Discussion Forums > Thalassemia Major

regarding my daughter

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simran2007:
hi everyone
my daughter is 2 and half year old she was diagnosed thal. when she was 10 months old her hb was 7.8 at that time doctors asked it to be thal. major and some said thal. inter. No B/T was at that time recommended for her than we started some homeopathic medicine and her hb maintained b/w 5 to 7 till she attains the age of 2 years during summers of this year her hb suddenly falls to 4.9 then someone ask us to start ayurvedic medicine.... after giving a treatment of ayurvedic med for 20 days her hb falls to 4 so we were very much wooried then doctors advised us for blood trans so she was transfused first time at the age of 2year4months after that she got another trans after one month that is one in the month of august and second in the month of september we didnt check her hb after trans and doctor recommended to come after one month for another trans Plz advised us we are very much worried PLZ suggest what are the possibilities of my daughter case is she thal major or inter. we are continuing with homeopathic medicine Recently we came to know of Dr. Mathur of Gurgaon is his medicine RODEX working for all Shall we start with that treatment...... we dont want B/T anymore we want her hb to remain stable PLZ suugest us something I would like to know abt Dr. Mulkdass and her therapy I shall be highly thankful to all of u PLZ reply as early as possible

thanks
SIMRAN

maha:
Hello Simran
My 16 month old son is taking Rodex. I don`t know if it is going to cure him or not, but I wasn`t left with many options. We did discuss BMT here in Saudi Arabia as well as in cmc vellore, India. Here the most suitable age for bmt was 2-3 years while in India they said 6-7 years. Your daughter definitely sounds more like an intermedia as she could go without transfusions for more than 2 years. My son has had two B/T so far. Once when he was 12months when his hb was 5.7 and the second time was one month after starting Rodex when his hb was 4.6. Now its almost 3 months of Rodex. He was doing very well. He had gained weight and height. But two weeks back he had an infection because of which he has lost weight and still vomits occasionally but he still seems to be doing ok. His post tranx hb was 6 and I feel it is still probably hovering around the same point.
Regards
MAHA

§ãJ¡Ð ساجد:
Hello Simran,

Even if your daughter is Intermedia, HB of 4-5 is not going to help her grow properly. You will be putting too much stress on her bone marrow and it can deform her soft bones plus she will be absorbing far more Iron from diet that will make her SF levels go up quite fast.

Eventually you will have to keep her on transfusion sooner or later if these herbal medicine don't improve her HB. It is always best to keep the HB levels above 10g/dl. to ensure proper growth.

Wishing you all the best for future.

Canadian_Family:
Simran and Maha,

I concur with Sajid, the HB of 4.7, 5.6 or 6 and so on is not a healthy level to maintain. Of course a thal major child can sustain more than 2 years without transfusion but the stress on his/her bone marrow is imense, the body is under stress and constantly working hard to comensate for the low levels of HB. A child can also survive at these levels but its not good for the long term health and life span of the child.

My opinion is do not satisfy at any HB of less than 8.

Zaini:
Hello Simran,

Welcome to the forum,what i can conclude is that your daughter can be thal intermedia,bcoz thal majors can't live without transfusions for as long as two years,though a DNA test would give you a clear picture,personally i think hb of below 8 is not good for growing age kids,though i would say hb of 10 would be very good, but since intermedias mostly maintain hb between 6 to 8,most probably their body can manage with that low hb,how about your daughter's growth,is she growing as normally as any other kid of her age,any bone deformations? (God Forbid),if not you'll have to monitor her hb on regular basis,i don't know why didn't you check her hb after transfusion,you should have check her hb after first transfusion,and follow that for how long she maintains her hb,now before going for third transfusion plz check her hb,and you can try a medicine called "hydroxyurea". It's meant for inducing feotal hb thus increasing hb level with out any transfusion,we have a member "Manal" on this forum who's son is using Hydroxyurea ,though results are a bit slow but his hb is atleast stable if not increased.
It seems like "RODEX" did work for some of the patients on this forum,you can give it a try also,but think about hydroxyurea also,and PLZ monitor your daughter's hb regularly.She can lead a normal life if you'll right steps at right time.

Take care,

ZAINI.

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