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TOPIC: Daughter with ITP 10 weeks....need advice

Daughter with ITP 10 weeks....need advice 6 years 4 months ago #41929

  • Tcammauf
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I have not posted before. My 11 year old was diagnosed 10 weeks ago. She had a count if 2,000 and received IVIG. It boosted her count to 165,000 but it lasted less than a week. She went back down to 2,000 so she received another round of IVIG. This time within 5 days she was back to 14,000. Back down to 2,000 within a few days. She used dexamethasone which brought her count to 54,000c within a week she went back down into the teens. They tried her on one week of 60 mg of prednisone. This boosted her count to 74,000. Again, within a week back to the teens. Now she has been on 40mg of prednisone for 2 weeks and three days. First week her count was 65,000. Second week down to 19,000 and within three days.....now at 10,000. The doctor says to keep her on 40mg for another week and see what her count is then. If she goes back down to 2,000 (like in the past) they want to try IVIG again. She has blood blisters in her mouth, petechiae and bruises but nose bleeds. It seems like a high dose of prednisone for an 85 lb girl to stay on. Should I fret a second opinion? Should we be checking into other treatments? Any suggestions?

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Daughter with ITP 10 weeks....need advice 6 years 4 months ago #41932

  • 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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It never hurts to get a second opinion, but it seems as if her doctor is trying all of the typical first line treatments. IVIG is usually always temporary, and it is common to have counts jump up and fall again quickly with Dex. A longer course of Prednisone might keep her counts up longer; it can induce remission sometimes if a person is responsive to it.

The second line treatments are harsher and you may have to move on to those eventually. Treating ITP takes time and patience; there is no magic fix. Sometimes the treatments are worse than the disorder itself.
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Daughter with ITP 10 weeks....need advice 6 years 4 months ago #41935

  • Tcammauf
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Sandi: Our doctors act as though this is definitely an acute case but I read that older kids (over 6) at diagnosis are more likely to be chronic? Do you know if that's true? It's hard because I don't really like her being on steroids at this age but I don't want to push for longer, stronger meds if this will end soon.

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Daughter with ITP 10 weeks....need advice 6 years 4 months ago #41936

  • 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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It could be acute but there is no way to tell. People of all ages can have acute ITP. The only difference between chronic and acute is that chronic lasts longer than a year. It does not mean that it will last for a life time.

Why do her doctors think it will be acute? Steroids can have nasty side effects, but the treatments that come after it can be worse as far as toxicity. In order to ride it out to see which way it goes, all you really need to do is get her to maintain a safe count of around 20k. You don't have to strive for normal counts, although that can be nice too!
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