Multivitamins for thal major children

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Offline Sharmin

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Multivitamins for thal major children
« on: December 05, 2008, 04:10:41 AM »
Andy,

I am giving progressive multiple mineral and vitamin formula to both of my children (thal major child and nonthal child). 
Is this a good multivitamin for my thal son? 

http://www.progressivenutritional.com/multikids/research.htm (Please click on ingredients to view)

I am also giving him the seperate doses of vitamin e, vitamin c (250mg), cal/mag/vitamin D/zinc (Osteocare), carao, wheat grass (Just restarted), and omega 3-6-9

Thanks,

Sharmin
Sharmin

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Offline Andy Battaglia

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Re: Multivitamins for thal major children
« Reply #1 on: December 05, 2008, 04:34:20 AM »
Hi Sharmin. That is a really good multivitamin and it has no artificial additives. My only suggestion is to adjust the supplemental vitamin C so little A doesn't take more than 250 mg daily. As a note, black pepper extract aids in absorption of the other ingredients.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Multivitamins for thal major children
« Reply #2 on: December 05, 2008, 04:38:30 AM »
Thanks Andy  :hugfriend

I will adjust his vitamin C :)

That is interesting to know, about the black pepper abstract.  My grandparents often told us to take fresh ground black pepper when we were not feeling well. 

Sharmin
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Offline nice friend

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Re: Multivitamins for thal major children
« Reply #3 on: December 05, 2008, 12:42:34 PM »
Hi Andy ,
please correct me ,
Quote
My only suggestion is to adjust the supplemental vitamin C so little A doesn't take more than 250 mg daily


Quote
Patients with iron over load usualy become  Vit-C deffifient , probably because of iron oxidises th vitamin. [bgcolor=#ffff00]As aa adjuvant to chelation therapy, vitamin-c in doses upto 200mg daily may be given in divided [/bgcolor] doses, starting after an intial month of regular treatment with desferal ( see special warning and precautions for use ). Vitamin-c increases the availbility of iron for chelation. [bgcolor=#ffff00]In general 50mg suffices for children  under 10 years of age and 100mg for older children.Larger doses of vitamin-c fail to produce any additional increase in excretion of the iron complex [/bgcolor] .

Please Shed some light on it .... i quoted this piece of information to that Desferal's Leaflet that is issued by the compay ( Novartis ) for the product Desferal  ..

International  Package Leaflet
Information issued: September 2005

® = Registered Trademark

Novartis Pharma AG, Basel, Switzerland
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

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Offline Andy Battaglia

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Re: Multivitamins for thal major children
« Reply #4 on: December 05, 2008, 03:10:12 PM »
Umair,

You should highlight the first part of that quote for your answer.

Quote
Patients with iron over load usually become  Vit-C deficient , probably because of iron oxidizes the vitamin.

Thals need vitamin C because they are seriously deficient. 250 mg is considered a safe dose, so this is recommended. As a bonus, C aids in freeing iron for chelation, but it is not the only reason to take vitamin C, which is the single most important vitamin in my opinion.
Andy

All we are saying is give thals a chance.

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Offline nice friend

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Re: Multivitamins for thal major children
« Reply #5 on: December 05, 2008, 07:39:02 PM »
Thanx Andy ,
i was confused abt the dosage and administration of vit-c , but its clear now that if i have started chelation regularly then  its safe to take 250mg of vit-c ... after its a long time to  when  i started chelation with pum  today i gave my tummy a littlee rest and i m having desferal IV , soo i took 250mg of vit-c after 1 hour to starting time of chelation.... thanx buddy. ..


Take Care
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

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Offline Dori

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Re: Multivitamins for thal major children
« Reply #6 on: December 05, 2008, 07:56:21 PM »
Ehhhhh ??? Oh help! I thought we weren't allowed to take vitc. I thought that for 2 years, untill i came here. But deficient in vit. C?
I think i start to do research in my holidays. I need to take more vit. So you will have homework during the holidays;)

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Offline Sharmin

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Re: Multivitamins for thal major children
« Reply #7 on: December 06, 2008, 04:14:56 PM »
Dear Dore,

The facts about vitamin C in thalassemia major are as follows,

There is often significant vitamin C deficiency in thalassemia major.  Vitamin C is necessary for among reasons, the immune system, the circulatory system (healing bruising), bone health, and health of the skin. 

