Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: simran2007 on September 11, 2007, 09:07:01 AM
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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
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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
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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.
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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.
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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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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.
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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.
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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
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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
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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
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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
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Well said Shikha Mitra :clap
ZAINI.
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HI Shikha Mitra.
It refreshing reading your post.Congratulation :clap
Kathy
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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
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:goodluck Kathy. I hope your visit goes great.
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Thanks Mate,
I'm looking forward for a white X=mas.One of my dream will be fullfill.
:biggrin :
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Hello Kathy :hugfriend
Hope you will enjoy your visit and greetings to your sister
Hope you will be able to be online
Take care
Manal
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Enjoy your time with your family Kathy!
Happy Holidays!
:party
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Thanks Sajid.
Happy birthday to Courtney :bigparty :bigparty :bigparty :bigparty
I hope you are well, we are missing you here.
Kathy
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Hey Kathy,
Enjoy your holidays and have a great time, :hugfriend
ZAINI.
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Thank-you girlfriend.
first and foremost I would make sure i have eighteen years worth of family squables :tantrum :tantrum :tantrum :tantrum :tantrum :tantrum
I know you undestand what I mean ,I missed that part family life :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl Its funny how family behave when they group.
Yes I'm as Mad as a hat.
Hugs and kisses to my darling little Zainad I hope she is doing well and all the best of luck to you
with love from kathy
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Thanks very much for the information. Somehow, I missed your post earlier. I will give a call in that particular no. and find out the modalities.
Among other things we have tried two aspects which were I think partially successful.
- Usage of a herbal medicine called "Ceanothus Americana", a medicine produced out of some American plants, that has helped her to keep the size of the spleen normal (only very slightly enlarged as compared to normal persons). However, parallelly transfusions were on to maintain at least a target pre transfusion Hb level of 8.5 gm/dl
- She has been taking wheatgrass powder for the last two years. That has helped her digestive system. I don't think Wheatgrass could make much impact on her transfusion requirements.
Cheers
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
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My nephew who is almost 2 yrs old has thal major and he has been using Dr.Mathurs medicine for the past 1 yr and his hb levels are ok and it looks like Dr Mathurs medicine is working as of now, but he is claiming that he can cure it for good, which Iam not sure of.
So If i were u , i would go for mathurs treatment
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One more info is , we have ordered Carao fruit extract which the supplier claims to cure all the blood related disease like anemia sick cell as well as Thal Major, no harm in giving a try as it is natural fruit and does not involve any chemicals.He has got some testimonials, i dont know if they are genuine.
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hi all
I agree with andy that fall of HB to such low means that the girl is thalessemic major . because my daughter case is also same . and her heme has told us that if HB falls to such a low level than the chlid is thlessemic major.So i may only say Smran please go for your daughter tranfusion first.
And one more information i wnat to give to you all and speacially to calcutta guys there is one Dr. D R P Banerjee who claims that he can cure thalessmic majors . I am attaching his details
http://www.drpbanerji.com/thalassemia.htm please go through it
rupali
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Hi Rupali
Thanks for the information about Dr. Banerji. I was looking into the site and they have option for consultation through net and more over they can send the medicine by courier.
I would like to ask if somebody in the forum have tried his medicine.
Take Care
Dimple
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hi Dimple, i have emailed this doctor several times and he answered many of my questions, if you are interested i can forward them to you
take care
manal
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Hi Manal
I will be thankful to you if you can foward Dr. Banerji's mail. Did you ever tried his medicines for Ahmed ?
Love
Dimple
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Actually i didn't and i will forward you the mail in a PM
Manal
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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.
please keep me updated if you have contacted Mr. Mathur and about period of treatment and charges etc. because i have contacted Dr. Mathur, he told me that the period of treatment will be 1.5 year and charges will 1.9 Lakh (60,000 to be deposited in advance to start the treatment and balance will be in installment in two months intervals)
Amit Kumar
amit_kr19742001@yahoo.com
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Hi Amit
Dr Mathur also gave us the same time frame. His charges varies according to the blood group. My son`s blood group is A -ve and he charged us 2.8 lakhs. Recently someone contacted us from Dubai. Dr Mathur had also given them a time frame of 1 1/2 years, But the charges were 3.5 lakhs and if the treatment exceeded the given time frame he would charge more.
