Thalassemia Patients and Friends
Discussion Forums => Diet, Nutrition and Supplements => Topic started by: Sharmin on October 26, 2008, 04:55:12 AM
-
My son is 10 years old, about 27kg. I am giving him the following supplements:
Carao 4 tsp in warm milk (ordered from Lloyd Standish)
vitamin E 200 IU (Jamieson Brand)
vitamin C 250 IU (1/2 hour after beginning his desferal infusion)
B Complex vitamins Jamieson brand
vit B1, B2, B3, B6, and B12 50 mg each
Biotin and Pantothenic Acid 50 mg each
choline bitartrate and inositol 50 mg each
Omega 3 fish oil 2 caps a day Little Squirts brand
EPA 54 mg
DHA 37 mg
evening primrose 56
IP6 2 caps twice a day
Fermented Papaya still ordering
Osteocare awaiting order
calcium 2 X 300mg
Magnesium 2 X 150mg
zinc 2 X 6mg
vitamin D 2 X 3.8 mcg
L-Carnitine 50-100mg per kg of body weight - up to max of 3g/day
curcumin beginning 1 tsp in warm milk
I will continue to update this and let you know what I observe after using these supplements.
I think the important thing to look for when purchasing vitamins is the ingredients, knowing that they are from natural sources and they don't contain any preservatives, sugars, starches etc that can cause stomach irritation. The brand names may be different depending on where we live.
Let me know if I missed anything and feel free to add what you find to be useful.
Sharmin
-
Hi Sharmin
Please consider adding L-Carnitine. It has very important functions
1- Decreases Apoptosis
2- Maintaing healthy muscles and the most important heart muscle ( that is why the only side effect for taking it is a little bit increased activity of children i.e becoming more naughty :rotfl)
3- Prolonging the life of red blood cell so it can increase the gap between transfusions
4- In some intermedias, it increases the Hb
In my opinion best way to take it is in drops as it is tasty and easy to administer. It is also available in tablets. It has no side effects at all as each of our body cells has L-Carnitine and also pregnant women can take it safely. It should be taken by adult thal too
In Singapore conference, it was of great interest to cardiologists
The dosage is according to body weight twice a day. When first taken, it is everyday for a whole month, then later on twice a day , 5 days per week
manal
-
Thanks Manal, I will add that:)
-
Manal,
What dose of L carnitine are you using for your son? I used this supplement before my son's treatment this summer - now I am trying to re establish his supplement routine but because of the abrupt manner in which his new treatment began this summer (when we were asked to discontinue everything else for a few weeks) - I have lost track of everything especially vitamin dosages!
Sharmin
-
Sharmin, i use an Egyptian brand (drops ). The dropper is 1 ml .
Each ml contanins 300mg of L-carnitine. I give him two and half dropper 5 days per week (on two doses)
The dose for children is 50-100 mg/ kg body weight, maximal dose is up to 3g per day
So i give him 50mg/kg
please feel free toask if anything is not clear
manal
-
here comes the dumb member again with her list of questions :D *yay*
well, I just want two lines on each of the thing i mention below, so that it helps me understanding them :$
Calcium:
Vitamin A:
Vitamin B:
Vitamin C:
Vitamin D:
Vitamin E:
Magnesium:
Phosphorus:
L-Carnitine:
Zinc:
can any of you please write two lines for each of them so that i can understand them... and can start them, am taking them right now except Magnesium, Phosphorus, L-Carnitine and Zinc, and kindly mention the doe please???
and btw, few weeks ago I mentioned that I have got to know I have Hep. C, but after getting the result of my test of Hep. C PCR, It is clear that I don't have Hep. C and being a dumb member I shared my problem but I couldn't update that I have got result :$ am extremely sorry... :$ thanks for your care, time and support thanks alot! and please please please please forgive this dumb member :$
-
Ayesha, in general thal has contionous depletion for all minerals and vitamins because the body is under great stress. Those viamins have many functions but i will just say what may be of concern to thal. So this means that these are NOT the only functions
Calcium & Phosphorus: Both are essential for healthy bones. This is important to thal because usually the bone marrow is active and cause a lot of pressure on bones causing them to be brittle that is why you need to have as much as possible healthy bones. Phosphorus should be present in order for the cell to release energy needed for metabolism
Vitamin A: important in the formation of red blood cells, vision, growth and development, immunity, and one of the most things is that its defiency causes zinc defiency too
Vitamin B:There are lot to say here and there are many vitamin B like B6, B12,.... but they are also important for blood formation, nervous system, gene expression and they act as coenzymes. Their presence is important for the formation of many enzymes. Increase the immunity
Vitamin C:For thal it shouldn't be taken within meals but rather between meals as it helps in the absorption of iron. It should be taken after half an hour from the starting of desferal because it helps to release more iron out of the body. A max dose for a thal is 250mg everday. Though we have to stay away from Vitamin C because of iron , we should not have deficiency in it because it is an antioxidant and can regenerate other antioxidants such as vitamin E . It is important to in the formation of carnatine.
Vitamin D:You have to have it in order to absorb Calcium and Phophrous and therefore vitamin D defiency leads to Osteoporisis. It is important in the secretion of insulin. Helps in growth
Vitamin E:it is an antioxidant, research in Singapore conference said it was safe to take daily up to 600mg but it should be from a natural source. It is very important for thal because they have a very high oxidative stress
Magnesium: makes the red cell membrane stronger and therefore prolonging its life and therefore decreasing hemolysis leading to a decrease in the levels of bilirubin and therefore helps in the less formation of gall stones, important to the heart because togather with calcium regulates the heart beats, it is important in more than 300 reactions in the body
L-Carnitine:Decreases Apoptosis, maintaing healthy muscles and the most important heart muscle, prolonging the life of red blood cell so it can increase the gap between transfusions, in some intermedias, it increases the Hb
Zinc:Most of the metabolic reactions depend on the presence of zinc. They can have three roles either thy help in formation of enzymes, or they themselves are the main components of proteins or they can regulate certain body functions. Very important for growth that its absence may cause growth retardation to children
Ayesha, i tried to be brief but you can learn more about the above in this link
http://lpi.oregonstate.edu/infocenter/vitamins.html
Also in my opinion, i think that if there is a possibility to check these levels in the body would be the best choice because sometimes things contradictes with other .
