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TOPIC: Just diagnosed

Just diagnosed 9 years 4 months ago #2650

  • ianroom
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hello my name is ian, i am 15 and was diagnosed with itp last week. i went into the er due to the petichia and bruising and they did a blood test. count was 2000. ive been on prednisone 70mg for a week and i went in sunday for an ivig. now my count is 218000. my concern is will it stay like this or will it fall again. any feedback, stories, and support would be greatly appreciated.

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Re:Just diagnosed 9 years 4 months ago #3685

  • michellemcla
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Last year they had me do the IVIG treatment, and my platelets were in the 300 thousands for about a month and then they dropped back to nearly zero after that. It may be different for you.

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Re:Just diagnosed 9 years 4 months ago #3686

  • ianroom
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ya right now theyre in the 300s

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Re:Just diagnosed 9 years 3 months ago #3779

  • knair3
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I"m Kristy..I've had ITP for about a year now. I went through the IVIG and my platelets were at 158,000 before they fell to 97,000. It sucks going through this because I cant play the sports I lvoe because of risking the horrible "Head Injury". THe doctors make it sound so deadly to play sports because I could possibly die if I hit my head. Another thing that sucks is that I lost all my sports scholarships because of this :( Any other athletes going through this?

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Re:Just diagnosed 9 years 3 months ago #3872

  • Lisssssy
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Ahh i'm a teen in the UK and i've had ITP for about a year and a half, i was really into football before ITP came about. the risks stop me from doing basically all of the training and games are out of the question. i've had a variety of treatments IVIG, steriods, WinRo, and im now trying out eltrombopag, but as my count has been below 10 the last few months, its not going too good. but ahh well, keep battling on:)

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Re:Just diagnosed 8 years 10 months ago #8516

  • Shayna
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My name is Shayna, I am a 14yr old soccer player and horse rider. I was diagnosed about a month ago with my counts standing at 2,000. The doctor said that I wouldn't be able to play soccer or ride my horses until I reached 50,000. I went to Nashville to get a IVIG and my counts shot up to 108,000 in about four days. I got to ride my horses and got to play soccer again, but shortly after that I went back to get more blood drawn and my counts dropped to 48,000. The next week they dropped to 20,000 and I went this morning and they are now at 3,000. My doctor said I might have to get a bone biopsy and see if there is anything going wrong in my bone marrow. I have had a knee problem for about 3 years and it's getting worse now. My dad said it may having something to do with it but I'm praying it doesn't. I'm just glad that I have other teens that are in the same situation that I am. We just have to keep trudging on :blink:

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Re: Just diagnosed 8 years 10 months ago #8841

  • kari
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hey im kari, im 14 and i was diagnosed with itp about 2 weeks ago. i was pitching at softball practice and my hand swelled up which is normal for me when its hot, but once i looked at my hand i knew something was not right. i had petechiae all over my hand and going up my arm i showed my mom and she said if it didnt go away by the next day she was going to make me an appt. at the doctors. so the next morning i wake up and they are still there so i went to the doctor and she sent me in for a blood test and my platelets were at 5,000 and i was admitted to the hospital a few hours after. when i got to the hospital i was really scared because i had never been in the hospital before, but i ended up being fine. when i got the ivig the first time my platelets went up realllllly fast. they went from 5,000 to 118,000!! i stayed in the hospital over night and i got my second transfusion of the ivig the next day, once again my platelets rose alot they went up to two hundred somethin thousand. the second ivig gave me a really nasty migraine, they gave me Tylenol but that didnt help at all! so they gave me some morphine and i ended up being allergic to it and i threw up every 20 minutes for about an hour or 2 then they finally found some anti nausea stuff that worked for me. throwing up made my migraine even worse and nothing was helping, i had to stay in the hospital for an extra day to make sure it went down, it eventually did and i went home, but my trouble wasnt over the next day my headache got worse and i threw up all day and couldnt eat or drink then i was fine for a few days and i threw up all day again and couldnt eat or drink anything. i have been getting blood draws weekly and the week after i got out of the hospital my platelets dropped about 100,000 they werent concerned because i guess it happens alot..but this week on wednesday it dropped again to 29 thousand so the day after, on thursday i got another blood draw and it dropped one thousand, then friday(yesterday) i went to a special blood doctor and she said she didnt want to give me another ivig till my platelets went down bellow 10,000. she also made me an appt next thursday to get a bone marrow sample from my hip and im really scared about that. hopefully i get better so i can go back to my normal life i had before all this happened.

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Re:Just diagnosed 8 years 9 months ago #9222

  • 28lorelei
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hi, I'm Lara. I've had ITP as long as I can remember, and it runs in my family, which I've heard is rare? Anyway it's very mild for me, so I don't have major issues. I will be getting my wisdom teeth removed soon, though. Any tips or ideas on what would be the best way to do that?

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Re: Just diagnosed 8 years 9 months ago #9279

  • softdesk
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Hey my name is Francine but my friends and family call me Franny and i am 9years old im a soccer player but not to long ago i found out that i had ITP it really affected me and my family :(. At first me and my parents did not know why i was brusing we were really getting scared. One day on the 4th of July i had fell and had broken my arm so i went to the Doctors office and my parents asked him to take a bood test and thats when i found out i had ITP so a couple hours after that i went to the hospital where i got my first IVIG i was very scared at first but my parents had hug me and told me that everything was going to be ok then i felt very comfortable :).

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Re:Just diagnosed 8 years 9 months ago #9280

  • softdesk
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Hey Shayna- Im Francine but u can call me Franny and im 9years old i think what you had said was very worthy and also very nice please write back :kiss:.

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Re:Just diagnosed 8 years 9 months ago #9495

  • pfisterjm2
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Hi I'm Joey.Im ten years old and when I got diagnosed my count was 2,000.After I got my IVIG my count went up then down. :(

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Re:Just diagnosed 8 years 8 months ago #9859

  • 28lorelei
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Hi Lara again, just had a test today, don't know results yet. Getting my wisdom teeth out soon :(

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