BMT or blood transfusion

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BMT or blood transfusion
« on: August 26, 2013, 06:29:11 PM »
hello
I m new member. my younger son is 7 yrs. old and he is thalassemia major. He is  on regular blood transfusion and Exjade he is doing well . now they give us option for BMT as  his brother is perfect match . so  we met BMT team and they told us about lots of risks and also that after BMT there is 99% chances that he would be infertile............ we don't know what to do , as for BMT he fall in class 1 and have good chances of success and on other hand with transfusion he is doing well ........ can anybody help us that what are problems if don't go for BMT . plz reply me soon as I don't know what to do?
thanks

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Offline Andy Battaglia

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Re: BMT or blood transfusion
« Reply #1 on: August 27, 2013, 03:30:42 PM »
Some of your questions can be answered at http://www.curethalassemia.org/faq/

You should also be made aware that some doctors are using a low intensity chemo regimen that does not have as many side effects. I would suggest learning more about Dr Krishnamurti at Pittsburgh.
Andy

All we are saying is give thals a chance.

Re: BMT or blood transfusion
« Reply #2 on: August 27, 2013, 05:26:00 PM »
hello Andy
Thank you for reply, actually we are in  Sick kid Hospital Toronto, Canada. We will talk about low intensity chemo regimen. he also has chronic eczema ........so is that dangerous during BMT Also I want to know that doctor only suggest me to give vitamin and calcium ,they never told me about zinc, folic acid or IP6 ..... so can I start them now and what dose . once again thank you so much for your reply
thanks

Re: BMT or blood transfusion
« Reply #3 on: August 28, 2013, 08:05:51 PM »
Sick Kids Toronto is reputable and has a very high success ratio. I strongly believe you are in very good hands. The BMT team is excellent.

However, BMT is risky procedure. Personally if I will be in your situation, I would probably wait for stem cell therapy results conducted by Dr. Michel Sadelin, which are due next year or so, it is promising and less risky compared to BMT. Given your child is young and has lots of years to come. The blood transfusion facilities and the management level of thal major in sick kids Toronto is world class.

The decision is yours.

For stem cell therapy, read all about it in our forum (link provided)

http://www.thalassemiapatientsandfriends.com/index.php/topic,4046.0.html

Regards.

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Offline Rajiv

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Re: BMT or blood transfusion
« Reply #4 on: August 29, 2013, 09:52:21 PM »
Hi Canadian family
I support your suggestion.  Best advice.  When we have time, we should wait.
Its better to wait instead of taking steps that may result in various risky and life threatening
illness.
regards,

Re: BMT or blood transfusion
« Reply #5 on: August 30, 2013, 12:07:23 AM »
hello
 thank you Canadian family and Rajiv for your reply. we are also scared of all the risks. so that's why we just delayed our decision .so can any one tell me about theIP6, zinc and folic acid supplements and their dose also how much wheat grass is ok for him?
thanks again.

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Offline Sharmin

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Re: BMT or blood transfusion
« Reply #6 on: August 30, 2013, 03:26:07 AM »
I second the opinions above.  Gene therapy with reduced intensity conditioning is likely to be a cure for thalassemia in the near future.  BMT can be potentially fatal, it can be extremely difficult for the patient to endure and risks such as GVHD and infertility have discouraged my family from considering it for our young son. 

Thalassemia patients are often deficient in certain essential antioxidants such as vitamin E, C, D as well as zinc.  These vitamins are absolutely necessary for good health and must be replaced through diet and supplements.  Often doctors recommend taking a multivitamin containing 100% of the daily recommended amounts of these vitamins.  There are many studies linking deficiency of these elements to disease.  Zinc for example plays an important role in the functioning of many important systems in the body - including the insulin.  Zinc is therefore related to diabetes. 

Zinc and copper must be given in a balanced ratio of one another.  A multivitamin many be given - be sure to give a multi with no artificial fillers etc.  We give our son RAW for men as it uses raw food sources.  You must also ascertain that the vitamin does not include iron. 

We also give him IP6 inositol, which can be purchased at any health food store in Canada. 

Best of luck, please feel free to ask any other questions that you may have.

Sharmin
Sharmin

 

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