For example too much zinc decreases the absorption of magnesium and chelates copper
Hope this helps
manal
-
Ayesha also asked the question in name of me.
I can't believe that you all taking so many supplements. I only take 5mg of folic acid daily. In the past I forgot it 9 of 10 times.
All my docs never mention this stuff. Thank god, i'd a new doc at the age of 16 who told me to start with chelation therapy so fast as possible. I have never been warned for that. I did take a few L1/deferiprone, but it wasn't enough. My ferritine was at that time 5000. It's 2400 at the moment. Exjade isn't doing his job very well yet;)
Be proud of yourself that you all know so much about it.
Cheers, Dore
-
Never mind Dore, better late than never :wink
Please feel free to ask whatever you want and welcome dear :hugfriend
manal
-
I would like to know the difference when taking the vitamins mentioned in the post along with the chelator being used. For example, Vit C is good when used with desferal, but what if someone is not at all on desferal and on either L1(Kelfer) or Exjade(Asunra), should they still take Vitamin C?
Thanks Sharmin for the post.
-
Narendra,
Although I don't have a definitive answer to that question - I am basing it on the reasoning given for using vitamin C 1/2 hr after desferal infusion is started.
Vitamin C is thought to release iron stores from the liver - when administered with desferal infusion it increases the iron available for desferal to bind and remove from the plasma. Vitamin C is given when some desferal is available in the blood stream and will then be available for 9.5 to 11.5 hrs continuously after.
If we use this reasoning with Exjade, it is known that Exjade has a longer half life so it is available in the body for up to 14 hours after consumption. Technically, if vitamin C is taken 1/2 hour after Exjade the same might apply as desferal. I don't know if the Exjade is also as efficient as desferal at removing free iron from the plasma but I know that it should bind some free iron from the plasma and excrete it.
The story for L1 is different because of the shorter half life - so if the L1 is taken several times a day MAYBE - the same logic would apply - taking vitamin C with it would improve chelation.
I am guessing that vitamin C for enhancing chelation purposes probably apply mostly to desferal - because desferal does not tend to work as well at the tissue level - instead it does a better job of removing iron from plasma. L1 and Exjade do remove iron at the cellular/tissue level therefore the need for vitamin C is not the same.
Vitamin C for L1 and exjade users may be more for the other protective benefits that it provides. As far as safety - I would imagine that vitamin C is safe to give with a dose of any chelator because the chelators are present to bind the free iron released from the liver by the vitamin C. However, a good doctor should be consulted because this deduction is limited by my 'logic'.
Remember too that taking vitamin C with no chelator on board may be hazardous to thalassemia patients for two reasons:
1. it increases the iron absorption from food
2. It releases free iron from the liver - which is then available to damage the organs because no chelator is present to bind it.
Sharmin
-
Andy,
Can you help me answer and expand on the use of vitamin C and its use with Exjade and L1?
I know that thals should not use it if there isn't a chelator on board because it releases free iron from the liver - and that it aids desferal by means of this mechanism, as desferal removes free iron from the plasm. Should it be safe to use vitamin C in the same way with L1 and exjade? I also hope to have my son on exjade for the most part in the future - but I really want to continue to give him vitamin C (to 250 IU as dr. vichinsky advised). Since we have increased his dose of vitamin C he does not bruise and seems to be doing very well. While reveiwing our vitamins he remarked that the 100 IU we were giving was 'not enough'.
Sharmin
-
Manal!!!! thanks a ton for those details, now another task for you guys *me loves to bug you guys :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl *
my tablets of vitamins and calcium and everything is over, and i gonna buy them this week, now I want you to suggest me dose and tablets, what shud i take? and how much?
my weight is 55 :$ and age 21 :)!
waiting for detailed reply hehehe :D
and am not sorry for buggin :D :D :D :D :D!
-
Ayesha,
Although i am not a doctor but i'll advise you some brands,but please check with the doctor first,
I think you should be taking,Folic acid,(Folitab or any other tab,daily),calcium +Vitamin D (Chew cal ,daily),half a tab of Abocal after starting desferal,Vitamin E (Tokosvit 1 or two tabs,daily),Zincat syrup (containing Zinc,two spoonful,daily).I am sorry i am unable to locate any brand containing megnesium.Add a multi vitamin with out iron and with out a high dose of vitmin C.For that you'll have to bug the chemist :biggrin.
Along with all these my daughter is taking IP6,wheat grass and carao.
Anything else you want to ask,i'll be happy to answer :hugfriend.
Zaini.
-
Thanks alot for the reply Zaini! i appreciate it :)!
there is tablet I asked from Chemist: Supradyn-N contains:
[Copper:1mg, Phosphorus:25.5mg, Zinc Oxide:0.5mg, Thiamine HCl (Vitamin B1):20mg, Tocopherol (Vitamin E):10mg, Retinol (Vitamin A):3333IU, Riboflavin (Vitamin B2):5mg, Nicotinamide:50mg, Molybdenum:0.1mg, Manganese:0.5mg, Folic Acid:1mg, Iron Salts:50mg, Magnesium Oxides and Hydroxides:18.8mg, Cyanocobalamin:5mcg, Biotin:0.25mg, Calcium Pantothenate:11.6mg, Calcifediol:500IU, Ascorbic Acid:150mg, Pyridoxine:10mg, Calcium:50mg]
and Revitale-B contains:
[Inositol:10mg, Pantothenic Acid:12mg, Thiamine HCl (Vitamin B1):2.8mg, Riboflavin (Vitamin B2):3.2mg, Nicotinic Acid:36mg, Folic Acid:400mcg, Cyanocobalamin:2mcg, Biotin:0.15mg, Pyridoxine:4mg]
now tell me guys is it ok to take any of them? Supradyn contains IRON SALTS :S 50 mg :S and yes here is another: Centra Silver
9 WATER SOLUBLE VITAMINS
Vitamin B1 1.5 mg
Vitamin B2 1.7 mg
Vitamin B6 3 mg
Vitamin B12 25 mcg
Niacin 20 mg
Biotin 30 mcg
Pantothenic Acid 10 mg
Folic Acid 200 mcg
Vitamin C 60 mg
5 VITAL MINERALS
Calcium 200 mg
Magnesium 100 mg
Potassium 80 mg
Phosphorus 48 mg
Chloride 72 mg
Lutein 2.5 mg
4 FAT SOLUBLE VITAMINS
Vitamin A 6000 IU
Vitamin D 400 IU
Vitamin E 45 IU
Vitamin K1 10 mcg
12 TRACE ELEMENTS
Iron 9 mg
Zinc 15 mg
Iodine 150 mcg
Copper 2 mg
Selenium 25 mcg
Manganese 2.5 mcg
Chromium 100 mcg
Nickle 5 mcg
Silicon 10 mcg
Vanadium 11 mcg
Molybdenum 25 mcg
Boron 150 mcg
it contains 9 mg Iron
I still can't find any multivitamin widout IRON :|
-
If the supplement contains any iron it is not suitable for thalassemia majors.
