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son with itp

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Old 05-02-2010, 11:01 AM   #1
Join Date: May 2010
Posts: 1
knelsonnicholas HB User
son with itp

my son was first diagnosed with itp a year and a half ago. he will be five years old at the end of this month. when he was first diagnosed his platelet count was 7,000. he had an ivig treatment and his count quickly rose and stayed well into normal levels for eighteen months. five weeks ago his count went back down to 14,000, he had another ivig treatment. this time he had a reaction to the ivig and got aseptic memingitis. his count began to rise slowly this time. i saw patecheia today and had his count checked again this morning. it was back down to 18,000. his doctor reccomended to watch him over night and to have it checked again tomorrow morning. he has been diagnosed with chronic itp now. i am wondering if anyone has tried any other treatments besides the ivig and how they have worked for you. i am stressed and constantly worrying about my son, any info would be great.

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Old 05-03-2010, 05:09 AM   #2
Join Date: Mar 2009
Location: Bakersfield, CA, USA
Posts: 98
kelli1b HB Userkelli1b HB User
Re: son with itp

I had ITP in 2000 and was initially treated with steroids. First, IV Solumedrol (not sure of the spelling) then the pills. Was on them for 4 months. Long time. The high doses of steroids really REALLY stink, bad bad side effects. Every time they tried to reduce the amount, my plateletts would drop. So I had my spleen removed and that did the trick. Easiest surgery I've every had, all done electroscopically :-) There is an IVIG that most kids use that is supposed to be well tolerated, Gamunex or Gammaguard? Not sure which one sorry. If they ran it too quickly people can get side effects as well. I cant go over 100 ml/hr on my IVIG. Good luck.

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