Discussion Forums > Thalassemia Major

Miracle?

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Manal:
I totally agree with Sajid

Manal

Christine Mary:
Well, we have great insurance, and we do not pay anything out of pocket, so i doubt that is the reason. We go to Phoenix childrens hospital, and they have a great reputation for customer service and care. I certainly hope they wouldnt exploit me like that! :huh

His reasoning is.... She had 2 electrophoresis tests done that prove 100% fetal hemoglobin. He actually might be sparing me the cost of the DNA test?

My theory is that if her hgb keeps improving, we need to investigate further. I know its normal to fluctuate a couple of points up or down now and then.

I can see an intermedia going up and down but a major?? I dont know. Why would a major increase over a 3 week period instead of drop????? I dont understand. UNLESS she is an intermedia. All I know is I will not question it anymore, and I will take it!!!

I started Lauryn on cereal and peaches and she loooovvveeesss it!!!!! :pop :pop :popcorn :food

Love to all,
Christine

Canadian_Family:
There is absolutely a logical reason for increase in HB level. Lauryn is still under one and she is well capable to produce Fetal Hemoglobin, the body tendency to produce Fetal Hemoglobin increases when the Adult Chains fails to work. The doctor will not transfuse her until her Fetal chains stop working. This is exactly similar to my daughter situation where she kept on going without transfusion for nine months until comes a point where she gave up. Actually come to think about it, Lauryns heart rate is telling that her body is working extra hard to compensate for falling HB levels. Well hang in there and enjoy Thanksgiving.

Regards

Christine Mary:
hi canadian,

the dr says her heart rate has improved and is at a normal pace right now. he said it is not working hard. it was before at 170 and now its at 140.

Zadkhi:
Christine, that is, of course, fabulous news!  :hug

I agree with what Jean said and the bit about fetal hemoglobin.

Since Lauryn is still so young, it's a bit difficult to predict just 'stable' her hemoglobin is at this moment because her fetal Hg is still fluctuating.  When her 'adult' Hg levels start showing themselves, you will have a better indicator.

At this point though, that's very heartening to hear that her levels have increased and that she has a healthy appetite for the cereal and peaches!  I adore peaches myself.   :biggrin

As for the DNA test... without looking at the DNA itself, how would you know exactly what sort of thalassemia or anemia she has and what sorts of deletions or abnormalities there are?   :huh

But I suppose electrophoresis combined with looking at the blood through an electron microscope would be enough to make a fairly specific diagnosis in most cases.

I'm guessing that under the electron microscope, thalassemia looks a certain way - I know with HgH Disease, there are particular indicators combined with electrophoresis results that more or less point to HgH with little room for anything else.

100% fetal hemoglobin usually indicates either sickle cell anemia or beta thalassemia major and since sickle cell also has a very particular look to it, the conclusion is that the 100% fetal Hg is indicative of beta thal major.

 :huh

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