-
Narendra,
Looking over all of the other supplements - I don't think their use should be affected by the type of chelator being used. Just make sure that she is getting her minerals because chelators tend to deplete them as well while chelating iron.
I am also beginning to see the value of spreading out the dose of IP6 throughout the day as this way it would be most useful in binding free iron throughout the day. The key to preventing iron related damage is to have something constantly available to bind the free iron.
Sharmin
-
Re: Vitamin C and chelators.
http://www.us.exjade.com/hcp/resources/faqh.jsp#t12
Can EXJADE be taken with vitamin C?
The concomitant administration of EXJADE and vitamin C has not been formally studied. Doses of vitamin C up to 200 mg were allowed in clinical studies without negative consequences.
I have put a query into Apo Pharma about C and deferiprone. The initial response from my contact is that he doesn't know of any studies of C and Ferriprox but he is putting in further queries about it. I will update when I know more.
Vitamin C in low doses is known to be safe in thals, but it should not be taken with any iron-containing foods.
-
Ayesha,
There is a multivitamin with out iron i.e Becefol,but it contains 750 mg of Vitamin C,which is not suitable for you,keep looking,as i also need a multi vitamin with out iron for myself..
Zaini.
-
Ayesha ,
My daughter takes Vidaylin Syrup as multi vitamin,it does not contain any iron and have only 50 mg of Vitamin C,perhaps you can take Vidaylin-T tablets which contain,
From http://www.abbott.com.pk/ViDaylin.htm#e
VIDAYLIN-T
Ingredient(s): Each ViDaylin-T filmtab tablet contains: Composition
Vitamin A 2500 IU
Vitamin D 400 IU
Vitamin E 15 IU
Folic Acid 300 mcg
Vitamin B1 1.05 mg
Vitamin B2 1.2 mg
Vitamin B6 1.05 mg
Vitamin B12 4.5 mcg
Vitamin C 60 mg
Niacin 13.5 mg
Check it out with the doctor first.
Zaini.
P.S Don't stop taking Vitamin E and folic acid seperately.
-
it doesn't contain Zinc, Phosphorus, Cartinine and Magnesium and Calcium :$
m asking for too many things in just one tablet :(
sick of taking so many tabletsssssssss!! :(
-
There is also the Kiddie Pharmaton brand (syrup), it is an international brand found in almost all countries. It does not have iron or vitamin C but no minerals too. So i guess Ayesha you will have to have the mineral in a seperate pill :-\
manal
-
Yeah that's true,you'll have to take seperate tablets for minerals,unless you have a credit card with an account full of dollars :biggrin coz there are some international brands which are fabulous.There is a multivitamin that contains all vitamins and minerals,but it also contains iron,not suitable.it's by the name of Optilets-M by the way.
Zaini.
-
Hi all ,
i m asking to my chemist about the brands you mentioned they dont have even one . i asking to my abot Tkosvit to a long time ( when Zaini mentioned first time ) but they even dont have that one .. soo i ran here to therehere and then finaly got a Vitam-E Supplement 400mg of The Vitamin Company .. soo .. i decided to take that supplement which is available , Complusion's other name is Thanks . soo a big thanx to the chemist who have The Vitamin Company's Vitamin-E supplement ( on the supplement content's there is written that it is Natural vit-E ) .... shuh .... search is over i think i got something . i want a change only it feel's very bad to take a tablet for a long time like i was taking /merck's Vitamin-E , i wanted a little change .. ehehhe
Take Care
Umair
-
Andy,
Is L-carnitine the same as or similar to arginine? Can I put my son on both? I plan to give him 2.7g of L-carnitine, how much arginine would be good for him?
Thank you,
Sharmin
-
Umair,
It's really amazing why you can't find these brands,have you checked all big stores in the city?
Zaini.
-
Hi Zaini ,
i checked many store like Serveaid , Care Pharmacy and local big names of medicose .. didnot find anything ... i will check again otherwise i will check for these medicines in lahore when-ever i will go to visit my doc .... i hope i will meet to succes .... dont worry nothing serious here ... if i failed to catch these medicines here and lahore then i wil contact again to kausar medicose for the medicines as i i did in starting of Ferriprox ...
take care
Umair
-
Hi Sharmin,
L-carnitine is a building block of an amino acid while arginine is an amino acid. They are both important Nitric Oxide precursors. I have seen supplements that have both along with CoQ10 in a liquid formula. CoQ10 is another supplement important for heart function. The amounts in the supplements I've seen are equal for L-carnitine and arginine. You may want to check with DR Vichinsky on proper dosage, but equal amounts of each would be the place to start.
An example of this product can be seen at http://www.luckyvitamin.com/item/?itemKey=60531&site=google_base
-
Thanks Andy,
I will send off an email today. I will let you know when I get a response.
Sharmin
-
guys finally after taking so many days i have bought two things:
Calcite 600 which contains:
Calcium (carbonate) 600 mg
Vitamin D 200IU
Magnesium (oxide) 40 mg
Zinc (oxide) 7.5 mg
Copper (oxide) 1 mg
Manganese (sulfate) 1.8 mg
Boron (sodium borate) 200mcg
and
Rovigon
Vitamin A - 30,000 IU
Vitamin E - 70 mg
let me know what u think abt these two things and what else i need?
