I was told my son had itp in february

I was told in febraury that my son had itp, but that i should not worry because it should clear up on its own within 6 months. So I leave the St.Judes clinic thinking ok im really scared but lets wait and see, I spend the next couple months trying to avoid the internet and I didnt talk much about his platelets, then one day my son starts crying about his legs hurting and i notice all these red spots on him so back to St Judes. The doctor tells me that yes his platelets are low and its been six months but maybe i should just give it more time. I leave feeling terrified and alone.I called our pediatrician and he said he didnt know what to do. So then he calls me and says we need to go to childrens hospital in Birmingham. we go next week, but im scared its goign to be the same nonsence as at St Judes. and now my son cries everyday with his legs, he as red dot all over his chest and face and my doctor tells me not to get my hopes up we may never know whats wrong. Im willing to go anywhere and do anything to make him better but so far I havent found much in the way of answers.

With that much Petechia (red dots) pain in legs and crying, I would bring him into the Emergency room, so they can check his counts. I would not allow anymore time. Seems like the Dr's are not familiar with ITP. There is no definate cause of ITP. Many things that can trigger the disorder. If it was my child, I would bring him to the Emergency room.

It is fairly usual and becoming more so as time goes on, not to treat children with ITP unless they have bleeding symptoms, nosebleeds that don't stop, blood in the urine and so on. Otherwise watch and wait is honestly the kindest option as the treatments are all fairly horrible with often painful and upsetting side effects.

I wonder if his leg pain is really pain or fatigue. When my counts are low my legs feel very heavy and I just want to sit down. If he really does have pain then that is not ITP and needs investigating separately.

The parents will chime in soon, some treat and some don't so you will get some differing views.

Six weeks into our ordeal and we have treated because the # goes so low without treatment 2k initially and 8k 10 days after IVIG.

Our Ped. Hematologist said fully 1/3 of drs do not treat, 1/3 only treat under 20k and 1/3 treat under 10k.

Don't assume that the leg pain is connected with the ITP because it might not be - have you mentioned to the GP and explored other possibilities? It might be a symptom of something else altogether which can be resolved easily - for example, my son has a lot of leg pain which seems to be connected to hypermobile joints.

Your doctor is right to say that you might never get an answer for ITP, but that doesn't mean the end of life as we know it. Lots of children live very normal lives with ITP and a lot end up recovering after a period of time or years = my son is currently enjoying higher counts than he's had for the last two years. although we have no idea why. Children with ITP get petechiae and bruises, but they aren't really very important in the scale of things - ITP is only really worrying if your child has actual bleeding. As for treatment, good doctors these days would want to balance the risks of the treatment against the risks of the condition, and in a lot of cases, this means that they choose not to treat the ITP. In the UK, very few children receive treatment of ITP, and they have the same outcomes as children in the US who do receive treatment.

I hope your trip to the new hospital moves you forward - try not to worry too much!

Ali