New... sort of

So my son was diagnosed with Chronic ITP when he was 18 months old, oddly enough my husband also has it but we didn't discover that until our son was diagnosed and the doctors began poking around. Both my husband and my son have had pretty minor issues with ITP and neither have ever been treated with medications. With my son we do extra vitamins but that's it. His lowest count on record is 53, his highest is 130. We visit the Children's hopsital Hemo clinic yearly just so they can keep an eye on him but still they have yet to come up with the correct term/name for him. We started with biweekly draws and then went to a bone marrow test which showed nothing else was going on luckily. In the beginning he was very sick and black and blue but now 4 years later you would never know aside from the odd bout of Petekia (s?), his clotting factors are fine so he doesn't bleed. We're told that as he gets older he'll get a little higher and hopefully stay there unless he gets sick but he should be fine. I'm still frustrated with not really having any concrete answers though... anyone else?

Maybe familial thrombocytopenia rather than ITP. They are studying it in the UK and have set up a Familial Registry ukitpregistry.com/page19/Familial/FamilialITPRegistry.html

I completely agree, it has to be something genetic/ familal ITP but they've even done DNA tests on both of them and they didn't find anything at all. Their Hemotologists told us it has to be something genetic but sicne there is no real form of genetic ITP they say they have Chronic Genetic ITP. Do you think there is any difference in saying Familial Thrombocytopenia? Sounds like the same thing right? We live in Canada so not sure if there is much point in joing a registry in the UK.

Shelley