Vitamin and Mineral Supplementation in Thalassemia

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Offline §ãJ¡Ð ساجد

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #15 on: September 14, 2007, 05:05:43 AM »
Hi Zaini,

At JSF they always give Zinc Sulphate syrup to the patients on Ferrinill. See if that helps. Also you might want to try that Fizzy Calcium + Vitamin C soluble tablets. Kids love it. (I know I did when I was a kid :) ) Sorry I don't know the brand names but your chemist will help you out on that.
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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #16 on: September 14, 2007, 05:20:54 AM »
Hi Zaini,

I want to really stress this point, as at times I assume everyone knows this. Thals should NOT take vitamin C supplements, except when taking desferal and only 100-250 mg taken along with the start of the desferal. Vitamin C aids in the absorption of iron from food and should be avoided by anyone with iron overload. Citrus should only be eaten between meals so that the vitamin C in it does not increase the absorption of iron from the diet. 500 mg is far more than a thal should get daily.

I don't know if you'll find any multi vitamin that does not have vitamin C in it. I know recently we had some discussion about a specific children's brand that had only a small amount of C in it. One brand is called Yummi Bears. It has 30 mg of C and no iron. Try to find something like this for a good variety of vitamins with some minerals. You can see the label at

http://www.yummibears.com/modules.php?op=modload&name=Sections&file=index&req=viewarticle&artid=1&page=1

An example of an easy to take liquid calcium supplement can be seen at

http://www.iherb.com/productdetails.aspx?c=1&pid=7657

It has the basics; calcium, magnesium and vitamin D.

I am not promoting any specific supplements but am only giving examples of appropriate supplements for thals. Safe and effective products that are appropriate for thals are on the market but sometimes you have to hunt around a bit.

The pain below the ankles is not related to IP6. Very little mineral chelation takes place with IP6. The body uses it where needed and it has been found that IP6 works to inhibit the action of iron that damages cells and also promotes cancer cell growth. There is much interest in IP6 as a potential weapon against cancer. Unfortunately there is something else that is well known for causing joint pain in patients. Ferriprox (L1, Kelfer, deferiprone etc.) is well known for causing joint pain in some thals. This is usually tolerated and the patients continue using the drug. Some patients find using a reduced dose of ferriprox and also using desferal 2-3 times a week keeps their ferritin in check. If you can resume getting desferal it is highly recommended that you use it. The desferal/L1 combination is considered to be the most effective chelation method.
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #17 on: September 15, 2007, 08:39:35 PM »
Hi Sajid,

I'll search for that zinc sulphate syrup in the market,and ABOCAL is the same fizzy calcium+vitamin c+d+b6 water soluble tablet you are talking about,but now i am worried that it's supplying about 250 mg of vitamin c,( zainab is taking half tablet daily) and as Andy very rightly said that thals should not be taking that much vitamin c ( ignorance on my part,MY GOD ,but sometimes it's hard to keep track of everything),so i think i'll be quitting it and go search for another calcium supplement with vitamin D.

Andy,thanx for such a detailed reply,we were able to find desferal atlast on very high rate, so i'll be resuming the therapy,i'll quit ABOCAL and search for another calcium supplement,but i think i'll continue VIDAYLIN,as it contains only 50 mg of vitamin C, I don't think yummy bears brand will be available here, i'll search for any alternative,thanx again for this "eye opening" reply  :wink.

ZAINI.
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Offline Ash

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #18 on: September 16, 2007, 04:09:03 PM »
Let me remind everyone that if you are taking Deferiprone/Kelfer/L1 then you should consult your doctor for mineral supplements. Most common causes of joint pains in India have been due to mineral deficiency caused by taking L1.

All thals who took the supplements then did not report joint pains again.

Take care
Ash


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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #19 on: September 16, 2007, 10:46:24 PM »
Hi Zaini,

I talked to one of our resident experts (Ashish) on the subject of L1 and he said if you want to know if it's the drug causing the pain, just have her stop taking it for 10-12 days and see if the pain clears up. If it does, please follow his advice and make sure that you are replacing the minerals lost in chelation, especially calcium, zinc and magnesium. If the pain does not clear, then it is most likely not chelation related. It may not even be thal related.
Andy

All we are saying is give thals a chance.