There are two problems with taking vitamin C in thalassemia - therefore vitamin C doses must be timed very well. 
1) Vitamin C increases iron absorption in the gut - therefore it should not be taken with meals (especially meals high in iron)
2) Vitamin C causes iron to be expelled from the liver - therefore free iron is available to damage other organs - therefore vitamin C is best taken 1/2 hour after the beginning of desferal infusion. 

If vitamin C is taken 1/2 hour after starting desferal then it can be helpful - because desferal cannot enter organs to remove iron - so if vitamin C can release iron from the liver desferal has more iron to bind and remove from the body.  My 29kg son takes 250mg of vitamin C after beginning desferal infusion.    This serves two purposes for him, it helps chelate more iron and it restores the vitamin C in his body to counteract vitamin C deficiency. 

Dore, I know that you are not able to tolerate desferal - we are currently trying to determine whether it is okay to take a dose of vitamin C with exjade - because the mechanism by which exjade chelates is different than desferal.  We don't know if exjade would mop up the iron released into the blood stream as efficiently as desferal does.   

Remember, by storing most of the iron (to a certain level) the liver protects the other organs from iron damage - therefore we don't want to release stores of iron from the liver without having anything to quickly remove this iron from the body.  Perhaps in your case (we don't have enough information at this time) - tiny doses of vitamin C can be taken between meals because vitamin c is quickly metabolized and removed from the body it should not cause any cumulative issues. 

Andy is the expert on vitamin C - perhaps he can shed some more light on this :)

I hope this helps Dore :)

Sharmin
Sharmin

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Offline Dori

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Re: Multivitamins for thal major children
« Reply #8 on: December 06, 2008, 05:33:59 PM »
Thank, your information does help.

Today I had write my memo for property law, but I also was searching on pubmed. Accidentically, I found the article what goes about me. It's funny to read it. Now I know more about my own enzyme defect.
Quote
In a 2-yr old girl a hemolytic anemia was present since birth requiring multiple blood transfusions

http://www.ncbi.nlm.nih.gov/pubmed/2220762?ordinalpos=346&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
(it's a pity that there's only this)

Also a dutch person has written a thesis about pk def. We got his thesis, but I never read it. I think my father did. I am looking for it. Don't worry I know that there's a possiblitlity that I won't pass page 3 :wink

Once again: Muchas gracias  :smileblue




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Offline sahil

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Re: Multivitamins for thal major children
« Reply #9 on: December 06, 2008, 06:00:20 PM »
Hello,

I started with Centrum Silver a month back. One tablet daily. Is that cool enough or I need something more?



\peace/
My formula for living is quite simple. I get up in the morning and I go to bed at night. In between, I occupy myself as best I can.

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Offline Andy Battaglia

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Re: Multivitamins for thal major children
« Reply #10 on: December 06, 2008, 07:49:08 PM »
What Sharmin has said is correct. Vitamin C should be taken between meals, so that it doesn't cause added iron to be absorbed from foods. (However, the effect of C in this process is now in question and apparently, vitamin C does not necessarily cause excess C absorption, but to be safe for now, do take it between meals). It has been believed that citrus fruits should be taken between meals as to minimize iron absorption.

Of course, this all flies in the face of reality because vitamin C is the single most important vitamin and we know that thalassemics are almost universally deficient in vitamin C. High doses when used with desferal are thought to be unsafe because of the possibility of high amounts of iron being released into the blood where they can gather in the heart causing some reduction in heart function. The doses cited were 800 mg or more, so we always recommend taking no more than 250 mg daily for thalassemics.

