ITP or something else?

Has anyone's child been diagnosed with ITP and then it's turned out to be something else?

I ask because our daughter's haematologist is just presuming that it is ITP that she has and she doesn't seem totally conviced. Our daughter didn't suddenly get bruising after a virus, she has always bruised since becoming mobile. The haematologist said that there could be platelet function problems as well as having ITP, but her count is too low to be able to check this. She said they would do a bone marrow biopsy when she is older (not sure how old) to rule out other things and she mentioned something that could start off destroying platelets but then could destroy other things later. This sounds quite worrying, would this be lupus? or something else? Also, I have all symptoms of a bleeding disorder myself. My platelet count is fine though, but it seems a bit of a coincidence to me.

I hate this not knowing and worrying that it could be something worse than ITP or just something else and it sounds like it could be years before we find out. Has anyone had a child diagnosed with ITP and it turns out to be something else? Or has anyone got any ideas what else it could be?

It sounds as if the haematologist doesn't have a clue and is just covering all bases. Ask for a second opinion. You can either ask the haematologist to refer you or go back to your GP and explain and get their support for a referral. I'd definitely do so, you deserve to know what's going on.

Sometimes ITP can be the first symptom of Lupus, yes. Lupus can take years to develop and in the absence of symptoms, it cannot be diagnosed.

In the meantime, try not to spend time worrying about it. It may never happen. If it does, you'll deal with it. I had a doctor tell me in 1988 that I had something in my bloodwork that indicated possible future Lupus. It didn't actually happen until 2005 when I developed physical symptoms. I never spent any time worrying about it and I'm glad I didn't.

Many platelet function tests can be done with blood work...she could check that if she really wanted to.

Grasshopper if you want to find a doctor who is an expert with childhood ITP, you could do no better than call the UK ITP Support Association and get their advice. They know who's who and it depends on where in the country you live as to who you might ask to be referred to.

Hello,
Sorry about all the worry that you have to deal with, I do believe that you should see a different doctor as well. My daughter was dx with ITP at the age of 12 months old. Now she's almost 18 months. We didn't have a bone marrow biopsy but had all the other tests with blood work. They ruled out so many other platelet disorders because with ITP when you actually look at them on the microscope they appear large is what our hematologist said. With other blood disorders they are smaller. Any test I ask for I am given. They checked my daughter for lupus with her blood work, it came back normal. They checked her kidney's and her liver with blood tests. Checked for bacterias in her system with blood work. And checked for a few other things as well with blood work. So therefore she is saying it's ITP. If all of her other counts are fine, it's most likely ITP. My hematologist did say once dx it does take some time for the platelets to get back to normal. She said 40% of children who get it recover within 6 months, while 60% within 9 months and 80% within a year. So it does take time if it goes away on it's own. But we still have monthly visits with our hematologist. And my daugher, Mia, gets her blood drawn anywhere between 2 weeks and 1 month. Just see a different doctor I suggest. Someone that makes you feel confident.

I haven't been able to reply for a while, but I just wanted to say thank you for your replies and advice. I think you are probably right about asking to see someone else and thank you for the idea of phoning the UK ITP support association. It seems silly but I feel really bad asking to see someone else and I know that it would mean a 6 hour round trip instead of being in our own town. We have an appointment in about a month so I think I will try to be a bit more forceful about wanting answers.

I noticed that I had spontaneous bruising on the side of my knee this week.I have had a couple of purple bruise like dots that have been there for a few months, but sometimes there are more than others and the other day this suddenly turned into a big bruise. This along with all my other symptoms seems too much of a coincidence so I am going to push to find out if there is a link and for a proper diagnoses of Hannah.