benefits of ip6

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Offline Pratik

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Re: benefits of ip6
« Reply #60 on: December 03, 2012, 11:48:22 AM »
Hi All,

Can IP6 be given to very young 1-2 years old thal major patients. what is the recommended dose for IP6.

Regards,
Himanshu


I guess I can safely say it's safe to give. In face that would be wonderful as your child will be getting it right from small age and would be as normal as any other child.

I take 2 tablets, but 1 tablet should do. It's in capsule form, so if she finds hard in swallowing, you can open the capsule and give it's powder or mix it with food as well. :)

-P.
« Last Edit: December 04, 2012, 06:20:50 AM by Pratik »
Every child is special.

Re: benefits of ip6
« Reply #61 on: December 04, 2012, 05:24:17 AM »
thx for the useful reply..

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Offline Himanshu Kumar

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Re: benefits of ip6
« Reply #62 on: December 07, 2012, 04:56:56 AM »
I guess I can safely say it's safe to give. In face that would be wonderful as your child will be getting it right from small age and would be as normal as any other child.

I take 2 tablets, but 1 tablet should do. It's in capsule form, so if she finds hard in swallowing, you can open the capsule and give it's powder or mix it with food as well. :)

-P.

Dear Andy,

whats your view on administering IP6 to very young thal patients of the age 1-1 and 1/2 years.

regards,
Himanshu
Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.

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Offline Andy Battaglia

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Re: benefits of ip6
« Reply #63 on: December 07, 2012, 06:30:58 AM »
IP6 is mild. One capsule can be opened and mixed with food or drink and used for small children. Antioxidants are important for thals from birth, even before transfusions and iron loading begin.
Andy

All we are saying is give thals a chance.

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Offline Bostonian_04

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Re: benefits of ip6
« Reply #64 on: December 07, 2012, 05:16:24 PM »
we had given 2 capsules of IP6 mixed with milk to our child when she was 6 monthe or 1 year old. At that time she was not on any chelator but was getting regular Tx. the first thing we had noticed was change in color on her face after few weeks. She seemed much fairer than before. We stopped IP6 after she went on regular chelator.
Quis custodiet ipsos custodes ? - Plato

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Offline Pratik

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Re: benefits of ip6
« Reply #65 on: December 07, 2012, 07:23:58 PM »
we had given 2 capsules of IP6 mixed with milk to our child when she was 6 monthe or 1 year old. At that time she was not on any chelator but was getting regular Tx. the first thing we had noticed was change in color on her face after few weeks. She seemed much fairer than before. We stopped IP6 after she went on regular chelator.
This seems true. I'm starting to notice a little more fairness in me (although I'm fairer but regions such as hands or toes of legs weren't as bright as rest of the body) so it's definitely a good product.

I cannot just stop talking about IP6 to everyone including my parents. I now feel sporty all day long.

-P.
Every child is special.

Re: benefits of ip6
« Reply #66 on: July 23, 2014, 09:38:37 AM »
Dear Andy,

I live in Karachi, Pakistan. My 3 year old son is suffering from a congenital disease diagnosed as Pure Red Cell Aplasia or Diamond Blackfan Anemia (DBA). In this disease the bone marrow is unable to produce red cells. Therefore, he is on regular blood transfusions, administered after every 4 weeks. The blood transfusions result in Iron Overloads and chelation is done by using Asunra. The disease has severely affected the body growth of my son and his weight is restricted to just 10 Kg. for the last almost a year now. After using Asunra for about 8-10 weeks; the SGPT level of Ayan was raised at an alarming rate due to which the chelation therapy was stopped. I was searching for an alternate, more useful and harmless (or less harmful) method of Iron Chelation; I came across with this information that IP6 is a natural iron chelator. I also searched and visited your website/blog and got very much useful information about use of IP6 in thals. I don't know whether IP6 would be as effective as in thals, bout I would definitely try it on my son after consulting with the Physician.
 
I would like to know about the dosage to start with (on body wt. of 10 Kg)  and time (either empty stomach or with meals). I can use it as an iron chelator for my son; even on trial basis to see whether it can work for my son whose only hope to live is through regular blood transfusions and draining out overloaded iron through natural iron chelators like IP6.

I would also like to know about availability of the product in Pakistan or ordering it from Pakistan. I visited most of the sites you mentioned in your blog but in the Shipping Country drop down box on the ordering page of websites doesn't have Pakistan in their list.
 
I will be grateful if a prompt reply to my query is given. It would be better to reply me on my email arifdomki@hotmail.com

You may also post this on your blog for general comments from other members.
 
Thanking you in anticipation.

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Offline Andy Battaglia

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Re: benefits of ip6
« Reply #67 on: July 24, 2014, 01:00:06 AM »
He cannot stop taking chelation drugs. No natural chelator can do enough to eliminate the need for the drugs. IP6 and wheatgrass can both supplement chelation but can not replace it.

What was his dose of Asunra? And what is his Hb level before transfusion?
Andy

All we are saying is give thals a chance.

