Discussion Forums > Thalassemia Major

Checklist for thal majors?

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BabyI:
Andy-thanks. I think they gave her that already to determine if she was thal major.

Update:

Doctor showed me the results of all the tests. From them she is assuming that my other daughter may have alpha thal minor. She isn't sure. I told her I will be going to Cornell Medical as well. She was pleased and said she will send our info to them to help her figure it all out.

I set up an appointment for Nov. at Cornell with this top doctor in thalassemia. I am very impressed with all she is involved in regarding thalassemia and insisted I see her.

When my doc called Cornell, they suggested my baby take Folic Acid pills (crushed with milk).
What do you all think about that? Think it will benefit?

Btw...my baby hemeglobin count was 10 this time. Last visit it was 11. I'm praying it doesn't go down so soon.
Her bilirubin was checked cause she still seems to have some jaundice. It was an 8 and doc said it was fine.

Andy Battaglia:
The reason for a second electrophoresis would be to give a more accurate view of the true percentages. This cannot be done at birth, as the percentages change greatly during the first six months.

All thals should take folic acid as it is necessary for the health of red blood cells. The hospital you have chosen is excellent and I am familiar with Dr Giardina and have met her a couple times. She has been gracious enough to answer questions passed on by members of this group when I have encountered her.

The jaundice is fairly common in thals and is related to the breakdown of RBCs. If the doctor gives you any tips on countering jaundice and the yellow appearance the skin takes on, please pass the advice along, as it is a common topic here.

I would also like to see the test results. Is a DNA test planned? If alpha is suspected, a DNA test will prove quite valuable to understanding how the child needs to be treated.

BabyI:
Thanks Andy. I know we discussed the DNA test and will discuss more with Dr. Giardina. I am looking forward to hearing from her and giving us a plan since right now there are so many unknowns. I didnt get any advice for the jaundice so far and will let you know more once I do. Here are the test results:

Baby I:

RBC Count 4.42
Hemaglobin: 12.2 (has since fallen to 10)
MCV: 76.2
Hgb A- 0%
Hgb F- 100%
Hbg A2-0%

I can give more if you need it.

Thanks

Andy Battaglia:
The complete lack of HbA2 does suggest that alpha trait may also be present, along with a beta zero thalassemia. If this is so, the diminished production of alpha production is actually a positive thing, because it means there will be less unmatched alpha globin in the child's blood, so this reduces some of the problems caused by these unmatched alpha chains. Alpha trait is a moderator of beta thal, so carriers of alpha often have a somewhat less severe thal. This can have an affect on things like frequency of transfusion, although is also affected by the quantity (not percentage) of HbF produced. It should be considered a positive thing if alpha is also present.

BabyI:
Thanks Andy. Yes I was reading about that. The doctor didnt really know (or couldnt conclude) that my baby has aplha thal or not, but she did feel my older daughter most likely has the alpha trait. When I was told that, I was hoping my baby had it too for the reasons you suggested (making it less severe and such). But I think once I go to Cornell and talk with Dr. G then hopefully I will get definate answers since my doctor even told me she would welcome the help figuring everything out.

But Do you think that maybe, if my baby has the alpha trait, that it could prolong when she would have to start transfusions? I am hoping it will be delayed as much as possible.

Thanks

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