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #20 on: September 17, 2007, 12:32:30 PM »
Hi Zaini,

I noticed you are trying to determine what kind of vitamin is best for Zainab. We use Kindervital which is derived from natural sources and is iron free and source of Calcium and vitamin D. The contents have very minimum vitamin C only to aid in absorption of calcium and vitamin D. This product is specially designed with children in mind and geared towards better bone health and improved immune system. I am providing the link below for you.

http://www.florahealth.com/flora/home/canada/products/r4780.asp
Regards.

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Offline Zaini

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #21 on: September 17, 2007, 06:45:00 PM »
Thanx Andy ,

For your concern,i've noticed a weird thing though, when i read that post of yours about Vitamin C and came to know that i was overdosing it,i stopped Abocal right away,it's been two days i'd stopped it and in these last two days she hasn't complained of pain in her heels,i don't know if it's related because calcium and vitamin D are supposed to help bones,may be i am jumping to conclusions too early,but this is what i've noticed.I am in search of another calcium supplement with vitamin D.

Hi Canadian Family,

Thanx for the information,right now i am searching for any brand that is locally available,i am trying to reach my cousin who is a family medicine resident,but i think she is a bit busy right now,i hope i'll be able to catch her in a day or two.

Thanx Again,

ZAINI.
^*^Xaini^*^

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #22 on: September 17, 2007, 06:59:38 PM »
As I mentioned in my last post, it is very possible the heel pain is not related to any of this. Might possibly be a minor injury that has healed now.
Andy

All we are saying is give thals a chance.

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Offline maha

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #23 on: April 20, 2008, 06:33:39 AM »
Hi Andy
Hassan`s doc had prescribed mixavit. Since his dose was 2.5ml there was exactly 25mg of vit-c, it had more of B- vitamins. But she asked me to give it for a month and then stop for a month and continue henceforth. It is 10 days since I have stopped it and Hassan has not been eating well for the past week. I keep wondering if I should start giving him his multivitamins again or follow the doc`s order.
maha

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Offline Sharmin

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #24 on: May 13, 2008, 11:31:05 PM »
I have just received wheatgrass in the mail.  I am eager to begin using it! 
Sharmin

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Offline Manal

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #25 on: May 14, 2008, 12:00:59 AM »
Congratulations Sharmin, I did too and began using it on May 1st , 2008. Hope that our little angles will benefit from it

manal

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Offline nice friend

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #26 on: May 14, 2008, 05:15:05 AM »
Hi zaini :
i m on ferriprox tablet and my doctor  sugested these medicines:
 Ferriprox        500 mg tab
 Zincat           60ml dry suspension  ( Elemental Zinc sulphate monohydrate U.S.P )........... 10 mg
 D-Calc           

 i hope it will help u ........... best regards for Zaini                          oh yes  its just an information for zinc suplement from me please dont forget to ask abt it to Zaini's Doctor   
                                                                                                           From
                                                                                                           umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #27 on: May 31, 2008, 02:09:34 PM »
Thank you Andy.. this information is helpful.  What are your thoughts of the B12 injections.  I have read that most oral B12 supplements do not absorb well and we only retain small amounts of it.  I have asked my physician about them and she wants to check my B12 levels first.    Also, my serum ferritan level was at 7( normal being 40-60) and my physician wants to put me on iron therapy for a month and then recheck. Even though I am Thal. Minor she said I need it but she is aware that it can not be long term.  What are your thoughts on that.

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #28 on: May 31, 2008, 04:49:12 PM »
Some people do need B-12 injections, if they suffer from pernicious anemia, in which the intestinal tract does not adequately absorb B-12. If you have this problem it will be discovered by the B-12 test. B-12 can also be found in sublingual tablets that one holds under the tongue until dissolved. The B-12 reaches the bloodstream through the veins under the tongue. This is a more efficient way to deliver the B-12 to the body than swallowing vitamin tabllets but not as efficient as the shots.

Thal minors can also have iron deficiency, just as anyone else can. If you are iron deficient it is coincidental to the thal and should be treated. A serum iron level of 7 is very low and should be addressed. Short term iron therapy may be all that is needed. If no improvement is made after one moth, a complete iron studies panel of tests should be run to confirm the iron deficiency.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #29 on: May 31, 2008, 06:40:40 PM »
Andy I am considering Kindervital for my son - as per Canadian Family's post - and the link provided.  I am also giving him vit e and folic acid and vit e, wheat grass and IP6.  I am currently giving him cal mag which is probably geared toward adults - perhaps it would be best to switch him to the kindervital. 
Sharmin

 

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