regarding my daughter

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

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

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.

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.

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.

A Hb that has fallen as low as 4 cannot be considered intermedia. Maintaining an Hb below 7 during the first two years is not sign of intermedia and the sudden drop below 5 is very alarming. I feel the child should have been transfused much earlier as bone changes may have occurred due to insufficient blood causing bone marrow expansion. The child should be on regular transfusions and you have to face the reality of this or your child will suffer skeletal and developmental damage, with eventual damage to the glands and organs.

It is not common for me to be harsh so please take the words seriously. Your child will suffer damage to her health unless you put her on a regular transfusion program. Perhaps you may find some success with Dr Mathur but as long as her Hb is as low as it is, you should have her transfused regularly and as it has been said here, please strive for an Hb of at least 10 to prevent growth problems.

I know having a thal child is never easy to accept but as a parent, you must provide proper treatment, rather than deny that your child is a major. Please accept this and get your child the help she needs. Continued denial will only harm her development.

I know having a thal child is never easy to accept but as a parent, you must provide proper treatment, rather than deny that your child is a major. Please accept this and get your child the help she needs. Continued denial will only harm her development.

Well Said Andy and we completely agree.

Simran and Maha please take serious note of it.

Hi Canadian family
Thanks for your concern. I am definitely not in denial that my son`s a thal major. That is why I have involved a thal speciallist to monitor Hassan as I continue with Rodex. She said she would co-operate with us but if Hassan drops below 5 she will definitely transfuse him. Dr Mathur insists on no transfusions because that is how his medicine works. All I can say about Dr Mathur is he is definitely not a fraud because whatever be the political scenario in India the head of states do not endorse frauds. He has given us a copy of his magazine where leading politicians, governors and cheif ministers of various states have applauded on his dedication to find cures for various deseases and disorders. The concern however is on the growth and development of the child and that is the reason he gives supportive medicine for each symptom. In any case his treatment takes from 6 months to a year depending on individuals. Every treatment has its own risks be it bmt, gene therapy or Rodex.
Regards
MAHA

Hi

My daughter is a Thalassaemia Major. She is now five years old. She undergoes regular blood transfusions since the age of 8 months. Generally, so far she has grown as per normal standards. She is highly active and pretty smart. However, she can't be classified as well chelated as her iron counts are dismal. At this moment we are trying to concentrate on that end.

We are highly interested about Dr. Mathur's treatment or RODEX? Can any one update us regarding that? How to contact him? What are the charges etc.?

If someone could advise us on the possibility of getting any treatment based on other foirm of alternative medicine that could also be of great help.
Sincere regards to all the forum members. May god bless all of us.


We are based in Calcutta, India.

Hi Canadian family
Thanks for your concern. I am definitely not in denial that my son`s a thal major. That is why I have involved a thal speciallist to monitor Hassan as I continue with Rodex. She said she would co-operate with us but if Hassan drops below 5 she will definitely transfuse him. Dr Mathur insists on no transfusions because that is how his medicine works. All I can say about Dr Mathur is he is definitely not a fraud because whatever be the political scenario in India the head of states do not endorse frauds. He has given us a copy of his magazine where leading politicians, governors and cheif ministers of various states have applauded on his dedication to find cures for various deseases and disorders. The concern however is on the growth and development of the child and that is the reason he gives supportive medicine for each symptom. In any case his treatment takes from 6 months to a year depending on individuals. Every treatment has its own risks be it bmt, gene therapy or Rodex.
Regards
MAHA

hi calcutta family
i have Dr. Mathur Phone no. U can contact him on phone he is residing in Gurgaon And u can take an appointment and address by call
Ph. No.:--098110076777

all the best and reply to ur further actiion and abt urs daughter
simran

 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

Well said Shikha Mitra 

ZAINI.

HI Shikha Mitra.
It refreshing reading your post.Congratulation
Kathy

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