TOPIC:

My son has had ITP for 3 years. The only thing that worked long term was DAPSONE. It kept him stable for almost 9 months and then he fell again so we took him off. He is currently back on it as my attempt to control things in between WinRho treatments and it has made his last treatment of Win RhO last almost double the time it usually lasts. The dr's always told me from he beginning they only treat if he has symptoms of active bleeding OR if very low counts. He is 24,000 as of this past Monday and so a treatment is right around the corner (probably 2 weeks)He gets treatments when under 10,000. I suggested do win rho when needed as a temporary fix as I am not ready to take his spleen out. We did IVIG originally, and again another time. He got much sicker with that than the whin ro and the win rho is a much shorter time span in the hospital, 2 hrs verses 8-10. We have done steroids. I did venture this summer with what I would call the ONLY actual cure for ITP, using RITUXIN. It was 4 weekly infusions and did nothing for him Very disappointing. I know there is the new drug to stimulate the bone marrow but there is evidence of scarring of the bone marrow and life term reliance on the medicine, neither of which I want for my son. I have reached out to a few homeopathic dr's but there isn't ever an exact thing they'd suggest and want $ up front. I've tried blood vitamins to increase platelets and didn't notice a change. I'm interested in any specific options people have tried and had success. DIET, VITAMIN C, ETC.

Have you tried just not treating? This is the normal course of action for kids with ITP in the UK, and it appears to have the same outcomes with none of the side effects of treatment. My 15 year old son has had ITP for nearly 5 years now, and his normal counts are 10-15, occasionally going below 10 or up to 20 or so. After 4 years he tried rituximab with no effect like your son, so now we have reverted to no treatment again. He has a pretty much normal life, makes few concessions to ITP, and sees the doctor every 3 months or so. Not treating can be a viable option.

Yes we have done that but in his case it seems he is dropping lower and lower as time progresses. I get very nervous when he's at three or 4000 with the risk of brain bleeds. Have you looked it all into diet vitamins? I see a little bit out there here and there and wonder if any of it holds true.

The risk of an intercranial haemorrage is really low - Its a tiny risk rather than a likelihood at any count. Even at a count of 1, my son wouldnt be treated unless he had bleeding symptoms. I dont really believe in vitamins etc beyond having a norrmally healthy diet,. I am sort of moderately convinced by auto immune illnesses being caused by gut problems, but my son didnt have h-pylori and our short term experiments eliminating wheat and lactose havent had any effect. Thats not to say that it might not work for other people though.
Treating symptoms rather than counts makes complete sense to me because some people have very few symptoms at counts where other people have a lot of problems - 3 for your son may be the same as 20 for someone else. My son is (reluctantly admittedly) allowed by his consultant to play soccer matches with a count of 20 - although he has played at pretty much any count against advice over the last five years - he is still here

We are at the point of opting for no treatment. My son is 9 and had ITP at 3yr that went into remission after a few months of steroids. He had it again at 4yr and we opted for no treatment and it went into remission after a few months. Now he has had it for a year and none of the treatments we have tried have worked. Our options now are Rituximab or Splenectomy. We aren't ready to try either of these right now. His platelets are consistently between 5 and 20 and have been for sometime since none of the treatments are working. I am on the side of only treating if there are bleeding symptoms other than Petechiae and bruising. We are still allowing our son to play soccer, basketball and baseball. At some point we just can't keep him in a bubble forever.