My 14 months old daughter has been diagnosed with Thal....Please help......

Dear All,

I have come to know about one more homeopathic doctor in Kolkata, Dr P. Banerjee.

Below is the link to his website

http://www.drpbanerji.com/thalassemia.htm

I would appreciate if you all can investigate about this doctor. I hope he is not fraud like Dr. Mathur of Gurgaon.

Please help me and others....

Let us all bring light on this....

Dear Dr. Andy,

Please your expert comments on this.

Rgds
Puneet

I have seen mention of testing for alpha trait at the Cooley's Anemia website.

From http://www.thalassemia.org/sections.php?sec=1&tab=8

The trait for alpha thalassemia (or Silent Carrier) is much more difficult to identify and can only be determined by a special DNA test called alpha globin DNA mutation analysis. This test is available at only a few major medical centers in the US. If you suspect that you may have the alpha thalassemia trait and cannot visit one of those centers, your doctor can send your blood sample to one of the special laboratories for DNA testing.

I do not know if you have had this test done yet.

I am very skeptical about Dr Banerji's claims that he can treat almost every disease known to mankind. Not only this, but he can do this by having a patient give a brief description of their ailments in an email. The payment required is the same regardless of the disease, which seems strange considering how different each condition is. Once again I have to ask this question. Where are the patient testimonials from patients who have been cured? Wouldn't Dr Banerji be known worldwide if this worked for thal or any other illness?

Has anyone had any personal experience with this man's remedies?

Update on my daughter's condition

Dear All,

This is with reference to my post in Thal Forum regarding my daughter who is Thal Intermedia and has not been transfused till date. She is 4yrs and 8 month old.

Really worried now as her Hb has fallen to 7.7. Consulted her doctor at Apollo Delhi and she advised it is the right time that we start some treatment for her. Treatment can either be trying hydroxurea (though the chances are only 15% that she will respond to it) or start blood transfusions.

I am little skeptical about start hydroxurea as have heard that there are side effects and also since the chances are only 15%. Can someone please help me with this?

Since her situation is not that bad, i am also thinking to increase the quantity of wheat grass from once a day to twice a day. I can try this for one month and then get her Hb checked again. If it reaches somewhere near 9, I do not think doctor will then ask to start hydrea or transfusions. But this will be purely on my risk. What is is your opinion on this?

Thirdly, I have my son who is 8 months old now (Thal Minor) and i have preserved his stem cells (cord blood). If HLA and other things matches, can i for this this stem cell therapy as well? What are the chances? What is the success rate? Can Thal Intermedia's who have not been transfused go for it?

My daughter is 4yrs 8 months old now and has not been tranfused yet? Enclose is her Hb count for last 3-4 years. By seeing this data, what do you suggest as to what is appropriate for her?

S.No   Date             Hb
1   11-May-07   9.5
2   1-Jun-07   8.8
3   8-Jun-07   8.1
4   23-Jun-07   9
5   21-Jul-07   9.7
6   1-Sep-07   9.6
7   20-Oct-07   10.2
8   21-Dec-07   9.7
9   28-Feb-08   7.8
10   6-Mar-08   9.1
11   1-Jul-08   9.1
12   3-Oct-08   8.9
13   3-Jan-09   8.5
14   29-Jun-09   7.7
15   8-Aug-09   8.2
16   30-Nov-09   7.7
17   1-Jan-10   8.2
18   12-Feb-10   8.3
19   8-May-10   8.5
20   12-Jul-10   8.2
21   4-Dec-10   7.7
22   8-Jan-11   7.7

Hi ps1236,

Where did the 15% estimate come from? I don't think anyone can actually give you a percentage chance on whether or not hydroxyurea will work. One might make an educated guess based on the fetal hemoglobin level of the child, but even there, other factors may work for or against the success of hydroxyurea.

It may be worthwhile to try more wheatgrass, as it is perfectly safe. Folic acid, B complex, magnesium and natural vitamin E may also have some positive effect on the Hb level by helping to produce better quality red blood cells that survive longer. If you do choose to try hydroxyurea, please continue the wheatgrass also, as hydroxyurea has been shown to work in tandem with other Hb inducers. Also, add L-carnitine to the mix if hydroxyurea is started.

And yes, doctors are doing bone marrow transplants on intermedias if severe enough. Recent reports on using cord blood rather than bone marrow or harvested stem cells, show that cord blood transplants can be very successful for curing thalassemia.

Dear Puneet,

Thank you for your update on your daughter. It seems like our daughters have quite similar conditions. It is not easy to be a parent, as we want to do the very best for our child and we are so afraid to do the wrong things.
This is from me to you 

Hello PS,
My son is detected with HbE-Beta thalassemia in Dec2009 when he was 3.5 yrs old. His Hb falls to 6.5 because of infection and he has been transfused 1st time and till then no transfusion and his Hb levels is between 8 and 9.

I went to Apollo Delhi that time and the doctor(she) told me the same thing to go for regular transfusion, but I have seen many site in internet where it is mentioned that regular transfusion is to be considered if hb falls below 7 constantly.
then I meet another doctor in delhi he is ex- AIIMS personal and he recomended Hydrea, and my son is taking hydrea since Feb 2010, till now I have not seen any increase in Hb level but it is constant (8 to 9 ).my son is now 4.5 yrs old.

from your daughter's  Hb record it seem that your daughter is also maintaining hb level of 8 to 9 with out hydrea and if her physical growth is ok without any other complecation then please discuss any other specialist before starting regular tranfusion.

I am from Delhi /gurgaon and currently my son's regular check-up is going on at Paras hospital gurgaon.

Dip,

Even though the Hb level may not change much, the HbF percentage has most likely increased. This can be confirmed through hemoglobin electrophoresis testing. When the HbF production is increased, the more unstable hemoglobin production is reduced, providing a "cleaner" blood and less stress on the spleen, as there are fewer bad red blood cells to filter out. As long as you see a higher percentage of HbF from hydroxyurea use, you know there is a substantial benefit even though the Hb level hasn't showed much movement. A physical evaluation of the patient is also quite helpful. If growth is normal and energy levels are sufficient, then transfusions can be avoided.

is there any way of checking through the DNA testing or something else if the child is an intermedia or major?

Hello Andy,
before starting Hydrea my son's HbF was 23% and HbE+HbA2 was 62%, so after 1year of using hydrea should I go for another Electrophoresis?

last time (December 2009)when I did electrophoresis test from two different lab the reports was like

Lab:1
HbA=Absent
HbE=62.7
HbF=23.7

Lab:2
HbA=8.7%
HbE=62.1%
HbF=24.3%
others=3.3%

Is it HbE-beta zero or HbE-beta+ ?
can it be predicted from above report?

regards,
Dip

Dip, if these two labs tested at the same time, one is wrong about the HbA. If there were no transfusions in the period of approximately 4 months before these tests, then any HbA found would be your son's own HbA and would indicate he is not beta zero. If indeed, the HbA is zero, it would confirm beta zero thalassemia of the one gene. The other gene produces HbE only.
Yes, do get a new electrophoresis as this will show if there has been any changes in the HbF. If hydroxyurea is working, you should see a higher percentage of HbF now.