Exjade with 18 months?

Hello,

let me first introduce myself. I am mother of a 18 months old baby boy (Levin) who genetically should be Thalassemia intermedia, but his clinical situation is major with blood transfusions every 4 weeks. As we did not get a space in a thalassemia center in Dubai he is a patient of a hematologist.. but unfortunately she is not very experienced in Thalassemia.

Yesterday he got a blood tranfusions and before that his Ferritin level was 900... so she said it is time to start and gave him exjade to start the chelation therapy. As they did not have exjade 250, she gave him 500 and he shall take it every second day to get a effect of 250. Now I am very concerned:

0.) When is it really time to start chalation? is it too early?
1.) He is only 18 months, any idea on how safe it is to give a 18 months old baby exjade though it is released starting age of 2?
2.) Can I really give him (11,8 kg) 500 mg of exjade every two days or will this cause lots of side effects?
3.) (not really chelation related) but she does not give him folic acid supplements, as she saiys it is for intermedias only. But I read a lot abput also major patients taking it here in the forum. What is the folic acid for and shall I start giving it to him? Any brands recommended for babies?

Thanks a lot for sharing your experience & help!

Are you going to Al Wasl?

Typically, chelation begins after 10-20 transfusions and usually after the ferritin is over 1000. I personally think chelation is a bit premature in this case. Really, smaller doses must be available in Dubai. Perhaps you can wait until the 250 mg tabs are re-stocked. I see no urgency in beginning chelation so early when the ferritin is still below 1000. If you have to begin, can you cut the tab in half and take that amount daily?

Folic acid is needed for building red blood cells. If the child is intermedia, it does mean there is some ability to produce red blood cells anf folic acid is essential. I would suggest a liquid form and a dose of 200-400 mcg daily.

Hi Andy,

thanks a lot for your answer. OK, I think I will wait a few months to see how his ferritin will be at the next check. Hopefully it will not reach 1000 before he gets 2 as I am really not feeling well giving him Exjade though it explicit states that one can use it from 2 onwords.

He is at the american hospital, al wasl did not take him unfortunately as they don't have any space (or that's what they told us) :-(

He is or should be intermedia, correct, but still dependant on blood transfusions every 4 weeks. So they already call him major :-( Have you ever seen a case in which the distance between transfusions got longer by time?

Normally, the transfusion frequency will eventually become more often, not less frequent, unless the fetal hemoglobin drug, hydroxyurea is being used, which will raise the Hb of some patients.