CAF: Iron Levels: How Low Can You Go?

Himanshu,
Isn't desirox same as EXjade? then it is not approved for use below 2 yrs of age I believe. We started chelation for our daughter when she turned 2 yrs and her ferritin was 1800 (she also started Tx at 2 months of age). Dr. Neufeld was very clear in his direction to not start chelatation before the age of 2 as the chelators can affect the development.
So, do make sure her growth velocity is good and she is taking mutivitamins with trace minerals. At this point, you should either discontinue the chelation till she is 2 yrs old or reduce the dosage to maintenance dose and restart at the chelation dose when she turns two. That will be my thought based on our experience.

I too was disappointed to see her iron level rising so fast. I too had concerns over giving tabs so early which would put additional pressure on liver or kidney. We started with a low dose and increased the dosage to 400mg for barely a fortnight when our pediatric asked us to go back to 250 mg. I did check this in 4 different hospitals in India, all of which i rate as the best here, and they all felt it was ok to start chelation atlow dosage.

Moreover i too was worried about rising fe level. If i had waited this long her fe level probably would crossed 3k by now. She has been growing ok so far except she is 2 cm shorter than avg.  i myself aint very tall though.

Himanshu, since you have consulted with various people, then it should be fine. You know as parents we always try to do the things that is best for our child. so, you are doing just that. Good luck!

Leena: you are right. chelation should never be stopped...but for little children who are still growing, there has to be a balance between chelation and growth. That is what I understood talking to my daughter's hemo both in boston and oakland. so start of chelation and how agressive the chelation should be when ferritin is below 500 varies from child to child.

Binita: what i know from Transfusion reaction is that you will get rashes or your pee will be coco-cola color and will have high fever. if none of those symptoms were there, the hospital should be able to do some tests to rule out Tx related issue. I do not know why liver will be enlarged. May be Andy can have some input there. For the ferritin, if it is 220 now, which is really low for a growing kid, your doc should advise you to reduce the dose to a maintenance dose and pay very close attention to creatinine, ALT/AST #s to make sure your child is doing ok. This input is based on what we have seen with my daughter.

Dear Bostonian,

I could not agree more with you about our concerns as parents and I am extremely glad that you brought up this points and wrote to me. This is what this site is all about. Nothing gives me more pleasure and comfort than to see people taking care of each other and advising based on their past experiences. We all are like a family here.

This site not only has given me lot of information but has also made be believe that my child is no different than any other child on this earth. It has given me hope, courage and strength to keep fighting and moving forward in life.

You had also mentioned about the multivitamins supplements and trace minerals. Could you please provide more information on this like what kind of vitamins and minerals should I give, dosage, what brand etc.

Best Wishes,
Himanshu

Dear Bostonian,

I could not agree more with you about our concerns as parents and I am extremely glad that you brought up this points and wrote to me. This is what this site is all about. Nothing gives me more pleasure and comfort than to see people taking care of each other and advising based on their past experiences. We all are like a family here.

This site not only has given me lot of information but has also made be believe that my child is no different than any other child on this earth. It has given me hope, courage and strength to keep fighting and moving forward in life.

You had also mentioned about the multivitamins supplements and trace minerals. Could you please provide more information on this like what kind of vitamins and minerals should I give, dosage, what brand etc.

Best Wishes,
Himanshu

Vitamins like B-Complex, mineral supplements like Calcium with magnesium, folic acid. That should be enough for a small child. But make sure not to give too much Vitamin C (usually no more than 250mg/day) as it frees the iron in blood stream (which is why I take my morning Asunra with orange juice as Vitamin C frees the iron in blood stream and Asunra/Exjade traps it and initiates the process to bind and possibly remove it).

-P.

Hi Prateek,

She is already taking folic acid.  We also give her Desirox mixed with 50 ml orange juice in the morning empty stomach. I did not understand your point on Vit C as to why excess of vitamin C is bad when it make iron chelation easier by freeing up the iron. Can you be more specific on the dosage and the brand of B-complex and calcium.

Regards,
Himanshu

Himanshu,

you are right. This forum feels like an extended family. Our own extended family cannot fully understand our worries and the things we go through but this forum does. And I still remember Andy's comforting words when we were lost and scared after learning about Thalassemia. This forum is more than family for us.

you asked about the multivitamin. Initially we were giving the vitamin gummies but during our last visit to Oakland children's we learnt that gummies really don't have all the things that a thal patient needs. the hemo suggested Centrum silver for our 6 yr old but we could not get our daughter to take that every night. I found the children's liquid multi-vitamin that was closely matched for vitamins and trace minerals to centrum silver. so this is the one we are giving to our child now. You can try this one as well but not sure if it is OK for a 2 yr old.
http://www.vitacost.com/childlife-multi-vitamin-and-mineral

In addition to this, we give vit D drops. we don't give any seperate gummy for Ca for now.

