Platelets never over 20k

My 13 yr old son has had itp for 2 years. His counts have almost never been above 20k. We did unsuccessful rituxam. A naturopath diagnosed him with lymes and got rid of that after 4 months treatment but no change in platelets. White bc's increased though once eradicated.
My hemo gives us no treatment options. Maybe becuz we haven't pushed for it with negative side effects.Does anyone else have platelets that just stay consistently low? Has anyone heard if there is a way to verify the spleen is actually causing the destruction?

Hi Karen

Long time no speak! I am sorry to hear that the Lymes thing had no effect.

Dougie has been right there under 20 with him for the last 15 months or so - although he did have a virus that bumped him up to about 50 for a few days in the Autumn. Other than that, he seems to fluctuate between 5 and 15 most of the time. Its getting BORING! I thnk Dougie is going to try Elthrombopag (Promacta for you) soon though, so I am hopeful this will work for him. He tried IVIg in January, and it took his count up well for a few weeks, but also gave him the headache from hell so we wouldn't do that again. He won't try Rituximab now because he is so worried about having another IV. I am still not sure about treating, but Dougie has had enough.

There is a test that you can have done in Europe that identifies the location of platelet destuction - its called an indium platelet survival test I think. I don't think that they do it in the States though. It can't tell you if a splenectomy will work (because the liver could always take over the destruction), but if it identifies that the liver is already doing some or all of the destruction, it would definitely indicate that it wouldn't work.

All the best, Ali

too funny, i didnt realize i was writing you!!!!
i d fly to england if i knew they could tell me something definitively )))Is his dr recommending promacta?? dougie is the only other one i have heard that has had counts like Cades. Everyone is concerned when they are at 100k. I'm like seriously. Go enjoy your life and stop worrying..we'd be throwing a party at 100k. We had a party once when he was at 32k.

Karen,

If you try this link, there should be a whole load of discussion and information about the platelet survival test

www.pdsa.org/forum/6-general-itp-discussion/10063-new-to-itp-my-story-attached-have-questions.html?limit=10&start=130#20006

You've got to promise me to meet up in London if you come over for it though!

Unlike Cade, Dougie has never really taken to more sedate sports like golf, and only hears what he wants to hear. And the words "can't" and "shouldn't" appear to induce temporary selective deafness on his part! This being the case, the doctor doesn't feel that he's safe with his count where it is. We wanted to try rituximab, but Dougie refuses to have anything IV since he tried IVIg in January - to be fair, it was a pretty horrible experience. So hopefully this trial study of Elthrombopag will start soon and he will be able to BMX, play football, rock climb, dive, etc etc safely.

All the best, Ali

Oops, right post, wrong page - if you start at page 5 and work towards page 1 you should get all the discussion on the test.

See what I mean? The tiny yellow dot is Dougie.....

Too coool!

love this! totally my inspiration this photo of dougie. We are at the start of this journey so I am learning from all of your more experienced moms. My duaghter Mia was down to 5 and wanted to fly for vacation to see her grandparents. We did treatment and she bounced up to 37 which felt like heaven and they let her fly. (I hope it lasts long enough to get her home!) I am trying to let go into this and i will look at that photo of dougie every now and then, think "and at 8K or something", and breathe deep. I wouldn't wish this on my daughter for anything in the entire world -- but i feel like there must be a lesson in her for ME about letting go where I must.
- Firkins