Baby born to mon with ITP

Hi all - i have chronic ITP with giant platelets (dx'ed 19 years ago) - typically asymptomatic -sometimes bruising. I typically have a machine count of 25 -70k which is often doubled with a manual count (only discovered this during my pregnancy). My now 4 month old was born with a machine count of 60k which ended up being 120k with a manual count. For her 2 month check up, we had a manual count of 137k (wahoo!!!) and her 4 month check yielded a machine count of 60k again. I feel frustrated that our hcp can't get it together to request the same type of count each time so we could get a reasonable idea of what her little body is actually doing.

I have understood that baby's born to moms with ITP, usually see a stabilisation in their counts by their 3 month mark otherwise it couls wind up being chronic also. Does any one have any anecdata on this? Is it still considered ITP if she has sufficient platelets, but they are giant (and can only be counted manually)? She is totally symptom free. I'm also sort of wondering if my itp is maybe something else... Maybe something hereditary? I have had Rho-gam (before preg) and during IVIG and prednisone all with next to no increase in counts. I had a c-section with 24k platelets and required no transfusions....

We have a ped appt coming up, but just want to get some other info.

Ftr, I am aware how lucky we both are to be asymptomatic and my heart goes out to parents struggling with their kids' disorders.

Here is a link to inherited platelet disorders. It would be worth talking to the doctor about.

pdsa.org/resources/other-platelet-disorders.html

I wouldn't say that your daughter will be chronic since her counts are not above normal range. Chronic simply means that a person has had lower than normal platelets for a certain period of time. It does not mean it will be a lifetime battle. Remissions happen all the time, so if it is just ITP due to antibody transfer from you, it could still resolve on its own.

ITP is also now defined as having platelets less than 100k. They lowered the standard for diagnosis, but not on the reference range.