Platelet Disorder Support Association

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!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
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4 years 9 months ago #68547 by MandyR35
New to the group was created by MandyR35
My son who is almost 14, was diagnosed with ITP almost 2 years ago. We have tried all the treatments, the only ones left aren’t even approved by the FDA. It only brings his platelets up to maybe 30,000 for 2 weeks, then drop again to 2,000 or 4,000. We are considering removing his spleen, but I’m scared that won’t help either, and he will be without his spleen on top of everything else. I would love to hear from people that have or haven’t had their spleen removed. Did it help, or did it not help?

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4 years 9 months ago #68561 by MelA
Replied by MelA on topic New to the group
Mandy I was diagnosed in 1989 and still have my spleen - luckily prednisone did work for me, but my counts are still lower than the normal range - so I really can't help you, sorry.

Isn't Vanderbilt University Medical Center in Nashville one of the top hospitals in the country? Wouldn't they have a good hematology department, maybe he could see someone there if it is close to you.

If I were you I'd post your question in the adult section - you will get a lot of responses there I'm sure! Also they might like to know what treatments have failed your son.

Hope all goes well for him!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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4 years 9 months ago #68566 by MandyR35
Replied by MandyR35 on topic New to the group
Thank you! I’ll try that.

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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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