So far we have completed 8 months of Rodex, and Hassan still needs to be transfused. So I cannot advice you to start Rodex, but Micky will tell you otherwise. It is so uncanny that his MCV and MCH are constantly increasing but it is not reflected on his hb. This time we went in after 9 weeks(64 days) to be exact. His hb was 5.03, his mcv-69.6 and his mch-31.
A question for all. Can the transfused blood last for 64 days? especially when it was nearing expiry.Because my doc said his mcv and mch was high because of the adult blood and had nothing to do with Rodex. I am continuing with Rodex but I will not wait for his hb to drop this low ever again.
Take care
maha
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Hi Maha,
I am a bit upset after reading your post,why are you keeping hassan on such low hb? don't you think it would effect his growth and it can definitely lead to bone deformation,you are a very good mom ,doing everything possible for your kid, but plz think about it.
My personal opinion,when zainab was diagnosed,and she started transfusing,i was always looking for ways to stop transfusions some how,with one way or another, i was always searching for medicines or treatments which can maintain her hb and stop transfusions,it was untill i joined this site, after joining this site i started believing that thalassemia is a manageable disorder, and transfusing a child is not as bad as i used to think,i started looking towards transfusions as a source of happy and healthy life for my daughter,i know continuous transfusions lead to iron overload,but fortunately there are very good chelators available,you just have to be COMPLIANT.Which is what i am trying so hard to do,i am giving zainab IP6 and wheatgrass, but no claimed treatments for my daughter anymore,NO WAY,i've never seen any results,positivie results coming out of them,unless you talk about hbF inducers or transplantation,although they have their side effects too but at least they are known world wide and their authenticity is confirmed.
What do you guys think ?
ZAINI.
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Hi Zaini
Common sense at times does not prevail. When I decided to start Rodex all I could see was my sons hand which was looking like a club(an aftermath of transfusion). There are five doctors in my immediate family( none in homeopathy), and I myself am a university rank holder in business administration. Everyone tried to talk me out of it, but I was adamant. I started reading about homeopathy and how it works.( Infact if I was to sit for a BHMS I would probably pass in flying colours.)I had an answer to all their arguments. I always looked up to Micky. It was like as long as his son is doing well Hassan would also do well. But now I am scared and confused. Its like being caught in two minds. Should I continue or not? I know what all your answers would be so I don`t ask the question.
My paediatrician has directed us to a thal center in Al Khobar. I didn`t even know it existed. I hope Hassan gets good management there.
Regards
MAHA
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Maha,
Please read my post that I wrote for Micky and try to understand some implication of thalassemia.
Don't worry we all sometimes make wrong decisions. Please keep us posted how Hassan is doing after transfusion.
Take care.
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Maha,
It is perfectly understandable that you want to explore every avenue for your child's care. But as of yet, the only cure for majors is bone marrow transplant. These small changes in Hb that fetal hemoglobin inducers provide are not sufficient and even the success of the Algerian study that used hydroxyurea to boost the Hb of majors, resulted in a recommendation that this may be an alternative when regular treatment is prohibitive due to costs, as hydroxyurea is relatively cheap. This is the same thinking Dr Modha has used with his iron chelation formula. It is most likely not sufficient to replace chelation, but for those getting nothing, it can be of some help. However, when proper treatment is available and the parents can afford it, there is no choice but to use it. I do believe that some of these natural cures can supplement medical treatment but none have proven to be replacements.
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Dear Shika Mitra,
could you please let me know your contacts?
As my newborn daughter has been detected with EBeta Thal, I wanted to get in touch with you to know more.
thank you and best regards.
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I have messaged you with Shikha's email address. She has long experience as a parent of an HbE beta thal and her daughter has done quite well. Be patient, as Shikha may not be online regularly.
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Enjoy your visit Kathy!
Thank you for those words of wisdom Shika Mitra.
Sharmin