starting Exjade

Oh and one more thing that is maybe helping is that my son has become addicted to tea. Having been an anti tea addiction person all my life I feel sort of guilty about that when he cries for tea like he does for nothing else but I try to convince myself that it is good for him. He has tea once or twice a day but not with meals yet as he always wants to drink with his Baba.
Zahra

Zahra,

Why are you annoyed from this, actually you can increase his intake as much as you can. The only disadvange on tea is stopping iron absorption  during meals and that is exactly what we want for our children. You child is doing the right thing

Tea is an antioxidant especially green tea and it is highly recommended  in thalassemia

manal

Hi ,
5 months post exjade and ferritin 548.
Zahra

Congratulations Zahra 

manal

Thank you Manal
Zahra

Wow!! thats a great news  . Congrats .

Zaini.

Hi all,

This is my first posting and I am a new comer in this forum...FYI my daughter was diagnosed with HbE Beta-Thal in Feb 2010. She is now 6 yrs old. Initially she only need blood transfusion every 10-12 weeks or when her Hb below 7. However, the blood transfusion trend become more closer from 10 weeks to 8 weeks to 6 weeks and now in every 4 weeks which in every transfusion her Hb was lower than 6 or at least 7. The lowest Hb she ever had is 4.9. Since Feb 2010 until today she has had 13x of blood transfusion. And of course when she had received many times of transfusion her ferritin keep on increasing. Last month the Doc informed that her Ferritin level was about 1550 which need the chelation therapy to be started. The Doc gave us an option whether to take the Desferal (by injection) or Exjade (consume).. we decided to take the exjade since we feel so sorry to see our daughter suffering with everyday injection. So, today is the first day of my daughter taking exjade. Her weight is only 18 kg but the Doc prescribed her with 625 mg. My concern is it ok the dose with her weight? So far so good. I mixed the tablet with about 200 ml of an orange juice and she could finish it. I don't see any side effect yet since today is her first day taking exjade and she resumes her pre-school as usual. Please advise me any misunderstanding or missing information in taking care of thalessemic patient especially by taking the exjade.

Thanks in advance

Hi fatinsyakirah and welcome,

The standard dose for Exjade is 30 mg/kg, so her dosage by that formula would be 540 mg daily. 625 is not out of line. It is slightly higher, but this will be a positive, as it will help clean out the existing iron load and help to prevent additional iron loading from taking place. Also, as she grows, the higher dose will be necessary. Also, keep in mind that Novartis has now approved the use of Exjade with a variety of soft foods and juices, so if any problems arise, you can try other foods. It is recommended that the Hb is not allowed to drop below 9, and since she is now chelating, this low threshold should be observed so that proper growth and development takes place.

Hi Andy,

Thanks for the respond. The Doc did mentioned to us if the Hb level does not increase to at least 9 so they will start to transfuse every 3 or 2 weeks. I'm really worried what will happen if the transfusion become more frequent. One more thing I forgot to mention is, my daughter's spleen was first detected with about 2cm and now it enlarged to 8cm... this condition also make me so worry... is there anything we can do to prevent the spleen to keep on enlarging?

thanks in advance

The spleen enlarges when the HB levels is low. By keeping her HB levels around 10 - the spleen won't work extra hard, so it won't enlarge.

I understand with transfusion you are worried but think of it - Without transfusion, the other complications (like spleen enlargement) occur. Plus with better management of her blood count - you will have a healthy (and happy) daughter.

I also want to add that 8 cm is not unusual in a thal. And Narendra is exactly right. Higher Hb means less spleen enlargement, along with all the other positives that go along with a higher Hb level. I do suggest folic acid, natural vitamin E supplements and magnesium, to help red blood cells live longer.

Thanks to Narendra and Andy for the info and tips. As for now my daughter only takes folic acid and vit C (30mg-chewable). Her favorite food is only fried chicken or chicken rice and no vege at all. she drinks milk at least once a day. It's very hard for me since she always refuses to take any good  balance meals. She just loves chicken very much. What kind of foods can be consumed to help the red blood cells to live longer?  I think i must do something to make sure she is healthy and having a proper growth. I hope all of you can support us and I am sure that not only us facing this situation.

Best Regards

I would suggest adding a daily multivitamin without iron. These are available in chewable and liquid forms. Make sure there is no iron. Will she eat any types of fresh fruits?

fatinsyakirah,
I agree with Narendra...even though transfusion seems scary, but regular transfusion will maintain your daughter's Hgb close to 10 and she will feel goo and her appetitie will also return. My daughter is Bthal major and I see that when her Hgb is low she does not eat well. we use multivit gummies by wholefoods which do nto contain iron and is tasty too.

Hi all..

sorry for a late reply... Andy, she eats only selected fruits like oranges, grapes, banana and some local fruits... I think I would agree with you guys if I could provide her with multivitamins. I'll get one today... Thanks for sharing.

Mama Fatin