Amin, et al

The below article may be of interest for those of you who have children with low counts.

www.ncbi.nlm.nih.gov/pubmed/23462246

I suspect if you ran this survey again in the UK, the non-treatment percentage would be much higher still. The tendency here is to only treat new paediatric patients if there is active bleeding, regardless of what the count was. As I am finding however, they will treat children if they think that their activity level is dangerous for their count.

True enough. I'd love to see the percentages in the UK!

Sandi:
thank you for this information.
it would be interesting to know what form of treatment was recommended for children by the 58% of the doctors who did not recommend the 'wait and see' approach. we certainly would advocate for the 'wait and see approach'
do you know of anybody who has done a anti-platelet or anti-neutrophil antibody test. our hematologist says that this would confirm diagnosis of autoimmunity activity as cause for the bicytopenia in our son

I've had these tests done. The anti-platelet antibodies one was done by a drug company for research purposes. Last I heard they had found that a lot of people don't seem to have antibodies. It's either that their ITP has come about by some other defect in the immune system or that their antibodies involved can't be identified yet. My test was positive for antibodies but that's all I know. Every now and then they take ten tubes of blood from me but as is the way with research, we don't get to know what they find.

The anti-neutrophil antibody test I had done was also positive. I had it done to diagnose the cause of a sudden neutropenia. Bicytopenia is generally called Evans Syndrome but in my case the two cytopenias were unconnected and the neutropenia has now resolved.

Neither test is done routinely because there's no advantage in knowing. Treatment is the same whether positive or negative for antibodies. I imagine you could get tested privately for a price if you wanted to but I'm not sure how much use it would be.

Amin - the antibody tests are not reliable for the reasons Ann stated. I also had an anti-platelet antibody test and it didn't help us in any way, shape or form. I knew that I had a high presence of antibodies, but knowing that didn't give me any advantages.

The people who test negative are treated with trial and error the same way the people who test positive are.

Has your doctor mentioned Evans Syndrome?

Ann
If I may intrude. What was the cause of your neutropenia and how was it resolved?
Sandi
Yes, our doctor has mentioned Evans Syndrome but reckons that the management does not change.
I guess one reason why he has talked of antibody tests is because we keep looking for reasons for the condition.
He has also suggested a repeat of the BMB or aspirate, which we are resisting. We do not think it is necessary.
Your opinion?

Amin:

Under normal circumstances, I do not feel that the biopsy is usually necessary. Your son has two other circumstances though; neutropenia and non-response to treatments. I wouldn't want to second guess that suggestion.