Himanshu,

you are right. This forum feels like an extended family. Our own extended family cannot fully understand our worries and the things we go through but this forum does. And I still remember Andy's comforting words when we were lost and scared after learning about Thalassemia. This forum is more than family for us.

you asked about the multivitamin. Initially we were giving the vitamin gummies but during our last visit to Oakland children's we learnt that gummies really don't have all the things that a thal patient needs. the hemo suggested Centrum silver for our 6 yr old but we could not get our daughter to take that every night. I found the children's liquid multi-vitamin that was closely matched for vitamins and trace minerals to centrum silver. so this is the one we are giving to our child now. You can try this one as well but not sure if it is OK for a 2 yr old.
http://www.vitacost.com/childlife-multi-vitamin-and-mineral

In addition to this, we give vit D drops. we don't give any seperate gummy for Ca for now.

Unfortunately,

Vitacost doesn't ship to India and many eastern counties, mostly Asian. I was just 2 days back looking to order from them my IP6, Green tea extract and one or two other things and I learnt to know it.

I tried Puritan.com as suggested by Andy in one of the posts but their checkout pages don't accept any of my 3 international shopping credit cards which I shop everytime. They've some great and cheap vitamins and minerals. Himanshu, you can try to look at that site. Or if it isn't available there, I've ordered my IP6 in past from http://seacoast.com, it's a good site as well.

-P.

Can you suggest some local brand which I can buy over the counter.

Hi Prateek,

She is already taking folic acid.  We also give her Desirox mixed with 50 ml orange juice in the morning empty stomach. I did not understand your point on Vit C as to why excess of vitamin C is bad when it make iron chelation easier by freeing up the iron. Can you be more specific on the dosage and the brand of B-complex and calcium.

Regards,
Himanshu

Vit C suggested dosage is 50 to 100 mg , higher dosage free up excess iron can cause clumping in heart when severely loaded.
In addition ,
Vit C helps and boost iron absorbtion from guts more particularly when hb is low.
and 50-100mg is sufficient

The maximum dose of vitamin C suggested for adult thals is 250 mg daily. For children, this is less.

Thank you Bostonian.

LL certainly visit our hemotologist and ask him to give a maintenance dose . And ll do the ALT and AST tests. Thank you for the suggestion.

Can you please tell what did you mean by Tx.

what i know from Transfusion reaction is that you will get rashes or your pee will be coco-cola color and will have high fever. if none of those symptoms were there, the hospital should be able to do some tests to rule out Tx related issue.

Hi Andy, 

Please let me know your view on my initial query.

Thank you Bostonian.

LL certainly visit our hemotologist and ask him to give a maintenance dose . And ll do the ALT and AST tests. Thank you for the suggestion.

Can you please tell what did you mean by Tx.

what i know from Transfusion reaction is that you will get rashes or your pee will be coco-cola color and will have high fever. if none of those symptoms were there, the hospital should be able to do some tests to rule out Tx related issue.

Hi Andy, 

Please let me know your view on my initial query.

Hi Binita,

Tx means "(Blood) Transfusion".

-P.

Hi Binita,

First, your daughter should be taking folic acid and a liquid multivitamin without iron. Is she nursing?

Yes, your son can be on a maintenance dose of Exjade, no more than 20 mg/kg.

Has the stomach problem happened more than once? Are his monthly monitoring tests for liver and kidney function in the normal range? The liver is often enlarged in thals due to ongoing hemolysis, but again are the liver tests normal? Does he take any supplements?

 Hi Andy ,

My daughter is nursing and how much folic acid should i give her.

I will start giving my son maintenance dose. thank you for your advice.

stomach pain has been continuous but he is ok from one week before that it went on for almost 2 mnths. I have not being doing any liver and kidney test. and he is taking only folic acid one tab per day.

Please let me know on what other test and supplements should I give.

Thank you.

Binita,

All patients using Exjade must undergo regular monitoring (monthly) for kidney and liver function. This cannot be omitted. The health and safety of the patient depends on it. Serum creatinine, ALT and AST should all be checked, as Exjade can cause serious and even life-threatening problems in some patients.

I would suggest 200-400 mcg of folic acid daily for the young one. 400 mcg for your son.