-
My comment Ayesha is that the vitamin E is very little. In Singapore conference, the studies showed that it is safe to take up to 600mg daily. Also my son who is 6 years takes Vitamin E 400mg alternating days.
As for calcium, i can see also it is low as you should take at least 1000mg daily (for an adult) and children and adolescents should consume a total (diet plus supplements) of 1,300 mg/day of calcium.
http://lpi.oregonstate.edu/infocenter/minerals/calcium/
and gererally magnesium should also be half the intake of calcium
Manal
-
Ayesha,
You'll have to take seperate suppliments for these things,this is the best option,you know imtiaz store at bahadurabad,they have quite a range of meds,they also have tokosvit (vitamin E).
Zaini.
-
I have been attempting to purchase L-carnitine - I was told today that it is not approved for use in Canada - but it is approved in the US. I was told that it was not because of safety but for other issues.
They told me to consider citrulline instead. Does anyone have any comments?
Sharmin
-
http://findarticles.com/p/articles/mi_m0FDN/is_4_10/ai_n15969609/pg_1?tag=artBody;col1
For example, most infants with pulmonary hypertension have an increased level of asymmetric dimethylarginine (ADMA- an inhibitor of nitric oxide production) in their blood. The easiest, most efficient method of combating this condition is to supplement with L-arginine, which overcomes ADMA's nitric oxide inhibition.
Although safe, citrulline does not directly convert to nitric oxide, but instead is recycled to L-arginine (an ATP-dependent process), which then converts to nitric oxide. Ferid Murad, MD, PhD, Nobel-prize winner for his research on nitric oxide, has said the use of L-citrulline to increase nitric oxide is only marginally effective.
Common sense says toss out the Viagra, the BiDil and the citrulline, and utilize L-arginine. Change bad medicine to good medicine and ignore the hype.
-
Hi All ,
for Calcium and Vitamin-D , i m on DeCalc tablets 2 tablets thrice a day ,
DeCalc
Each tablet conatin's ,
Elemental Calcium ( as calcium lactate Pentahydrate U.S.P & Calcium Phosphate U.S.P ) ..... 125mg
Vitamin-D B.P ... 500 i.u
is it good ??? ..
take care
Umair
-
Andy,
As it is near impossible for me to get L-carnitine for my son - should I start him on L-arginine? If so what would be a good dose for him (27kg) ?
Thanks Andy,
Sharmin
-
Sharmin,
Since Big Brother Health Canada has made L-carnitine a prescription only "drug" (OMG! drug???? L-carnitine is produced in the human body!), I think you should try L-arginine. 500 mg daily would be fine.
This is exactly why consumers have to continue to defeat bills like C-51. It only gets worse from here if we allow the bureaucrats to decide that food products are drugs.
-
Thanks Andy,
I'll start the L-arginine :)
These restrictions are really making it difficult for people to be proactive and preventative in their health care.
Sharmin
-
Sharmin, can't you tell your dotor about L-Carnitine and you can also show him the studies and papers describing how it is very beneficial to thal and he in turns write a prescription for you in order to buy it
manal
-
Sharmin
I just read that Lysine helps the body to make Carnitine
http://www.pharmaton-kiddi.com/com/Main/formulation/lysine/index.htm
Kiddie Pharmaton has Vitamin C and iron and other things while the Kiddie Pharmaton we have here in Egypt which is manufactured under lisence does not have Vitamin C nor iron for marketing reasons and to control its price
manal
-
Manal,
Thank you dear for this information :hugfriend :hugfriend
I will get on the Lysine and L-argenine for little A - thank you again:)
Sharmin
-
Okay m here once again! bear me :rotfl
I found Osteocare at my pharmacist :cheer :cheer :cheer , haven't bought yet but I wanna know if its Ok for me and Salman to use!!!??
:D once again you guys will have to answer (A) :P thanks in advance!
-
Ayesha, when i showed the Osteocare syrup to me hematologist, she said it was an excellent combination and recommended continous use, you will find the dose of the adult written in the pamphelet, good luck
manal
-
Ayesha,
You should have said "Yurika!!" :biggrin where did you find it,tell me.It will also help my husband who has knee ache,and doctor has told him that the fluid between his knee joints is nearly to an end.
Zaini.
-
aaaa such a relief! :D i gonna buy it next time!!! :D
ok here it contains:
Nutritional Information Average Per 2 Tablets % RDA
Calcium 800 mg 100
Magnesium 300 mg 100
Zinc 10 mg 67
Vitamin D 5 mcg 100
Manganese 0.5 mg --
Selenium 50 mcg --
Copper 1 mg --
Boron 0.6 mg 100
mg – milligram, mcg – microgram, RDA – Recommended Daily Allowance (EC)
so i can use :D?
Zaini: have ya seen medicine market near Hamdard? (Aram Bagh) if you want i can buy it for you :) its arund 400 per pack! n sorry if i remember it is a pack of 30 tabs (i forgot sorry)
-
Hi
My doc and hema refuses to prescribe any calcium for Hassan. They just say at the moment he does`nt require it. Infact my hema told us to even stop folic acid (I have`nt followed his advise though). After reading so many posts on supplements I have purchased osteocare. The dosage for his age is 5ml twice a day( 2 1/2 years). Should I follow the reccomended dose or can I just give him a maintainence dose of 5ml/day. Also what should be the dose of vit E for his age. Is it necessery to let the doc know that he is taking osteocare.
take care
maha
-
Oh my God Maha, what is their point !!!!!!!!!!!
