SCARED

My son was diagnosed with itp on sept 23, 2012. He was treated with winrho on that date and it did nothing for his platelets except give him bad side effects. And he was hopitalized again on Oct 2nd and given ivig which also did nothing for his platelets and gave him bad side effects as well. He was given another course of ivig on Oct 4th and when he was released on Oct 7th his platelets were only at a 4. He has been on prednesone since being home and his platelets tested under 5 yesterday Oct 15th. Im so scared because his platelets aren't responding to meds and his count is so low. Is this typical of itp? I can't do anything but cry and I can't let him see me cry because I don't want to scare him. He is only 9 and not sure what is happening to him.

Hello--My son has been there. He did not respond to any of those treatments either. 15 months later he is ok..and yes his count stayed below 5 also...

I do not think it is typical, but it happens.. I am so sorry you are going through this and it is very scary at first but it does get easier you learn what to look for and how he handles things.

Please feel free to ask anything, share feelings and fears or just vent..There is sooo much support here. There are also some real good post floating around,I think maybe Sandi wrote one for the newly diagnosed, if you can find it, it might help alittle.

Hope things get better soon!

Please don't be scared. My son got ITP at about 10 1/2 so around the same age. He's had it since then, quite low counts, and he's had a nearly normal life all of that time. He plays sports, he goes to scout camps, he rides his bike, rides theme parks and..............most of all he's been ok with counts ranging from 1-100 in that time, mostly 5-15. He's never had a really bad episode of bleeding. He just gets on with his life. In the UK where we live, they don't even treat children with ITP most of the time, so we clearly don't consider it to be the end of the world.

Try to focus on symptoms and not counts. Counts are not important, but bleeding symptoms are - nosebleeds, GI bleeds etc. You can go about daily life with a count of 1 and not come to any harm (Crystal's son is a case in point!). ITP symptoms tend to get better over time, although I've no idea why. My son doesn't even get bruising until his count is well under 10. Take reasonable care, but try to get on with life as normally as possible because it will help both of you. Make sure that you tell your son what is going on and try to include him in decision making - it helps. Try reading back through some of the older posts - there are a lot of children who appeared for a few weeks and then got better, and even the ones who aren't "better" as such are doing really ok.

Things do get better, honestly. I know its hard to believe at the moment, but they do. Your son could still easily be better before Christmas so don't give up hope. But if he isn't, its still not the end of the world

Thank you so much for your reply Crystal Lee. I'm glad to hear that your child is feeling better. I knew nothing about itp before my son was diagnosed and it has been a emotional time for all of us. My son will be having a bone marrow test done on Tuesday which is quite scary as well. I do hope that one day itp will just be a bad memory for him. Thanks again

Thank you for your reply alison. Hearing from parents who are going through and have gone through what I am going through helps. Thank you

I remember when my son had his BMB/BMA it was very scary but it was such a relief after. Are they doing it because treatments aren't working?

I have a question for you Crystal. The doctor discussed today possibly having my son take a chemo drug that hasn't been approved by the FDA for use in children. It makes me very nervous about him taking this drug. Are you at all familiar with it and did your son try it?

Oh boy!! Yes they suggested 6mp and eventually Rituxan..No I did not try them. It has been a whole year now since they suggested the 6mp and I have had many battles with myself but I just can't get comfortable with it...

Please DO NOT feel I am pushing you not to try it, I am only sharing my experience. Good Luck I know how hard this decision can be..

Do you know the name of it?

I don't remember the name it was quite long. But I'm not at all comfortable with the thought of using it. My son's hemo doctor is in New Jersey where we live but I'm taking him on Monday to a doctor in Philadelphia who specializes in platelets.I will discuss the meds with her. Bone marrow on Tuesday then we will have to see what the next step is. I hate all the meds, so worried about the side effects. Thanks for you help

What helped your son get his platelets up? Did they go up on their own?

Well he was 0-3,000 for 10 months, he was 3,000 April, May 9,000 and held, every single count was 9-11 I tried all sorts of things, diet mostly, added lemon (which i still do) I even moved!! Nothing helped I don't believe I was doing anything special in May when he finally went above 5. I am now doing homeopathy and this last count was 19..

I did not treat at all, he sat that low for what seems like forever!! I fought myself and still do at times wondering if that was the right thing to do, but honestly the treatments that they were suggesting just scared me more than ITP itself.

So yes they did go from 0-10 by themselves, but we are still far from out of the woods

I know how you feel about the meds. I'm not sure what to do either. Especially since my son had bad reaction's to both winrho and ivig. I do wish you and your son the best and hopefully one day soon we will be done with itp.

Just wanted to let you know thinking about you today, Good luck! It will be fine, and recovery is fairly quick and easy..

Did you see a specialist yesterday? How did that go?

XThank you crystal. Bone marrow went well last week. Still waiting for results. He was at a 3 after surgery only went to a 6 during the procedure from the platelets he was given I guess. But went in with a 3 as well. So frustrating.