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Specialists for ITP only

  • stefanielandreth@gmail.com
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8 years 3 months ago #59618 by stefanielandreth@gmail.com
Specialists for ITP only was created by stefanielandreth@gmail.com
My son was diagnosed in March of 2017 with ITP. He was immediately sent to a Children's hospital. The Dr's treating him are hematology/oncology. Sometimes I feel like the staff of this clinic "over look" my concerns as they see so many children with more devastating illnesses, (Cancer).
Anyone have this issue or have an idea of other specialists? I don't want to change facilities/providers, but I am curious.
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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8 years 3 months ago - 8 years 3 months ago #59619 by D.Mann
Replied by D.Mann on topic Specialists for ITP only
Hemotologist are blood disorder doctors. Ask them how many ITP patients they have. Don't be afraid to get a second opinion. My doctor is at The Center for Cancer and Blood Disorders. The two go together my doc told me.
  • 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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8 years 3 months ago #59620 by Sandi
Replied by Sandi on topic Specialists for ITP only
Stephanie:

There are ITP specialists, but they are far and few between. I saw one once. It took all day and I didn't get anything more than my regular hematologist was giving me. At the end of it all, she told me to keep taking Prednisone as needed. That's not what I wanted to hear.

The thing with childhood ITP is that it is usually acute and is considered to be a benign disorder. It's fairly common after illnesses or vaccines. The current trend is not to treat children at low counts, although they tend to do this more in the UK than in the US.

HOwever, I know it's very frustrating as a parent to feel like you are not being heard. For your own peace of mind, it never hurts to get a second opinion. You always have that option and you just might hear something from a new doctor that you're not hearing now that might make you feel better.

Can we help you with any of your concerns in the meantime?
  • stefanielandreth@gmail.com
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8 years 3 months ago #59626 by stefanielandreth@gmail.com
Replied by stefanielandreth@gmail.com on topic Specialists for ITP only
Thank you. I know in my area hematology and oncology are always together in practice. It doesn't seem that it's different in other places! I know the affiliate that my son goes to is well known for ITP treatment. I will try to relax!
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8 years 3 months ago #59627 by stefanielandreth@gmail.com
Replied by stefanielandreth@gmail.com on topic Specialists for ITP only
Thank you! I was hoping to hear that in larger area's that hematology would be seperate from oncology. I feel like at first it was a big deal. then after 3 months noone seems too concerned !
  • 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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8 years 3 months ago #59630 by Sandi
Replied by Sandi on topic Specialists for ITP only
Yes, hematology and oncology are usually combined. Things are always hectic at first, then it calms down. That is usually the experience that everyone has.