Folic acid should be taken even by minors. It is very safe and even taken in pregnanacy. It is water soluble and this mean that any extra of it in the body is excreted in the urine. It helps in prolonging the life of the red blood cells
As for the calcium ,every thal neeeds calcium and when i showed the Osteocare to my Hematologist, she said it was a super combination and also recommended the chewable one cause it has trace elements like selinium. She told me to keep on giving it to him forever as it has an excellent combination. If i were you i will insist that my child takes calcium
As for the Vitamin E dose
http://lpi.oregonstate.edu/infocenter/vitamins/vitaminE/
Children 1-3 years 200 mg (300 IU)
My son takes 400mg alternating days, but it is important to take it from a natural source rather than a synthysised source as long that it will be taken permenatly
Maha by the way, are you giving Hassan L-Carnitine???
manal
-
Hi Manal
Initially the doc had prescribed folic acid for Hassan. Once on a routine visit I had asked the doc if I had to increase the dosage of folic acid he just said if he is on a hypertransfusion regimen he does`nt need any kind of supplements. All he needed was blood at the right time and when the time comes proper chelation. At the moment I give him folic acid 1mg , and a vitamin supplement named Mixavit. His dose of 2.5ml contains Vit A - 2500 IU, vit D - 250 IU, vit B1 - 2.5mg, vit B2 - 1mg, vit B6 - 3mg, vit B12- 3mcg, Ascorbic acid 25mg and nicotinamide10mg. I just started to give him osteocare 5ml/day. I will look out for the chewables once I finish this bottle. He gives me a hard time taking it. Is there any vitamin supplement that includes vit E ? No, I do not give him L-Carnitine.
-
Maha
I think that even if he is transfusing, he still needs the function for which folic acid is taken, that is prolonging the life of the red blood cell. No contradiction. Whether a thal patient is transfusion dependent or not, the body is under a big stress and always in need for vitamins and minerals.
I learned in Singapore ( though it is a different example but it is the same idea) that whether you transfuse or not or whether you live with high HB due to transfusion or with low Hb . Osteoproseis is one of the challenges that thals face because there are other multifactors that leads to it, so how can a thal ignore taking calcium and this challenage exists. Though it is not only calcium but we can not just ignore taking it.
Vitamin E is also found in Kiddie Pharmaton brand
http://www.egydoc.com/sites/egydoc.com/main/dbase.asp?code=5589
Panthenol 10 mg
Calcium 130mg
Lysine Hydrochloride 300mg
Nicotinamide 20mg
Phosphorus Phosphate 200mg
Vit B1 (Thiamine) Hydrochloride 3mg
Vit B2 (Riboflavine) 3.5mg
Vit B6 (Pyridoxine HCl) 6mg
Vit D3 (Cholecalciferol) 600 I.U
Vit.E 15mg
But this is the one manufactured n Egypt under lisence and has no Vitamin C or iron. There are other kinds of the same brand that has iron and vitamin C too.
I think Maha that you should give Hassan L-carnitine as mentioned in the second post of this same thread for its important functions to all thal in addition to being an antioxidant
Please consider adding L-Carnitine. It has very important functions
1- Decreases Apoptosis
2- Maintaing healthy muscles and the most important heart muscle ( that is why the only side effect for taking it is a little bit increased activity of children i.e becoming more naughty )
3- Prolonging the life of red blood cell so it can increase the gap between transfusions
4- In some intermedias, it increases the Hb
In my opinion best way to take it is in drops as it is tasty and easy to administer. It is also available in tablets. It has no side effects at all as each of our body cells has L-Carnitine and also pregnant women can take it safely. It should be taken by adult thal too
In Singapore conference, it was of great interest to cardiologists
The dosage is according to body weight twice a day. When first taken, it is everyday for a whole month, then later on twice a day , 5 days per week
manal
-
Hi Manal
Is there any official document or something , relating to the use of L-Carnitine on thalassemia patients. Maybe my doc could understand better if it is on paper.
takecare
maha
-
From http://www.vitamins-nutrition.org/vitamins-guide/l-carnitine.html
How This Supplement Works in Your Body:
Promotes normal growth and development
Possible treatment for (and maybe prevention of) some forms of cardiovascular disease
May protect against muscle disease
May help build muscle
May protect against liver disease
May protect against diabetes
May protect against kidney disease
Potential diet aid
May make low-calorie diets easier to tolerate by reducing feelings of hunger and weakness
May increase energy and activity in people with congestive heart disease
Zaini.
-
Hi Zaini
Thankyou, but I wanted to know if there was enough evidence on paper regarding its use on thalassemia patients as Manal said it was discussed in the singapore conference.
regards
maha
-
Yes Maha, there are about 5 papers done on the usage of L- carnitine and thalassemia and Prof. El Beshlawy (Ahamd's hematologist) is one of leading Prof in this area , they are all published in scientific journals.
Improvement of Cardiac Function in Thalassemia major Treated with L-Carnitine
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=76522&Ausgabe=229926&ProduktNr=223829
Assessment of Puberty in Relation to L-carnitine and Hormonal Replacement Therapy in {beta}-thalassemic Patients.
http://lib.bioinfo.pl/auth:El%20Beshlawy,A
Apoptosis in Thalassemia major Reduced by a Butyrate Derivative
http://content.karger.com/ProdukteDB/produkte.asp?Doi=87890
Diastolic Dysfunction and Pulmonary Hypertension in Sickle Cell Anemia: Is There a Role for L-Carnitine Treatment?
http://content.karger.com/ProdukteDB/produkte.asp?Doi=89472
Pulmonary hypertension in beta-thalassemia major and the role of L-carnitine therapy.
http://www.ncbi.nlm.nih.gov/pubmed/19065439?dopt=Abstract
All thal patients in Egypt take L-carnitne, may be because all the papers had Egyptian professers participating but i can assure you that it is a safe substance that is already found in each cell in our bodies. Hope this helps Maha and keep us updated
manal
-
Dear Manal
Thankyou for the info.I will take it with me on my next appointment. Will update on what they have to say .
thankyou once again
maha
The youngest participant in the study was 6 years old. I know Ahmed has been taking it from the age of 4, but can a 2 year old take it safely?
-
Maha
What i know that it is safe and it is taken according body weight. I know a thal intermedia child that is taking it and he started it when he was 18 months.
Also i found many baby food that contains L-carnitine
..........L-Carnitine, Taurine, Ascorbic Acid, Lo Han Extract, Vitamin D, Stevia Extract, Rutin, Vitamin K, d-alpha -tocopherolsuccinate, SunActive FE ® Iron as Ferrous Pyrophosphate, Niacinamide, Vitamin B5, Boron Chelate, Magnesium Chelate, Vitamin B6, Copper Chelate, Vitamin B2, Vitamin B1, Vitamin B12 as........
http://www.babyorganic.com/cart.php?target=product&product_id=16190&category_id=249
So this means it is safe
manal
-
:boredom I wonder why it isn't available here :scratch.
