocabulary. We can deal with the wild and even the jitters, although it's awful to watch. Is the disoriented thing at night normal? Is there anything we can do to help alleviate some of this? Will the side effects get worse over the coming days or will he acclimate? We're so torn up seeing him behave so strangely.

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16-Month Old on Prednisone 6 years 9 months ago #39182

  • juliannesmom
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Is he being treated by a pediatric hematologist?
Norma

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16-Month Old on Prednisone 6 years 9 months ago #39187

  • 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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Prednisone can do that to an adult, so I'm sure it would affect a child like that too. I wouldn't say that I was disoriented, but I did get confused because my brain was going faster than my body and words. Insomnia is also part of it. The side effects will get better as the dose goes down. Is he getting Prednisone in the morning?

If you are really worried about it, call his doctor.
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16-Month Old on Prednisone 6 years 9 months ago #39188

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Thank you for the replies.

Yes, he's being treated by a pediatric hematologist at Children's of Alabama in Birmingham. He gets 10mg of prednisone in the morning and another dose of 10mg in the afternoon. Last night was better. He still woke up, but was not disoriented like the night before. He had some milk and after about an hour or so he was able to get back to sleep and slept until almost 6am. His morning dose didn't seem to light him up to the same degree as it did yesterday. He has big bruises on his arms and legs...any idea how quickly those may begin to clear up? Does Prednisone work quickly? I sure hope so, we are so distressed about his condition and are desperate to see consistent improvement. Really bothers us that he's so little and we can't communicate w/one another like an older child. Sigh. Keeping the faith, but this stuff sure is tough.

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16-Month Old on Prednisone 6 years 9 months ago #39189

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Prednisone can work quickly if a person is responsive to it. Some people are, and some are not. Bruises will fade as counts rise. Sometimes counts will stay up after Prednisone is tapered and sometimes they drop again. Only time will tell.

Have you read this article? It might help.

pdsa.org/forum-sp-534/12-newly-diagnosed/27819-new-guidelines-for-managing-itp-in-children.html
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16-Month Old on Prednisone 6 years 9 months ago #39201

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I'm not an ITPer but I have taken prednisone and decadron for short periods for other things. I talked too much, had too much energy (sometimes positive energy and wanted to clean, other times just nervous), and I was easily irritated. How much worse it must be for a baby, who can't have these feelings explained to him. I'm glad you are dealing with a pediatric hematologist. They are more familiar with ITP and its treatment. Make sure the doc knows the side effects your son is experiencing, so that can be considered when deciding future treatments. When your doctor lowers or tapers the dose (I assume it will be a taper like an adult - I could be wrong), be sure to follow it precisely, so that your son's body can properly adjust.
Norma
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