Discussion Forums > Thalassemia Major

Kind of Thalassemia

(1/2) > >>

Budi:
ello, my name is Budi, I am new to this site and I am from Indonesia. My adopted son is now 2 years, 2 months  old, weighs 12.5 kg  and he was adopted since he was 1 day old. At the age of 1 year old due to fever illness, he got his blood test and found that his hgb was 7.5 at the time of his illness. Suspecting a thal, a month later, he got his screening test, a completed blood test, and the result was his hgb was 8.6 and diagnosed b thal trait/minor as a lab test conclusion. During at the age of 1 year old and 2 years old, we consider him as  b thal minor as the blood test's result so that we didn't give him specific treatment as thal patients, on the other hand we only gave him soman1, Indonesian herbal and sometimes multivit  in addition to his daily intakes. But in this period, we still had feeling that he suffers from more than thal minor.  During this period he looked pale but we didn't actually notice this because of his white/yellow skin (or is it jaundice?) and his lips, palm and sole were so whiter pale as well..2 days after his 2nd birthday, he got fever for 3 days and we brought him to the doctor and got blood test, his hgb was 6.8 and doctor suggested us to get transfusion of 2 bags RPC. After being transfused, he was so very different in daily activity, he was so active, unlike pre tx, and he looked so red in skin, lips, palm and sole..Now, while after 2 months from the date of  tx, he remains just like the first day after tx and his palm and sole are still red color, but we haven't yet taken him to see the doc or gotten blood test. Now he has been daily taking folic acid and vit e as prescribed by the doc, and vit b complex, gamat jelly (cucumber sea extract) and oxygenated drinking water. A friend of mine saw this kind of water could bring his son tx period more longer, from 2 times a month previously to 3 times a year. Sorry for long story, my question is, I wonder, what type of thal does my son suffer from? As lab test said that he is thal minor but obviously in fact he needed transfusion later on. Really appreciate and thank you for your help and explanation.

Andy Battaglia:
If you can provide the results of a complete blood count (CBC) and a hemoglobin electrophoresis test, I may be able to tell if the child is minor or intermedia.

Budi:
Hi Andy, thank you for your prompt response. Here is his blood test data which was done about a year ago. He hasn't yet done complete hematology test currently.

Hgb 8.6   (normal 10.7-13.1)
Leukocit 13.7   (normal 6.0-17.5)
Eritrocit 3.86   (normal 3.6-5.2)
Trombocit 264   (normal 217-497)
LED 11   (normal 0-11)

MCV 66.6   (normal 74-102)
MMCH 22.3   (normal 23-31)
MCHC 33.5   (normal 28-34)

Basofil 0   (normal 0-1)
Eosinofil 6 (normal 2-4)
Neutrofil 0  (normal 3-5)
Neutrofil segment 35 (normal 50-70)
Limfocit 53   (normal 25-40)
Monocit 6  (normal 2-8)

Fe 235   (normal 65-175)
TIBC 273  (normal 250-450)

HPLC   
HBA2 2.2   (normal 2.0-2.8)
HBF >40.0  (normal <=2)
HBH Inclusion   none

Graph provided : F 97.7% A2 2.2%

P1 0.3
F 97.7
Ao 4.3
A2 2.2

Conclusion : From the index and eritrocyt morfology, HPLC (Beta Thalassemia Short Program), HBH Inclusion can be described Beta Thal Minor/Trait. Anemia micrositic hypochrom leucocytocis
Suggestion : Screening other member of family and relates

I really hope to have a conclusion and suggestion for my son with the above description, really appreciate for any responses.

Warm regards,
Budi

Andy Battaglia:
Hi Budi,

A fetal hemoglobin level of 40% would be an indication of thalassemia intermedia.
--- Quote ---HBF >40.0  (normal <=2)
--- End quote ---
The drop in Hb to below 7 also confirms intermedia. He is young, so it is difficult to predict the course his thalassemia will take. Please continue the program you have him on with herbs and supplements, as they do appear to be making a noticeable difference. Because his HbF is already high, it is likely that this can be affected in a positive direction and probably already is from the herbs and supplements. As an intermedia gets older, it becomes more likely that transfusion will be necessary, but if a stable Hb can be maintained, and growth is not impaired, while energy levels are adequate, transfusions may be seldom or avoided completely. There is a new drug on the horizon that will significantly boost Hb levels and will provide transfusion independence for most thal intermedias. I expect to see this drug on the market within 5 years. With the hope of boosting Hb 3-4 points, life will be very different for intermedia patients, who now choose between poor quality of life and transfusions. 

Monitor your child and recognize when transfusions are necessary. A check of his Hb will confirm if he needs blood. If you are using a program that helps him, keep him on it and don't let anyone tell you it won't help. There are many HbF inducers in the plant kingdom, and some herbs do seem to have this property. Wheatgrass and resveratrol are most often mentioned, but I am certain other plants can have similar and possibly stronger effects.

Have the parents both been tested for thalassemia trait?

Budi:
Hi Andy,

Many thanks for your advice, as I see now more clearly that my son is not like thal traits in his behaviour before his blood taking. Beside, his heart beat before blood taking was quite fast and takikardia. while growth is not a problem as his weight and height is within a range of his age, menatl development is good. One thing he cannot afford is his energy level which is not like a healthy child, he seems to be motionless and fussy and sloppy. But ater blood taking he becomes so greatly active.

I will continue to have him on herbs and supplements as these can be maintained his Hgb level more longer. In Additiom, i will also give him wheat grass. Regarding new drug to boost Hgb level, we really hope to be realized and marketed in the shrotcoming period.

His biological parents have not yet been tested for thalassemia trait. My son is the youngest child as they have 3 other children on their own care and nurture. Their 3 children are not likely suffering from thallassemia intermedia as my sight, probably thal trait. But they look like to be less energy/not so active and age 14, 17 and 20 yo. As they have never been tested (complete blood test) due to financial matter, including their parents, i assume the children probably have thal trait and intermedia (can survive without transfusion).

Best Regards,
Budi

Navigation

[0] Message Index

[#] Next page