Zaini.
-
Hi Manal
Thankyou once again. :hugfriend
maha
-
Andy,
I am planning to pick up a selenium supplement for lil A today - is 50mcg a good amount? (he is 27kg).
For now, I have a lot of liquid osteocare - when I finish it I will order the chewables which has the trace elements. In the mean time should I pick up a copper supplement too?
Lastly, should I get vitamin K for him? If so how much?
Thank you Andy,
Sharmin
-
Sharni,
50 mcg selenium daily is fine. Why vitamin K? Unless there is an ongoing low platelet problem, I would not recommend adding vitamin K, as enough should be found from a balanced diet. Small amounts may also be found in multi-vitamins. Some studies suggest that those at risk for bone fractures because an osteo condition already exists should supplement with high doses of vitamin K for short periods, but little A does not fall into this category.
-
Thanks Andy,
I will get him the selenium. I don't know much about vitamin K - but I saw that some calcium supplements had vitamin K therefore I wondered if it is something thals could use. Thanks Andy :hugfriend
Sharmin
-
Vitamin K is involved in building bone so that is why you see it in calcium supplements. There is also a test for vitamin K, so when it is suspected that there is bone loss, it should probably also be checked. However, vitamin K is something that can be found in the diet and even many multi-vitamins, so extra supplements are usually not needed. My concern would be about getting too much K, which might be a problem for thals who tend to have clotting issues.
-
But vitamin K leaves the body pretty fast. That's why you must try to get it daily. Right?
-
My concern would be about getting too much K, which might be a problem for thals who tend to have clotting issues.
Thank you Andy, that makes sense.
Dore, I am thinking that the amount of vitamin K thals need is readily available from food - any extra in the form of supplement only puts them at risk for blood clots. I am guessing that this may apply to you as well, but I am not sure ??? I hope you are doing well - and that your dad is doing well also :hugfriend
Sharmin
-
Now that I've had some more time to read about vitamin K I will comment more.
It is almost impossible to take too much vitamin K, except with infants. It does not stay in the body long and the only danger is if you are on anticoagulant drugs like warfarin, because it can negate the effect of the drug. High amounts of vitamin K will not cause clotting issues, so that isn't a problem to be concerned about. Vitamin K does contribute to bone health but like everything else, it needs vitamin D to work properly. Vitamin K is found in green leafy foods and vegetable oils and should be sufficient in the diet, but realistically, is this true? Not only don't we eat enough of the green vegetables, but thals are often advised to avoid these very foods because of their iron content, even though thals are seldom told to avoid meat which has a much more readily absorbed form of iron. The body does have a mechanism for recycling vitamin K so this is another factor that helps prevent deficiency. I think thals who have shown to have any bone loss would be advised to up their intake of vitamin K, either through foods or supplements.
-
Thank you Andy this is very interesting
manal
-
One thing about this ongoing topic of nutrients is that the understanding of them is advancing and many of the prior notions were wrong. For example, we were always warned about taking too much of fat soluble vitamins like A, D and E. Now we know that vitamin D can be taken in huge amounts without any negative result, vitamin E can be taken in doses up to 1000 IU daily without concerns and only vitamin A is one that should be kept in lower doses.
Another note about vitamin K and bones, is that there is a possibility that it is really vitamin D that causes the bone gain. Vitamin K may be a factor but it is vitamin D that makes it work.
And on the subject of vitamin D, it is really something of a natural hormone and is a receptor in the body and it is needed for many other nutrients to be used by the body. Without sufficient D receptors, many nutrients cannot be absorbed in quantities necessary for bodily functions. It isn't only plants that need sunshine to survive. Our bodies are made to run with plenty of sunshine-provided vitamin D and it is needed for a multitude of bodily functions.
-
Hi, I meant that each human should try to eat a bit of salad (green leaf?) daily with a bit of oil to help the body to absorb vit K better. Do not use vinegar ecause that makes it more difficult for your body. This is told to me by a very intelligent ladies whose source were scientics article and books about hemochromatose.Ach,there is so much left to learn. I still have the plan to order some books about this medical field. I'm glad to be here in because our future looks pretty bright :) wed I will attend the Dutch Day of Rare Diseases, and most of those other attendees have progressive diseases. It breaks your heart.
-
Andy,
I purchased selenium for lil A - and gave him his first pill today. (Natural Factors, Selenium 50mcg).
Recommended Use: selenium is a factor in the maintenance of healthy body cells and tissues and acts as an antioxidant for the maintenance of good health.
Caution: consult a heatlh care practitioner prior to use if you have a history of non-melanoma skin cancer. For adult use only. Keep out of reach of children.
Should this be a concern for thal patients, in terms of abnormal cell growth etc? This is not something I really understand.
Sharmin
-
This would not appear to have any particular relevance to thalassemics and the warning is strictly aimed at those who have a pre-existing history of non-melanoma skin cancers. However, a review of the study this is based on shows that this warning is a knee jerk reaction to findings that there was a marginal increase of repeat skin cancer in those in the study who took selenium. Even though this marginal finding was not statistically relevant, the news media and apparently, the over-reactive Canadian Health Authority took off with this NOT significant result and tried to scare people away from selenium use. A cynic might conclude that this is intentional as many studies have actually shown that selenium reduces the cancer rate in those who have a high dietary intake of selenium. These findings were not marginal and showed selenium to be of value in preventing MOST types of cancer. Furthermore, recent studies using mice, suggest that selenium may reduce incidence of melanomas. In addition, the researcher who ended a long term study of selenium in 1996 that showed its value in preventing cancer, disagreed with some of the techniques used in the later study and suggests that environmental sources of selenium and other metals (ie. industrial pollution) may have more to do with the observed rates of skin cancer recurrence in the subjects in the latter study. This warning is not found on selenium supplements in the US.
