SUPPLEMENTS FOR CHILDREN

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

  I wonder why it isn't available here  .

Zaini.

Hi Manal
Thankyou once again. 
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 

Sharmin