Friday, September 10, 2010

Thalassemia update

I spoke to our Pediatrician today about my many questions about her diagnosis of thalassemia for my 2yo.

In speaking to her tonight, I found out that the lab tests they did were NOT conclusive and did not actually show thalassemia. They only showed a "persistence of hemoglobin f" - which, from what I can tell, CAN be associated with thalassemia but also with other things.

The Pediatrician told me tonight that thalassemia was her "best guess" but in no way was it a sure diagnosis. She wants to do more testing in a few weeks.

Monkey6's actual blood work came back showing that her iron levels were *fine*, but that her hemoglobin was low.

Given our complete lack of family history and us being of the entirely wrong ethnic origins, I'm just not believing that Monkey6 has thalassemia.

And, given her complete lack of *any* symptoms at all - I'm just not convinced that this lively, intelligent, and ENERGETIC child has anything seriously wrong at all.

The Pediatrician closed by telling me to "make sure she takes her iron supplements". Aside from the fact that Monkey6 hates the supplement and isn't really willing to take it, I don't understand WHY I should give her an iron supplement if her iron levels are *good* [as the doctor said herself two minutes before she told me I had to supplement].

In fact, at this point, I don't think I trust this doctor at all.

I am pretty upset that she told me my daughter had a life threatening disease without being *absolutely certain* it was true - that was really kind of mean actually.

And this all makes me sad, because up to this point I have absolutely LOVED this doctor and trusted her completely. It is just such a weird situation. I have no idea where to go from here.


  1. Which ped is this, Kelly, if you don't mind my asking? That really isn't at all reassuring how she "diagnosed" it!! We love our ped, although I don't know if she's currently taking new patients...

  2. I don't know how the system works in the US - is it possible to get a second opinion without your present doctor knowing? You can do that in the UK.

    I am praying for you and your family.

    God bless.

  3. It can be so hard to find a good doctor.

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