Recommend tests to request?

My three year old son was diagnosed three weeks ago with 1.9K platelets, and slightly prolonged PTT and aPTT, correcting in a mixing study. They checked a few factors and two came back fine, we're waiting for results on the third.

For those of you who have been at this longer, are there any tests you wish had been done earlier?

They don't normally do a lot of tests on adults. Some doctors do, but it's mainly thyroid, spleen scan, etc. It's good that they are being thorough with your son.

Thanks, Sandi. I am new to this and getting the feeling they could be doing more, like testing for different antibodies! I know we are in good hands but I'm a researcher and can't stay away from the literature. Currently reconstructing HAL's 4 types post, which is brilliant!
Nice count in your signature, btw.

I was tested for everything under the sun when my ITP started, the rationale being to discover if it was Primary or Secondary ITP.

Even that is hard to figure out. My ITP started as Primary and changed to secondary 8 years later.

Maria - it's great that you are researching. I don't know if you've seen this, but it might help: www.pdsa.org/resources/other-platelet-disorders.html

Thanks, Sandi! No, I hadn't yet gotten to the "other" section. Very useful.

Sandi
The theory being that ITP could be the initial symptom of something more sinister that would require intervention.

Yes, I know, MrsB. It's just that people sometimes get comfortable with that 'primary' diagnosis. I did.

I'm certainly not comfortable... I also have an uncle (father's brother) who had a *partial* splenectomy at age 12, in 1957 for chronic ITP, which sent him into what appears to be lifelong remission. One of his sons also had an acute episode of ITP at age 6, which resolved following a week on prednisone. My son's hematologist ordered a few factor tests, which have come back normal, but I'm trying to figure out if they need to keep looking, and into what. I also had DVT while on a high-dose BCP in my 20s. I realize that most ITP related genetic disorders are X-linked recessive, and that line does not point to my uncle, and that BCP increases risks of clots, and it could all be a giant coincidence. Or not...

On another note, has anyone heard of partial splenectomy as a treatment? Was that a 1957 thing? It did seem to "cure" my uncle, and left him with 1/3 of a spleen. He has lived a healthy life since.

Maria:

I didn't direct that comment toward you. I tend to point out my own experiences sometimes...maybe too much. I was pretty naive when I was diagnosed. I sure learned from that and try to raise awareness. I wrongly assumed that primary ITP would always stay primary.

My sister also had ITP as a teen back around 1982. She treated with Prednisone and went into remission after a year. She's 52 now and has not had a recurrence. Did the steroids 'cure' her ITP or was she simply an acute case who would have gone into remission anyway? Maybe that's what happened to your uncle? It's hard to say. I've been on this forum for 20 years and can only remember one person who had a partial splenectomy. It didn't work for him. It's not done often.

I think that uncles, aunts and cousins all play a role in the genetic family pool and can be an important piece of the puzzle. Are you familiar with epigenetics? It's a very interesting thing to study.

Sandi, I think what you have done, in terms of sharing your experience, and the fact that you keep doing it is incredible. I have no doubt there are 10+ readers / lurkers for every participant also benefiting from your sharing your experiences. I am positive I have slept better the last few nights after hearing reassurance that 4 small bruises on a toddler were not a reason to panic.

Interesting to hear about your sister! I wonder if ITP is a lot more widespread than any of us know. There must be people walking around with 30k+ that never find out, no?
And yes, who knows what happened with my uncle... He's pretty convinced it was the partial splenectomy, since they had tried prednisone, some prior version of IVIg and transfusions multiple times and nothing kept his counts up. Then, seemingly overnight, he was "cured" after the partial splenectomy. My dad's colleague had a daughter who went into remission after being treated by a naturopath, seven years following her diagnoses (she was 16 when diagnosed, 23 when it went into remission, and is 30ish now). Was it all a coincidence? Impossible to know, I figure...

For my part, my son is still doing fine today - no new bruises, so we are continuing to watch and wait.

Yes, I believe that ITP is more widespread than we know. Many people can have it and never know if they don't have a CBC. My Hemo told me once that when he was sick, his counts dropped into the 60's. They eventually rebounded but it probably happens often. After I was diagnosed and had my second round of steroids, my counts seemed to stay up for a while so I stopped having CBC's for about two years. I had a GP appointment and he talked me into getting one. I didn't want to because I was happier not knowing and avoiding it. But I did get one and counts were in the 30's. I don't know how long they were down there but I ended up back on the Merry-Go-Round of monitoring until they dropped below 15k.

Your uncle could have been cured by the partial splenectomy, but theoretically, it shouldn't work. It isn't done for that reason. Whatever happened to him, it seems to have worked out in his favor!