I would also like to point out that many studies are doomed to failure because of their poor design. I would like to point to a much publicized study showing that selenium and vitamin E did not prevent prostate cancer. One look at the study tells me it was intentionally designed to fail, as the vitamin E chosen for the study was dl-alpha tocopherol, the synthetic version of vitamin E which has little if any value. D-alpha tocohperol is the natural form and many studies have steered clear of using this and instead used the dl version which is actually a by-product of the film industry (good for Kodak at one time, but of extremely questionable value to the health).
Selenium is one of the trace elements recommended by Dr Vichinsky for thals and its value is not in doubt. Doses of 50-200 mcg daily are recommended.
-
Thanks a lot Andy,
I am glad that I have started giving lil A selenium.
Sharmin
-
Sharmin, take care that when you start the Chewable Osteocare, it already has Selenium 50 mcg
manal
-
Thanks Manal, I will remember that :hugfriend
Sharmin
-
Andy & all others,
as Vit-K help's body for clotting, i sugested vit-K rich vegies to my cousin who is a Heamophilia patient (factor 8) , i sugest him both type of kale/cauliflowers and lettuce like vegies a few months ago .. then recently i found Vitamin-K supplement at my chemist's shop . i want to ask .. it will b safe for my cousin to take that vitamin-K supplemment daily ( GNC Brand ), or only when bleeding start's .... i think that it will be good for im to use that supplement .and thats why i have told my aunt to ask his doctor for that , .. there is nothing to think worry in giving that to him except my only concern that is cloting in veins ... i hope to get answer very soon :)
Best Regards
TAke Care
Umair
-
Hemophilia is not related to vitamin K deficiency, but some feel that a benefit may be found by supplying the body with the nutrients involved in building blood and maintaining the circulatory system. Vitamin K, Calcium, Magnesium, Vitamin C, and Vitamin B complex are all essential for normal blood coagulation, formation, and clotting. So, it won't hurt and may help with his overall blood health if he takes some supplements.
-
Andy ,
Thank you for a detailed reply , he ( my cousin who is a Haemophilia patient ) is having a bruise over his arm in result of strucked with something , he is around 10-12 years old , i red somewhere that Vit-C is good for bruises bcoze bruise are the indication of damaged blood vessel under skin ( something like that ) so i think he should have to take these supplements especially vit-k bcoze it help's body to proper cloting... question is : is he can take vit-k daily or only when he get hurt or when bleeding start's ???
Umair
-
Andy,
I recently started giving lil A B-Force 50 by Prairie Naturals (Vitamin B Complex with P5P & methylcobaliamin)
Each vegetable capsule contains:
Vitamin B - 1 (thiamine HCL)..............50mg
Vitamin B - 2 (riboflavin)...................50mg
Vitamin B - 3 (niacinamide)................50mg
Vitamin B5 (calcium-D-pantothenate)...50mg
Vitamin B6 (pyridoxine HCL)...............45mg
Vitamin B6 (pyridoxal-5-phosphate).....5mg
Vitamin B - 9 (folic acid)....................1,000 mcg
Vitamin B - 12 (cyanocobalamin).........50 mcg
Vitamin B - 12 (methylcobalamin)........100mcg
Biotin.............................................500mg
Choline (choline biartrate)..................20mg
Inositol...........................................50mg
Para amino benzoic acid (PABA)..........50mg
I was told that this product has very good absorption. How does this supplement sound to you Andy?
Sharmin
-
Andy,
I am giving lil A Osteocare (I ordered a box of the liquid a while back, I will order the chewables once the kids have finished the liquid).
I also supplement with extra vitamin D3 and zinc. Today I purchased to following to replace the zinc tablet that I give him (in order to give him copper):
Classic Series - scarce essential minerals
Zinc -Copper Balance
Mineral Aspartates and Krebs Cycle Ligands
Zinc (Citrate, malate, Succinate, Fumerate) 15mg
Copper (Citrate, Malate) 2mg
Discussion: Zinc and copper are esential minerals critical to health and commonly deficient in Western diets. Unbalanced zinc supplementation is common, which may lead to secondary coper deficiency by competing for absorption and interfering with its metabolism. Research suggests that an excessive ratio of zinc to copper has a negative impact on cardiovascular and skeletal health.
Andy, do you think that this is a good product? Should zinc/copper be balanced better b/c lil A is getting zinc in Osteocare?
Thanks,
Sharmin
-
I would not add anymore copper than that. The ratio should be around 10:1 zinc/copper, so adding a little more zinc would be appropriate.
-
The B-complex looks like a good product for a child. An adult would want to double those amounts. Also, it's best taken with meals to avoid stomach upset.
-
Thanks Andy,
As per your advice earlier - my husband and I take two tablets of the B-force and lil A takes one.
Sharmin
-
BTW, the difference that the B-complex makes in terms of energy for my son is quite amazing! It is definitely one of the best supplements I have given him.
Sharmin
-
Dr John Wood emphasized the importance of B complex at the Singapore conference. He explained that it essential for for healthy blood, and he recommended that thals take it daily.
-
Andy,
For adults taking 2 tablets of the B-complex vitamins - is it better to take both at once or is it better to take two separate doses (1 morning & 1 evening) ?
I will start giving lil A the zinc/copper supplement tomorrow.
Sharmin
-
Andy
Is is okay to give a B complex supplements in addition to the Yummi bears multivitamin and minerals ??? Or this would be too much vitamins?????
manal
-
Quote
Classic Series - scarce essential minerals
Zinc -Copper Balance
Mineral Aspartates and Krebs Cycle Ligands
Zinc (Citrate, malate, Succinate, Fumerate) 15mg
Copper (Citrate, Malate) 2mg
Discussion: Zinc and copper are esential minerals critical to health and commonly deficient in Western diets. Unbalanced zinc supplementation is common, which may lead to secondary coper deficiency by competing for absorption and interfering with its metabolism. Research suggests that an excessive ratio of zinc to copper has a negative impact on cardiovascular and skeletal health.
Andy, do you think that this is a good product? Should zinc/copper be balanced better b/c lil A is getting zinc in Osteocare?
The ratio should be around 10:1 zinc/copper
Sharmin,
Osteocare also have 10mg Zinc, soo total zinc you're giving Littl-A is 25mg after adding this supplement that is having 15mg ..... soo its a little more than Andy's sugested ratio ...
