Newly diagnosed 8 year old with ITP

Hello,
My 8yr.old son was newly diagnosed with ITP Aug. 2014. His platelets have been as low as 2k several times despite steroids and Ivig therapy. WE are moving on to WinRho and are nervous about side effects. Can anyone give advice about this medication? Also advice about next steps would be helpful too. Very anxious.
Jenn

Jenn:

Win-Rho isn't used much these days due to the black box warning, but it was used quite often in the past. Most people do not have side effects and if they do, they might feel a little flu-like for a few hours. Because of the black box warning, doctors are now giving this treatment slowly and they watch the patient carefully, but it wasn't always done that way and most people did quite well.

Win-Rho was the first treatment that I tried when I was diagnosed in 1998. They used to give it as an IV push over a 3 to 5 minute time period. I used to go in on my lunch hour, get the push and rush right back to work. If I felt flu-like, I'd take a Tylenol and felt fine. There were quite a few people who managed ITP with this treatment and preferred it over IVIG and steroids.

I didn't respond to Win-Rho, but many do and a good response can last a few weeks or months as opposed to IVIG which only works for a short time. It also doesn't have the lasting, nasty side effects that steroids do. It used to be considered a fairly easy, well-tolerated treatment until they issued the black box warning due to a very rare but serious side effect. Since they changed the way it is administered, the risk for patients has gone down dramatically.

How are his symptoms when counts are down? Have you discussed a watch and wait option with his doctor?

Sandi,

Thank you so much for responding . Your knowledge and your posts are the only thing giving me any peace of mind right now. We just discussed watchful waiting with the DR. today. He is not comfortable with it but says it is up to us. Since this started Oscar is usually under 10.Currently at 2 now. He looks and feels great aside from lots of bruises and nose bleeds which tend to last anywhere from 15 to 60min.We are also considering chemo.We asked about Nplate but our childrens hosp. is not using it yet.They are getting involved in a study with it soon.

What chemo? Rituxan or the real stuff?

Could you maybe get another opinion? A doctor who is familiar with watch and wait, and N-Plate, might be your best bet right now. A doctor who can provide all options and feel comfortable with them would help you a lot.

Sandi,

Rituxan. We are also going to New York presby. in 2 weeks for another opinion. I would like to hold off on treating him until I talk to them but Im nervous with him being at at 2.He didn't do great with the steroids. HE responded well to IVG but it only lasted 2 weeks and he got terrible headaches.
Thanks,
Jenn

Jenn:

It's very hard to make treatment decisions and I'm sure it's even harder for a child. I have long-term problems from treatments so I can't imagine having to put that risk on a child. My daughter has autoimmune problems also and even though she was diagnosed in her early twenties, we decided on the options together. It is very difficult.

The second opinion is a great idea. I hope you get someone who is experienced and knowledgeable; it can make a big difference.

As far as IVIG, some people are able to avoid side effects by using pre-treatments, staying hydrated (lots of water the day before, the day of and the day after, and sometimes the brand of IVIG can make a difference. It's a shame that the one treatment that usually has no long-term side effects has such awful short-term ones.

Rituxan isn't really chemo; it's a biologic, like Enbrel or Remicade. It only destroys B cells and T cells, unlike chemos which can target many different cells in the body.

You have many options, the hard part is trying to choose the one with the least toxicity.

Hello. My daughter was diagnosed at age 12. She is now 16. Her counts usually run below 10. We have always done the watch and wait thing. She usually ended up needing IVIG (WinRho and steroids have not worked for her) about every 8 weeks due to bleeding issues. She has now been in the pediatric Nplate trial since about June. Her last count was 180K!! Nplate has been a huge relief for our daughter and for us too (not to mention the medical bills). I hope the study might be an option for your son. Good Luck!!

My 18yo daughter has itp, she had stable counts for about 11 months in the 40-50 range. Since July she has been consistently under 10. Her current count is under 5 (that was the labs minimum reporting standard). We are doing watchful waiting. She is fortunate that with as low as her counts are her symptoms are more annoying than serious. She is in general not into contact sports. In terms of activity 18 though is very different from 8, my kids were very active and that might have come in to play more when they were younger.

Good luck with your second opinion, it is so difficult to have to make treatment decisions.

Okay-my daughter was diagnosed 6 weeks ago with a platelet count of 2. Blood draw is tomorrow-but her platelet level is only at 26. She is on 30mg of prednisilone. She has awful side effects-aside from her face and belly being huge-it's caused blurry vision. I feel like my Peds office isn't very knowledgeable and the specialists will only see her once we get her levels to 70 and then if they drop. I'm very frustrated! I guess I don't want her on steroids if it's not helping. I just don't know what to do? Can anyone help?

Jen, why won't the specialist see her until it's 70? That makes no sense on their part. The pedia doesn't specialize in blood issues.

My son responded fairly well to WinRho and didn't have any side effects! IVIG was a different story.