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situation changes for me...

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Offline kabir_love

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situation changes for me...
« on: December 28, 2007, 07:47:26 AM »

hey everyone, now its been more than 12 months. exactly about 15 months now. till all this time   first  1-4 months  not good i can say as  hb from 7.5 droped to 6.3 but then stable...5-8 months  okk  as hb  was stable and show little up to 6.6 something.. then 8-10 were stasifactory as hb raised to 7.5.....  mathur promised after 8 months hb will be 8 above. but never went still we are happy.. then mathur said to do the 8 months course again.. so we started again like before.. now its been 6 months and i can say physical condition, weight, color, activity totaly as a normal boy, so we thanks to him atleast we dont have to see the nightmare of  blood transfion  ever...  and now we dont even do the hb test fro my son for 4 months. no need also as i can see by his condition if hb went below and thanks to god i had not seen that after the 6 months of course..

but there is always a fear inside that awakes us in the night many times. so again i really pray to god best for every1  including me.

regs
micky
« Last Edit: March 14, 2008, 11:48:41 AM by kabir_love »
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Offline Zaini

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Re: more than a year on rodex.. hb stable
« Reply #1 on: December 28, 2007, 01:10:21 PM »
Congrats Mickey  :thumbsup

Though i would recommend a regular hb test,just to be on the safe side.

ZAINI.
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Offline §ãJ¡Ð ساجد

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Re: more than a year on rodex.. hb stable
« Reply #2 on: December 29, 2007, 09:11:15 AM »
Please Micky be very careful. Always get his Hb checked regularly.

Wishing you all the best.
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Offline kabir_love

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Re: more than a year on rodex.. hb stable
« Reply #3 on: January 07, 2008, 10:53:13 AM »
ya hb is very much in between 7 - 7.7  as per last test. also now mathur told to do another test related to bone marrow function in the body, as i consult with my  cousin brother who is a child specialist and he said if this test some good report then it means bone marrow is starting doing its work in the body.

so will do the test in  march as doc said. lets hope for the best.

regs
miky
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Offline Danielle

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Re: more than a year on rodex.. hb stable
« Reply #4 on: January 14, 2008, 03:47:58 PM »
That's great, Micky!  I would also recommend shorter intervals between hgb checks, though.  Just to be on the safe side, as the others have said.  Best of luck to you guys.  My prayers are with you. :hugfriend
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Offline kabir_love

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Re: more than a year on rodex.. hb stable
« Reply #5 on: February 14, 2008, 10:53:39 AM »
Quote from: kabir_love on December 28, 2007, 07:47:26 AM

14-feb-2008  today hb report is 7.0,   ((10-jan-2008- hb report- 7.0))...    today also i had done all test for counts and many other what my peditrition told me to do the complete checkup...  reports ill post here on monday(18-2-8). 

i hope dr. mathur had done something that hb is stable and i hope rest things are working well  atleast this is avoiding BT.  also i had consulted  here DR. GETA SHEROFF she had done good research on stemp cells.. so we visited her and after these reports that she said we can undergo her therepay aswell, as she said she will inject stempcell she had ready in her laboratory , for which she said will be no side effects if body reacts with her stemp cell then the missing blood chain will be formed and she is hoping that my son is 2 year and after somtime the chain will be permanent. as per her there is no side effect and we can go together with hemopathic treatment. so i hope if dr. mathur has no prblme aswell then we will go under this treatment next week.


   
regs
micky
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Offline §ãJ¡Ð ساجد

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Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #6 on: February 14, 2008, 11:25:29 AM »
Hi Micky,

Stem cells are not like medicine. You just can't cook them up in a lab and inject to anyone! They have to be harvested from other donors. Like all cells there is a compatibility issue. These cells can react against the patient in form of Graft Vs. Host Disease which is one of the main concerns with BMT.

Please don't put your child's life at a risk for the sake of someones experiment. Make sure that they are correctly matched with all criteria for stem cell matching like HLA.
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Offline Canadian_Family

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Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #7 on: February 14, 2008, 06:03:26 PM »
Micky,

We just can't be sure of Dr. Mathur's treatment at this time, there are so many if's but looking at your dedication you can decide to continue. However, given your meeting with Dr. Geta Sherrof and her treatment option I think you are entering dangerous waters. Please listen to Sajid and keep us posted.
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Offline Hope

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Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #8 on: February 14, 2008, 06:34:20 PM »
What is this stem cell therapy? is it a type of Bone marrow transplant? I have never heard of it.

and Who is Dr. Mathur. I have never heard that Homeopathy can be used for Thal treatment. We use homeopathy for cold and cough and minor cuts. Is he genuine?