M i Right Andy ???? ....
Best REgards
Take Care
Umair
n good luck Little-A :goocluck
-
Sharmin,
You can take the B complex either way. It's more a matter of personal preference than anything. If you are feeling tired, you may want to try twice daily to see if it makes any difference by having a constant dose in your body.
Manal,
The amount of B vitamins in Yummi Bears is fairly low so it is OK to use a B complex also.
Umair,
Don't forget that there are also amounts of these minerals taken from diet. The ratio is only approximate so a bit more zinc is not a problem. The main thing is to make sure some copper is taken if on long term zinc supplements.
-
Thank you Andy,
I will try splitting my dose for the added energy.
Sharmin
-
Thanks Andy, i will start searching for a B-complex syrup too
manal
-
Thanx Andy,
for clearfying that :grin
Umair
-
Andy,
Lil A plays soccer daily at school. Today is his first soccer game of the season this year. He seems pretty active and healthy - I have given him a second B-complex this evening (he had his first pill in the morning). Is this what you would advise Andy?
Thanks,
Sharmin
ps. with the aggressive chelation - exjade/desferal 7X a week and IP6 3 times a day - his color has completely returned to normal - his complexion is completely light and clear. Thanks for your support & advice everyone :)
-
Thanks Sharmin for the good news :hugfriend, hope he will progress more and more and best of luck o the 6th of May
manal
-
Thank you Manal - I have been giving him more IP6 since your last post - thanks, it was very helpful :hugfriend
Hope our little Tarzan is doing well :hugfriend :hugfriend
-
Sharmin,
As long as little A is getting plenty of fluids and he should while playing sports, it is OK to give him a second dose of B complex on game days. B vitamins do tend to wash through the body pretty quickly and do need to be replenished.
-
Hey guys,
Lil A had his first soccer game today - his team lost 6 - 2 - however - lil A scored both of the goals for his team :) Thanks for all of your advice and constant encouragement. These kids can really do anything!
Sharmin
-
Good going lil A, you are the man (infact superman). Keep it up! :congrats
-
Hey Lil A,
Thats specially for you :wink
(http://i401.photobucket.com/albums/pp98/Greatnan_album/TonofLoveWaytoGo.gif)
Zaini.
-
(http://i61.photobucket.com/albums/h73/abel73/liam_fifa.gif)
To : Dear Lil-A ,
Hey Youngman , how r you ? Congrats Buddy for a supper start of soccer season .. great to hear that you scored 2 goals hummmmm ..... i m very glad to hear that ... em really proud of you buddy , reallly inspired by your will power/self determination ..... Wish you all the best for your health, future and everything ....
(http://i383.photobucket.com/albums/oo274/Nice_Friend/toshiro-soccer-160.gif)
Best REgards
Take Care
Umair
-
Thank you kindly for your encouragement my friends. It is nice to see that all of the little ones are doing well. I think that this site helps us immensely in keeping them healthy. Thank you all for your constant support and advice that makes all of this possible.
:heartred :heartred
Sharmin
-
Hi Friends
I have found 2 type of L-CARNITINE in GNC store. Which will be best for Priya & what dose?
Acetyl- L-Carnitine 500 Mg 60 Caps
Tamaño de la porción: 1 Cápsula.
Porciones por envase: 60
Cantidades por porción
Contenido energético 1,36 KJ (0,32 kcal)
Proteínas 0 g
Grasas (Lípidos) 0 g
Carbohidratos (Hidratos de Carbono) 0,08 g
Sodio 0 g
Acetil L-Carnitina 500 mg
P.P. Liquid L-Carnitine 16 Oz this is written on the bottle(FREE-FORM Amonic Acid)
Tamaño de la porción: 2 Cucharadas. (30ml)
Porciones por envase: 15
Cantidades por porción
Contenido Energético 212,5 kJ (50 kcal)
Proteínas 0 g
Grasa (Lípidos) 0 g
Sodio 0,007 g
Carbohidratos (Hidratos de Carbono) 0 g
L-Carnitina 1 000 mg
Potasio 11,07 mg
Calcio 1,4 mg
Acido Pantoténico 15 mg
Thanks
Dimple
-
Hi Dimple,
Either one would be a good supplement. I imagine the capsules are cheaper, so if she has no trouble swallowing pills, that would probably be a better choice.
-
Keep taking your supplements my friends - the difference that I have noticed in my son is quite remarkable. His energy and stamina have improved greatly. I believe that the B complex and L-carnitine are playing a role in this. His hg thank god, is remaining higher - he is currently getting 15cc/kg (last 3 transfusions) - after 3 weeks his hg was 106 so he will get his tx next week after 4 weeks.
I think that the supplements are benefitting my nonthal daughter too - she has grown a lot physically this year and she is gaining endurance as well.
Good luck all and take your supplements:)
Sharmin
-
P.P. Liquid L-Carnitine 16 Oz this is written on the bottle(FREE-FORM Amonic Acid)
Tamaño de la porción: 2 Cucharadas. (30ml)
Porciones por envase: 15
Cantidades por porción
Contenido Energético 212,5 kJ (50 kcal)
Proteínas 0 g
Grasa (Lípidos) 0 g
Sodio 0,007 g
Carbohidratos (Hidratos de Carbono) 0 g
L-Carnitina 1 000 mg
Potasio 11,07 mg
Calcio 1,4 mg
Acido Pantoténico 15 mg
I was taking Liquid L carnitin last yeas when i was going to the gym.
-
Should L carnitin only be taking when doing something like making a long walk?
-
is Choclate safe for thal children? i know choclate contains a lot of energy............
Najaf is a big fan of choclates............ :dunno :dunno
-
Excess of anything is bad,a chocolate here and there might not hurt,but make her habitual of healthy foods,fruits and vegetables,healthy food will help her growth too,junk is bad for everyone,be it thal or not.
-
Hello all, I've read through and all of this info is great!
are the children pretty good at taking so many supplements?
Any recommendations for Ari? He's 10 weeks and 11 lbs.
Currently on trivosol
-
Liquid folic acid drops would be recommended at this age.