Discussion Forums > Thalassemia Major
regarding my daughter
Shikha Mitra:
Hi
I have raised a Thal child and she is now 30 years old leading a perfect life. If the Hb falls as low as 4.. it CANNOT be thal inter.. at times.. a child might not need transfuison before the age 2 and can grow quite normally with an low Hb.. but def. not 5/4.. sometimes the Hb is 7/8 at that stage and the child can grow well without transfusions. ( as my daughter did.. since she is Thal E), but sooner or later the child's Hb will fall if not taken care and if proper transfusions are not given, growth will be hampered and there will be deformation of the bones, specially the skull and forehead region.
I too did not give BT till age 3 or so.. because those days we were not very knowleagable about Thal.. and soon she started showing bone deformation. Since age 4 has been on regular BT at an interval of 15-20 days.. and since age 6 on regular chelation and now the transfusion is at an interval of 4 weeks.
So please refrain from experimenting with new untested drugs and cause more harm to your children. Please ACCEPT that your child has a problem, and it needs to be attended to with the prevelant and accepted methods of treatment. You might cause more harm by not doing so. And trust me, with proper blood transfusions and iron chelation, the future of your child is as bright as any other kid.
More over even if you want to test a new drug.. the child must be in good health in order to absorb the effect of the drug.. when a new drug is given at an Hb of 4/5.. I have my doubts if the drug will work at all.
So please ACCEPT your child's problem and once that is done, you would have crossed the biggest hurdle.
Just think for a moment, if Dr. Mathurs medicine did work.. would he be not a world famous figure by now???.. someone who can cure genetic problems with some wonder drug would be up for the Nobel Prize...
Also please do refrain from using Homeopathay medicines or any other alternative treatment.. other than the possibility of a bone marrow transplant.....even for that, your child will need to be well transfused to keep the Hb as high as possible and the SF should be very very low.. that means, even for a BMT, the child has to be HEALTHY!
My daughter was born 30 years back, when I did not have so much knowledge of Thal as you have now, and I also did not have access to Desferal or L1 or even Exjade as you have now.. and I did go through this Homeopathy and other alternative treatment etc.. but trust me.. nothing will work.
As for wheatgrass.. well.. anyone can have that.. not a cure.. except one stays well with that generally.
So please do the regular BT with proper chelation, in order to ensure your child's proper growth and survival.. and dont make them the doctor's experiments....I am talking from my experience.. and if some curative treatment does come out ( other trhan the BMT), we will all benefit.. at the moment, please be conventional!
Shikha Mitra
Zaini:
Well said Shikha Mitra :clap
ZAINI.
Kathy11:
HI Shikha Mitra.
It refreshing reading your post.Congratulation :clap
Kathy
Kathy11:
To all Members,
Remember Resillient is our Motto
:flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
I'm looking forward to go on my holidays.
I'm visiting my sister and her family whom I havent seen for eighteen years.
I hope all goes well.
Kathy
Andy Battaglia:
:goodluck Kathy. I hope your visit goes great.
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