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Grandmother of a three year old diagnosed 2 months

  • iljeffreys@mchsi.com
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12 years 11 months ago #28685 by iljeffreys@mchsi.com
Grandmother of a three year old diagnosed 2 months was created by iljeffreys@mchsi.com
My grandson has had IVIG, winro, prednisone and another steroid and nothing last longer than 4 days. He is being referred to St. Judes in Memphis. Has anyone heard of their trial for eltrombopag. So far its had a 75% success rate with no significant side effects. The kids take a pill a day and keeps the platelets up so a normal routine can be maintained. It does not cure but makes it managable?

I went to the St Judes website www.stjude.org

I put ITP in the search area then clicked on Counting on St. Jude. That's where the article is published. On thursday, we will be taking our grandson for a consult and hopefully find out more. His platelets were at 14,000 today so I don't know if he would qualify for the trial but he is no longer getting any more treatments so they will probably be lower by then.
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12 years 11 months ago #28687 by Brandi
Replied by Brandi on topic Grandmother of a three year old diagnosed 2 months
I'm not familiar with anything other than ivig, but I just wanted to say good luck at St Judes.
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
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12 years 11 months ago #28703 by meador
Replied by meador on topic Grandmother of a three year old diagnosed 2 months
Please keep us updated. I will be thinking of you.
  • 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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12 years 11 months ago #28713 by Sandi
Replied by Sandi on topic Grandmother of a three year old diagnosed 2 months
How old is your grandson? There are not too many children here that have tried Promacta. Most of the children either do not treat at all or have had some luck with the first line treatments. Promacta is fairly new has mostly been used for adults at this point.
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12 years 11 months ago #28715 by Ann
Replied by Ann on topic Grandmother of a three year old diagnosed 2 months
Looking at the title of the thread, the grandson is 3 and has had ITP for only 2 months. Therefore he won't be eligible for any studies because he's not regarded as having chronic ITP. The likelihood is that St Judes will say to watch and wait. Hopefully the count will rise and your grandson will be over ITP in a few months.
  • 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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12 years 11 months ago #28741 by Sandi
Replied by Sandi on topic Grandmother of a three year old diagnosed 2 months
Duh - missed the age right in front of me. Good luck today!
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12 years 11 months ago #29016 by jrosenfe
Replied by jrosenfe on topic Grandmother of a three year old diagnosed 2 months
We are on it. There is another mother as well on this board. My daughter was part of the initial trial last June for kids 1-5. She took the liquid version and was on study. It took some time to work but it has and it has well. She has been in the 100-200 range now for some time. We did have to take her off (part of the requirement) and her numbers fell to 2K, so back we went on. She now takes 50 mg every night before bed. No side effects.

It was a hard decision since we don't have any idea of the long term effects but we were tired of doing treatments. She hated them. She was 3.5 when diagnosed and is 6 now and Eltrombopag has given her a normal life of sports and school.

If you have questions, please contact me and I am happy to answer them all.

Jennifer
Moderators: jaycharness
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