Mickey, Please do not use your precious child for someone else's experiment. I pray that your son remain healthy. I can totally understand your desperation to try any claims to cure your son. But, please be very careful. Correct and proven treatment in early years of a child's life is very important for their proper growth and development. so, please be very careful.
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Offline Andy Battaglia

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Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #9 on: February 14, 2008, 06:50:41 PM »
For those wishing to research this, the correct spelling of the doctor's name is Geeta Shroff, of Nu-Tech Mediworld.

DR. GEETA SHROFF

Email: geetashroff@hotmail.com
Mobile Telephone: +91-9810061275
Dialing from the United States: 011-91-9810061275

Partnering Physician and Anesthesiologist: Dr. Ashish Verma
Mobile Telephone for Dr. Ashish Verma: +91-9810156915

Nu Tech Mediworld (New Hospital)
Nursing Home
H-8, Green Park Extension
New Delhi – 110016

Telephone for Green Park Hospital: 64612855

Address for Original Hospital in Gautam Nagar:
Nu Tech Mediworld
487 – Hardev Puri
Near Father Agnel School
Gautam Nagar
New Delhi – 110049

Telephone for Gautam Nagar Nu Tech Mediworld:
Reception (Vandana is the receptionist)
26560089
26565548

http://amandaboxtel.wordpress.com/about-dr-shroff/

Dr Shroff has made many controversial claims and has presented over 100 cases where she claims her therapy has helped many different ills, including spinal injuries. If anyone has more info, please provide.
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Andy

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Offline kabir_love

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Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #10 on: February 15, 2008, 10:04:21 AM »
thankx sajid.
 well wht you said , dr. geeta shroff said same only   as she said like blood group should be matched and its same she said she has much of the stemp cell in her lab  from many donors.  rest as she didnt explain much as she said she need all reports before dicussing furthur so we will meet her on monday i think after getting all reports.

well im not taking her treatment like that only. i will see some of her work on other patients first and report then ill decide. also may be once we show her reports then we will do the matching.

but still is there any side effect after matching??  as per her statment  if body adapts them then its good otherwise they would simply be a normal waist and flush away.

rest too much confused myself ...

regs
micky
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Offline kabir_love

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Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #11 on: February 15, 2008, 11:29:52 AM »
please suggest.. like after HLA MATCHING   for stemp cells. then should i undergo this  geeta sheroff treatment. giving stemp cell daily by injection to my son intially phase1 for 3 months to see the effect.. if ok then phase 2 and phase3 for  3 months each...    is there side effects and safe
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Offline Zaini

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Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #12 on: February 16, 2008, 06:32:22 AM »
I haven't ever heard of STEM CELL THERAPY,i know what is STEM CELL TRANSPLANT,but i think it's done after giving chemo first to the patient and then matched donor's stem cells are entered into the body so they start making new and non defective RBCS. and as far as i know that's a complicated procedure also including the risk of GVHD as in BMT.So i am not sure if this therapy is genuine.

ZAINI.

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Offline kabir_love

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Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #13 on: February 29, 2008, 10:44:42 AM »
hey every1,
 my son had a fever and we really suffer a lot when this does as it really kills the growth of my son as his hb is also not much. well now after 2 days finally fever is gone. but now he is little week, little spleen was enlarged but now seems ok. dr mathur has changed the medican. rodex and give us the new rodex now to start the course

its really long time dr. said thing will be ok in 1 yr but now it seems it will go for another year but all this time atleast other things were stable hb is 7.0 for all this time , i had done all the test of my son and reports were not good. i mean  hbf is same as before 89.9% till today. rest lever and other blood reports were ok. wbc count ok,  rbc  little less then normal should be.

but anyway we will do the test again after 15 days from another lab. to reconfirm this all.

and rest all i hope is good.
micky
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Offline kabir_love

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Re: hb stable- IS THERE ANY PROBLEM FOR STEM CELL THEREPAY?
« Reply #14 on: March 04, 2008, 10:55:27 AM »
bad news. my son had fever and we tried to avoid them so we gave me crocin medican from day 1 of fever and in 3 fever though he was fine but doctor said that fever remains inside and thus gave too much weakness to my son and  he cant walk also so we checked his hb and is was 5.9, we were really soo worred and nothing we could think of. but as this happened before also last year but my son recoverd in 7 days to normal that time we didnt checked the hb. so this time we are watching very closely to him as dr. mathur said he will definately recover in 7 days otherwise we can take blood transfusion.  im soo worried i never wanted BT ever for my child and look for alternative way. now im going to hosiptal for  HLA typing to match my son if with any one in my family as i really will go for BMT  then.

im so depressed.

micky
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