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Worth getting a second opinion?

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9 years 3 days ago #55823 by kayoh
Worth getting a second opinion? was created by kayoh
My 4 y/o son was diagnosed on 9/3/16 with 4000 platelets. We have a good hematologist who I really like and we are in a fairly large city (250,000 population) in an area with a good medical community. But in the month we've been through 3 rounds of IVIG, WinRho, prednisone, and Dexamethasone and his platelets still haven't gone over 14, with the low being 3. He's had minor symptoms (a few petechiae, oozing nosebleeds and mouth blood blisters) but nothing earth-shattering. Our next step is probably Promacta.

I'm just wondering if it's worth getting a second opinion or if this is pretty much all that can be done. It's not like there are thousands of treatments for ITP, so her plan of action seems to be pretty reasonable to me. Would a different doctor recommend something different??
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 2 days ago #55825 by mrsb04
Replied by mrsb04 on topic Worth getting a second opinion?
Kayoh

That's an awful lot of different treatments in a very short space of time for such a little one.

I would definitely be seeking a second opinion. Luckily for us in the UK health care, for the time being, remains free.

The link below is to a paper that appears well referenced and is only a year old so may well be of use to you

hrcak.srce.hr/file/218514

Kind regards

Anne
9 years 2 days ago #55828 by
Replied by on topic Worth getting a second opinion?
I know nothing about children and ITP since I am an adult with ITP - but I have said I would not like to take Dex.

I'd get a 2nd opinion - as Anne said that is a lot of different treatments in a very short period of time! Did any of these treatments overlap?

I would want a pediatric hematologist.

I'm really sorry your son, and you, are going through this!
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9 years 2 days ago #55830 by kayoh
Replied by kayoh on topic Worth getting a second opinion?
Thank you, the dr we're seeing is a pediatric hematologist but that's an important distinction.

I'm just curious if a different dr would prescribe more/different treatments, or fewer treatments and more watchful waiting since it seems to be so refractory. We have already had a bone marrow biopsy to rule out malignancy.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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9 years 2 days ago #55831 by Hal9000
Replied by Hal9000 on topic Worth getting a second opinion?
Concerned newbie here. Do you recall your son having a cold/virus in the past few weeks.
ITP Types and Treatments by HAL
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9 years 2 days ago #55835 by tamar
Replied by tamar on topic Worth getting a second opinion?
Kayoh, I agree a second opinion is a good idea. I favor University medical centers, and actually checking the biographies of the doctors available to see who specializes in "benign hematology".
The following user(s) said Thank You: kayoh
Moderators: jaycharness
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