Re: benefits of ip6
« Reply #68 on: July 24, 2014, 08:13:49 AM »
As suggested by the Physician, Hb level is kept above 7; after every 4 weeks blood is transfused at Hb level of 7.3 or 7.4.

The dosage of Asunra was 2 Tabs. daily on empty stomach. The physician stopped Asunra and all other medication after SGPT level went above 900. It gradually came down to 57 but the physician has not yet asked to restart Asunra even the ferriten level is at 2500.

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Offline Andy Battaglia

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Re: benefits of ip6
« Reply #69 on: July 25, 2014, 06:16:35 PM »
The Hb is being kept much too low and will have a detrimental effect on growth. Hb should not be allowed to drop below 9. Your doctor needs to update his knowledge of the treatment of thalassemia.
Andy

All we are saying is give thals a chance.

Re: benefits of ip6
« Reply #70 on: July 26, 2014, 02:01:40 PM »
As I already mentioned, he is not thalassemia patient. He has been diagnosed with a very rare disease known as Diamond Blackfan Anemia which affects 1 in million children.

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Offline Andy Battaglia

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Re: benefits of ip6
« Reply #71 on: July 26, 2014, 03:55:13 PM »
Why is his Hb kept so low? It will cause poor growth and development.
Andy

All we are saying is give thals a chance.

Re: benefits of ip6
« Reply #72 on: August 01, 2014, 08:01:53 AM »
I don't know; it was doctors advice to keep Hb level above 7. I will ask him to keep Hb level above 8.0 atleast.

In fact, my son was scheduled to go through Bone Marrow Transplantation (BMT). I would like to share my bitter experience of deciding to go for the BMT of my son which is the only cure for such blood disorders as thals and the blood disease my son is suffering from.

BMT procedure was tried twice; once when my son was just 9 months old and the recent attempt was in last month (July 2014). Both attempts went wrong even in the initial stages of BMT. In first attempt the Hickman line was inserted on left side of the chest which was infected due to unknown reasons and after two weeks of insertion of the line it was decided to abort the procedure and Hickman line was removed after two weeks. The second time we went through a very traumatic situation. On the advice of doctor, we took the hard decision to make another attempt for BMT. Before BMT procedure, some blood tests took place. All tests were within their normal limits except SGPT and Ferriten (SGPT = 75 & Ferriten = 2500). There was tendency of SGPT level being raised with medication such as Asunra and Antibiotics. It went above 900 when we were using Asunra and some antibiotics whenever any infection occurred. I am not a doctor, even as a layman I had some apprehensions which I shared with the doctor. I asked doctor as the intense medication in the form of chemotherapy and other heavy doses of medication, which will be used in the BMT procedure, may cause liver problem. I told him that the SGPT level will certainly be raised with such intensive medication for a long time. But the doctor suggested to go with BMT, he told me that they will cope with the situation if such a scenario arises. I thought there might be some solution available with the doctors to keep SGPT level down during the BMT procedure. As soon as the initial protocol for BMT procedure started, the SGPT level went above 100. It reached 117 and the procedure was immediately stopped. The SGPT was monitored for few more days but it did not came down the level of 100. The doctor called me to meet him in his office. When I met him, he informed me about the problem and told me that under prevailing circumstances, if we go ahead with BMT procedure, there is possibility of developing VOD disease in which liver failure may occur and there are 75% chances that we may loose the child. I asked the doctor that you were aware of the fact that there are higher chances of rising level of SGPT while using intensive doses of chemotherapy etc. But the doctor had no answer to my questions.

After going through another failed attempt of BMT, the procedure was aborted after 12 days of admission at the hospital. I don't know why doctors don't care about the sentiments of parents who are already going through a very difficult situations to handle children who are suffering from life threatening diseases.

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Offline Andy Battaglia

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Re: benefits of ip6
« Reply #73 on: August 01, 2014, 04:57:13 PM »
I'm sorry to hear about your child's bad experience with BMT. There are many problems that can arise, and it isn't for every child. Parents should always be made fully aware of all courses of action, including sticking with a good transfusion/chelation program, which for the majority, is the right thing to do. Can you tell me where the BMT's took place?

I do think the Hb should be kept at least above 9 to ensure proper growth and development. It is not doing a child any favor keeping it below that level. Chelation can remove the iron, so the positives of higher Hb far outweigh the negative of iron absorption.

Andy

All we are saying is give thals a chance.

Re: benefits of ip6
« Reply #74 on: August 02, 2014, 09:25:41 AM »
The BMT has been taking place at Karachi, Pakistan. There are very few BMT facilities available in Pakistan and the hospital at which my child's BMT was taking place is one of the old hospitals providing BMT facility with most experienced team of Hematologists. More than 500 BMT procedures have so far taken place at this hospital with success percentage of 70 to 80%. Majority of patients treated at the hospital are thalessemia patients.

I will follow your suggestion to maintain Hb level of my child at optimum level.

Best regards.

 

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