Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: Should a 3 year old be given Promacta

Should a 3 year old be given Promacta 3 years 5 days ago #55591

  • 2tleititisa
  • Offline
  • Posts: 12
  • Thank you received: 0
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!

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 3 years 5 days ago #55593

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1441
  • Karma: 10
  • Thank you received: 206
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?

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 3 years 5 days ago #55594

  • Melinda
  • Melinda's Avatar
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!

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 3 years 5 days ago #55597

  • alisonp
  • Offline
  • Posts: 1049
  • Thank you received: 114
Do you need to give any treatment at all?

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 3 years 5 days ago #55598

  • Rob16
  • Offline
  • Posts: 1118
  • Karma: 2
  • Thank you received: 266
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?

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 3 years 5 days ago #55602

  • TerriC14
  • Offline
  • Posts: 130
  • Thank you received: 33
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.

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 3 years 5 days ago #55604

  • mrsb04
  • Away
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1277
  • Karma: 7
  • Thank you received: 314

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 3 years 14 hours ago #55674

  • 2tleititisa
  • Offline
  • Posts: 12
  • Thank you received: 0
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

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 3 years 13 hours ago #55675

  • alisonp
  • Offline
  • Posts: 1049
  • Thank you received: 114
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

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 2 years 11 months ago #55788

  • 2tleititisa
  • Offline
  • Posts: 12
  • Thank you received: 0
That's what I have been thinking about not giving treatment. Well of course unless she really needs it!

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 2 years 11 months ago #55789

  • 2tleititisa
  • Offline
  • Posts: 12
  • Thank you received: 0
I agree!

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 2 years 5 months ago #58635

  • 2tleititisa
  • Offline
  • Posts: 12
  • Thank you received: 0
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

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 2 years 1 month ago #60209

  • 2tleititisa
  • Offline
  • Posts: 12
  • Thank you received: 0
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

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 2 years 1 month ago #60211

  • 2tleititisa
  • Offline
  • Posts: 12
  • Thank you received: 0
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

Please Log in or Create an account to join the conversation.

Should a 3 year old be given Promacta 2 years 1 month ago #60212

  • mrsb04
  • Away
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1277
  • Karma: 7
  • Thank you received: 314
If I was little I don't think I'd be vary happy to have regular injections

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
Moderators: jaycharness

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo