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My child has ITP..

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10 years 8 months ago #45685 by Elizabeth5
My child has ITP.. was created by Elizabeth5
Hi MY 7yo has had ITP since Nov09,13 she has had steroids,IVIG,and now chemo treatments..Is there anything else that we can try that doesnt have to many side efects? that you or ur child have tried..If she dont have the treatments then she bleed and bruises alot.. I really dont want to have her spleen taken out if i dont have to cause as we all know its not a 100% that will work..She has had a bone marrow,lyam,and lupes test done..She has been to MUSC but now we take her to Dukes...If anybody has any help i would love to hear it..Thank you in advence..
  • 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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10 years 8 months ago #45696 by Sandi
Replied by Sandi on topic My child has ITP..
N-Plate has been helpful for some children. It often works and has few side effects.
The following user(s) said Thank You: Elizabeth5
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10 years 8 months ago #45714 by juliannesmom
Replied by juliannesmom on topic My child has ITP..
At age seven, there's a good chance she will go into spontaneous remission at some time and will be glad one day to still have her spleen. You didn't mention her counts. If she tolerates low counts okay, watch and wait is an option. My daughter was followed at MCG in Augusta, GA, and we only treated as needed. She had problems with nosebleeds and bad periods at low counts. After about a year and a half, she spontaneously remitted and is fine now.
Norma
The following user(s) said Thank You: Elizabeth5
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10 years 8 months ago #45733 by Elizabeth5
Replied by Elizabeth5 on topic My child has ITP..
Hi her counts stay between 5 and 20... But she has bad nose and gum bleeding..When we first found out she was at 15and she had bruising everywhere and her nose and gums bleed all the time.. They told me at the 6month mark she has the harder type to treat because its her liver and spleen not just her liver..but MUSC say it was just her spleen..Im really confuesd about it all and i guess i still dont understand it all.. :(
  • 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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10 years 8 months ago #45739 by Sandi
Replied by Sandi on topic My child has ITP..
Elizabeth:

I've never heard of distinguishing a 'type' of ITP by liver or spleen. There is a test in the UK that can tell where destruction is and unless you went there and had that done, they wouldn't know where destruction is. Knowing that does not determine how hard ITP is to treat, it just let's you know whether or not a splenectomy would be initially successful or not.
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10 years 8 months ago #45793 by Elizabeth5
Replied by Elizabeth5 on topic My child has ITP..
Well at dukes they r the ones that told me about the two diff kinds the one that easy to treat and the one thats not so easy to treat...they r the ones that put her in the study for ITP..
  • 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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10 years 8 months ago #45794 by Sandi
Replied by Sandi on topic My child has ITP..
Hmmm. I haven't seen any info about that. Do you know what the study is?
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10 years 8 months ago #45795 by juliannesmom
Replied by juliannesmom on topic My child has ITP..
You may want to try a little extra vitamin C for your child. Just a little, as too much can cause loose stools. (If that happens, you just trim the dose.) The extra vitamin C will not help the counts, but it helps some folks to have less bruising and fewer nosebleeds and gum bleeds. It seemed to help my daughter's blood vessel integrity. She looked and felt better with the extra C. I would suggest capsules, opened and added to her juice, or perhaps just switching to a juice with extra C. The tablets are sometimes so tart they make even an adult's eyes water.
Norma
The following user(s) said Thank You: Elizabeth5
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10 years 8 months ago #45826 by Elizabeth5
Replied by Elizabeth5 on topic My child has ITP..
Thank u Mrs.Norma i will try the C..Mrs.Sandi i will let u know the name of the study when we go back to Dukes the first week of Feb..
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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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