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!
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?
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?
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.
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
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
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