If you were in my shoes, what would you do?

Living in Manila greatly reduces our options. For one, there is no doctor here that is familiar with Rituxan. That, or i havent found him yet. So if you were in my shoes with a son who has been taking preds for 3 years already at 6 mgs daily, what would you do?

Continue preds for the rest of his life VS Splenectomy.

Thanks in advance for those who will contribute...

If you are thinking that you might want to consider rituxan, I would show my hematologist/oncologist a link like this and discuss the treatment.

www.thefilipinodoctor.com/search-drug-details.php?id=20010181

Yes, from what i read here, i am definitely considering. But i dont want a doctor unfamiliar with the drug tbe my sons doctor. And, is it even administered to 8 year olds?

I would consider not treating unless your son's platelet count is really low and/or he has bleeding.

tamar wrote: I would consider not treating unless your son's platelet count is really low and/or he has bleeding.

Yes to both. Petichae and Nose bleeding. Occassional blood in the stool, the works. Latest count on 6 mgs of preds is 20,000 2 weeks ago.

We are currently not using treatments. Brady currently pings between 12,000-20,000. He was on Prednisone for one year. When we decided to stop he was in that same range on the Pred. At that time he was on a low dose, I think 1.5 ml, every other day. About 2 1/2 months ago he dipped down to 9,000 and had a head hematoma with a fall. At this time, we did a steroid burst of 6 ml twice a day for 5 days. He went up to 200,000 and then gradually dropped to the previously mentioned range.

At this point we are putting off treatment other than a possible steroid burst if needed. I think we will address Rituxan if we don't continue to have this current range. However, his current count is 15,000 and he does not have nose bleeds or blood in the stool. If I had to choose between prednisone for long term, splenectomy and Rituxan I would seriously consider Rituxan.

First step is to try and find a doctor you can trust. I would consider slowly tapering off the prednisone and see if you can have similar counts with no symptoms such as the nose bleeds. If it doesn't get better, then venture into Rituxan. Good luck!!

thanks for your reply.
May i ask how old is your son? My son is turning 9 on Dec. HAs your Doc mentioned Rituxan with children? Or are they for teens and adults only...

Perhaps i may consider doing this as well...(the no treatment)

I;m just afraid of the low counts during the tapering of the Preds.....

Yes, rituxan is given to children. My son is 10 and has been struggling with ITP for almost 2 years. His platelet counts do not respond to steroids, so we do not use them. He has been receiving IViG when his platelet counts dip below 5k in combination with symptoms, as well as other medications. We are still trying to find the treatment that will allow his levels to remain in a safe range for a nice period of time.

I would seriously consider doing some research on your own and presenting it to your doctor. This website is a great place to start, and there are other treatments besides rituxan that could be helpful (IViG as I mentioned, as well as some oral immunosuppresants, WinRho).

My concern with long-term steroid usage (especially if your child's platelet count is still crashing periodically) is with the well-documented long-term side effects. For instance, I have a friend who's 42 who was on steroids for 9 years as a child due to severe asthma and now suffers from osteonecrosis (bone death) and now needs joint replacements in her shoulder and knees. I don't say this to cause fear, it's just a danger that has been made clear to me by personal experience.

If your doctor is willing to reach out, the people at Boston Children's Hospital (especially Dr. Ellis Neufeld) are excellent resources for other docs and they really want to share their experiences and successes to help other kids. www.childrenshospital.org/az/Site1138/mainpageS1138P0.html

Kul - I can attest to that! I've been on 15 mg's of Prednisone for about 8 years and have recently had fractures that occurred for no reason. I have an MRI scheduled next week to check for bone necrosis In the past year, I've had surgery for spinal degeneration and two foot fractures. It's getting frustrating to have so many limitations. My Mom is 75 and has osteoporosis and doesn't have this many problems. I'd hate to see a young person have to deal with this kind of stuff. I don't feel old enough for it either!

I'm sorry I didn't get back to you sooner. Regarding the treatment path we took, our hematologist has reccomended Rituxan for us, and originally did when my son was 3. He is 4 now. We have managed to keep his counts around 15,000-20,000 with no treatment. I completely understand your concerns with changing course. I just wanted to offer another perspective.