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Should a 3 year old be given Promacta

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9 years 4 weeks ago #55591 by 2tleititisa
Should a 3 year old be given Promacta was created by 2tleititisa
Hello everyone!

WE have been working with my daughter since June 2015 with ITP. Have tried steroids didn't even change her count number. IVIG works but only for a couple of weeks or so. Recently after us saying no about giving her WinRho, when decided to give a try. She went in with a palette count of 8,000. AFTER the treatment count went down to 7,000! I was so upset with all the side effects It could bring and on a positive note it didn't do anything bad. BUT didn't help either.

Please help or give any information to help my baby Ava!
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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9 years 4 weeks ago #55593 by Hal9000
Replied by Hal9000 on topic Should a 3 year old be given Promacta
Sorry, total newbie here. Curious. Did the doctor talk about NPlate and why Promacta would be better for her?
I thought I had read about a small percentage going into remission after taking NPlate, but not for Promacta. Don't know...
Are there any other blood issues besides low platelet count?
ITP Types and Treatments by HAL
9 years 4 weeks ago - 9 years 4 weeks ago #55594 by
Replied by on topic Should a 3 year old be given Promacta
You will get more responses if you put your post in the Parents With Children section.

How soon after the WinRho was the CBC done? When was her last count and what was it?

Breaks my heart when little ones (and their parents)have to deal with this - Ava is darling! Sorry I can't give you any help, I'm an adult with ITP.

Good luck!
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9 years 4 weeks ago #55597 by alisonp
Replied by alisonp on topic Should a 3 year old be given Promacta
Do you need to give any treatment at all?
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9 years 4 weeks ago #55598 by Rob16
Replied by Rob16 on topic Should a 3 year old be given Promacta
You are right to be concerned about the side effects. Especially at Ava's age the risks of not treating the ITP less than side effects of the medications used to treat ITP. That is why for many experts the standard care is to "watch and wait" and only treat when actual symptoms appear, not just bruising and petechiae, rather, nosebleeds that won't quit, bleeding gums, and more. Many children can go much lower than 7,000 without any symptoms at all. How are Ava's symptoms?

One caveat is that watchful waiting works best if you already know that there is a treatment that will work to raise her counts if needed. It is odd that Ava doesn't respond to prednisone. Are there any other out of range counts on her blood tests?
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9 years 4 weeks ago #55602 by TerriC14
Replied by TerriC14 on topic Should a 3 year old be given Promacta
I know Promacta has been approved for children for about a year, but I am not sure of the minimum age. WhenI have more time I will try to find the release and post it.

One practical point is that it is pill form, not scored and I do not believe it should be crushed so I am not sure how she would be able to take it. The 12.5 mg pill is smaller than the other doses but I can't imagine a three year old swallowing it.

The other point is to make sure the doctor is familiar with the drug, most Pediatric Hematologists have not worked with it very much.
  • mrsb04
  • Offline
  • 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 4 weeks ago #55604 by mrsb04
Replied by mrsb04 on topic Should a 3 year old be given Promacta
This might be of use
www.gsksource.com/pharma/content/dam/GlaxoSmithKline/US/en/Prescribing_Information/Promacta/pdf/PROMACTA-MEDICATION-GUIDE.PDF
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9 years 3 weeks ago #55674 by 2tleititisa
Replied by 2tleititisa on topic Should a 3 year old be given Promacta
No other blood disorders. They have mentioned everything that they have not tried. Just a scared mom but this site helps. Lately I have been just been against everything since her last WINRHO scare. I mean she still goes once a week for blood work. But she has never had any bleeding THANK GOD so severe or anything uncontrollable
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9 years 3 weeks ago #55675 by alisonp
Replied by alisonp on topic Should a 3 year old be given Promacta
If she doesn't have bleeding then not treating at all is a really viable option. And you could look at cutting down the testing a bit and just relying on looking at symptoms?
The following user(s) said Thank You: 2tleititisa
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9 years 2 weeks ago #55788 by 2tleititisa
Replied by 2tleititisa on topic Should a 3 year old be given Promacta
That's what I have been thinking about not giving treatment. Well of course unless she really needs it!
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9 years 2 weeks ago #55789 by 2tleititisa
Replied by 2tleititisa on topic Should a 3 year old be given Promacta
I agree!
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8 years 6 months ago #58635 by 2tleititisa
Replied by 2tleititisa on topic Should a 3 year old be given Promacta
No other blood issues but supposedly my husband and I had a second opinion along with her current doctor who says maybe wait till shes 10 for NPlate hopefully this is over before than
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8 years 1 month ago #60209 by 2tleititisa
Replied by 2tleititisa on topic Should a 3 year old be given Promacta
No other blood issues. Sorry such a late response with work and Ava, just busy and stressed. The doctor actually has said both Promacata or NPlate
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8 years 1 month ago #60211 by 2tleititisa
Replied by 2tleititisa on topic Should a 3 year old be given Promacta
yes what I have been doing it seems to work best rather than all the blood work. She just recently was admitted aug 4 because her count was 3! And they decided to do IVIG which works but she went back today and it dropped from last 97,000 to today 29,000 and that's just 1 week
  • mrsb04
  • Offline
  • 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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8 years 1 month ago #60212 by mrsb04
Replied by mrsb04 on topic Should a 3 year old be given Promacta
If I was little I don't think I'd be vary happy to have regular injections
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