Now, for some research that blows up the theory that C should be avoided because it raises ferritin.

http://www.mayoclinicproceedings.com/inside.asp?AID=4676&UID=

Quote
Higher fresh fruit intake, excluding citrus fruits and citrus juices, was associated with significantly reduced serum ferritin levels in men for both age-adjusted and multivariate-adjusted values (P=.002, Table 3). Adjusted mean ferritin levels were reduced with consumption of 7 or more pieces of fruit per week, with the lowest mean and adjusted mean ferritin levels seen with consumption of 14 or more pieces of fruit per week (Table 3) (ie, 2 or more pieces of fruit daily on average). This level of consumption was associated with a reduction of approximately 20% below the mean value of approximately 180 μg/L (to convert to pmol/L, multiply by 2.247) of ferritin seen in the groups consuming 0 to 6 pieces of fruit per week (ie, <1 piece of fruit daily on average). No significant effects of any kind (P>.1) were observed for fresh fruit consumption in women (Table 3). Consumption of citrus fruits and citrus juices (specifically orange and grapefruit) did not confer protective effects, with no significant effects on serum ferritin levels in either sex (Table 3). Consumption of vitamin C alone or as part of a multivitamin supplement did not affect serum ferritin levels in either sex (P>.1, data not shown).

Non-citrus fruits actually lowered serum ferritin in subjects. Citrus did not lower ferritin, but it also had no effect on raising ferritin. This is alarming news in light of the warnings against eating citrus or taking vitamin C supplements.

I have always realized that there was a major paradox when it comes to vitamin C and thalassemics. Thals are almost always deficient but have been warned against taking C. My intuition has always told me that this thinking cannot be correct. This study basically blows apart previous thinking about vitamin C. While thals should avoid large doses, they should NOT avoid vitamin C altogether. You read it here first. Whether you are using desferal or not, please take vitamin C supplements or eat some citrus daily. Your (bruised) body will thank you. The other part of this study shows that non-citrus fruits actually lowered serum ferritin so eat up!

This is huge. I would be very interested in what Dr Vichinsky has to say about these findings.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Multivitamins for thal major children
« Reply #11 on: December 07, 2008, 02:04:58 AM »
Andy, that is amazing... but on what basis we had  our old idea that citric fruit increases the ferritin level??????????  It should be studies too or what??? Is vitamin C still help in iron absorption????


Maybe vitamin C increases serum iron which is used by the body and thus does not stored as ferritn and therefore ferritin desn't increase??? Totally confused :huh :huh :huh :huh

manal

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Offline Sharmin

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Re: Multivitamins for thal major children
« Reply #12 on: December 07, 2008, 02:51:02 AM »
Andy,

If citrus does not increase SF levels then the reasoning behind pairing it with desferal chelation also changes.  If vitamin C does not release iron stores from the liver then it does not make more iron available in the plasma for desferal to remove.  Nonetheless, vitamin C is important for the body so it is best to take it. 

Sharmin
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Offline Andy Battaglia

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Re: Multivitamins for thal major children
« Reply #13 on: December 07, 2008, 03:18:57 AM »
I don't think you can conclude that vitamin C doesn't release iron from the liver because we are talking about serum ferritin and not free iron. This is a very important distinction. What this shows is that vitamin C is not increasing serum ferritin as relates to diet. I think that it still holds that C does release more free iron from cells and is why we still need to stick to relatively low doses of C for thal majors. However, thal majors should not have to watch their diet to avoid C foods and a small (250 mg) dose daily should be perfectly safe. Just this amount would correct many problems, so thals who are trying to avoid C altogether can rest assured that they can eat citrus and take a supplement daily. For thals who bruise easily, please pay attention to this. Vitamin C can do a lot to prevent bruising. but even this is not the most important thing. Part of the long term problem with thalassemia in addition to iron overload, is the reduction of function of blood vessels. This is reflected in easy bruising. Vitamin C is essential for normal health of the circulatory system. I would add vitamin E, magnesium, maybe vitamin D, and nitirc oxide inducers such as L-carnitine and to this mix. Preventing a reduction in efficiency of blood vessels is extremely important. as this is the main cause of heart failure in thals after iron overload, and I suspect, these nutrients will do much to prevent the pulmonary hypertension that is so common in older thals and especially thal intermedia (60% rate of PHT).

I do believe that everyone can benefit from certain supplements but with thals, they become a matter of health and should not be considered optional.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Multivitamins for thal major children
« Reply #14 on: December 07, 2008, 05:20:58 AM »
Andy,

Thanks, that post fills in a lot of gaps in my understanding.  I so wish that L-carnitine was available in Canada  :wah

Sharmin
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