Discussion Forums > Thalassemia Major

a 3 year old boy

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qys81:
My friend has a boy whose thals major, he is 3 years old now. We are all in China. Because the mother can not speak English, so she ask me to help her for some questions. I am so sorry my English is not good enough, but please spend some time for the little boy.

1. About medicine for iron.
In my country, normally there are three kind of medicine: desferal (injection) 0.5g;  film-coated tables deferiprone; Exjade.
The boy is using desferal injection two days a week.(he is getting blood every 3 weeks). The cheeper way is to use desferal or Exjade, because in my country if you buy 3 months Exjade, the goverment will pay the rest 9 month, although Exjade is more expensive. The boys mother wants to know if it is enough to use desferal 2 days a week, is it better if switch to Exjade.

2.The boy is eating less during days before his blood transition, is this normal, or is there any way to improve is.

3.In my country, there is not much people know about thals. Somebody think this is a terrible disease like cancer. A lot of kindgarden refuse kids like her son. So she does not tell the boy about his illness. every time the boy get blood , she tells the boy that is medicine. When did you guys tells your child the truths, how does the child react to this illness. How  should she take care of her boy emotionally?

Thank you all for your time and patients.

Canadian_Family:
I think your English is fine. This is great that you are helping your friend.
 
Now the answers to your questions are as follow:
 
1. Desferal as you are aware is given using the pump overnight. The long term side effects of desferal are well known and this is considered as safe drug. Desferal has been in use for the last 40 years or so. Exjade, on the other hand, is relatively new drug, it came out 4-5 years ago, short term side effects are known but long term side effects are not known. Most of the children on this forum are using exjade, as it is easy to use (dissolve tablet in water or orange juice and simply drink it), I do not believe there are any major issues with exjade so far. I cannot comment if using desferal two times a week is enough, it all depends on the ferritin level of the child. Also, the parent can decide if they want to switch to exjade. The important point is to have low ferritin level in the body and both drugs do the job well. Please talk to the doctor if they want to switch to exjade.
 
2. It is very common for children to be listless and eat less as the blood transfusion date approaches, It is normal. I do not believe there is much she can do to improve this situation. I would let the child rest and go with the flow.
 
3.This is a very common dilemma in most societies; it is unfortunate but a reality. My advice is to raise the boy just as you would raise a normal kid. One thing you have to understand and let the mother know that thalassemia may sound terrible, but in modern days, thalassemics are living healthier, successful and normal lives. They are getting married and have children of their own. Do not bother trying to explain a three year old, he would not understand. When the time comes he will understand. Just raise him like a normal kid. Just keep up with the blood transfusion, iron chelation and manage the situation.
 
Now, I also suggest you keep coming to this forum and ask any question and we will answer.
 
Please convey to the mother that help is available.

Madhavi:
Hello and Ni hao qys81!

I am in Guangzhou,China. Where are you?

You could get in touch with Dr.Chunfu Li at Nanfang Hospital here. There are many thalassemia patients here from Maoming, Shunde Sichuan,Xinjiang, etc.

Canadian_Family has answered your questions already....

Welcome to the forum and hope that all are able to help you solve your queries.

Regards,
Madhavi

aabha:
Ni Hao
my son just underwent a unrelated mismatched cord blood tranplant in april.His Hb today was 11.1
you too can approach Dr.Jaing at Chang Gung Memorial children's hospital,Linkou,Taiwan.
all the best.hope your friend's child is cured soon
love
aabha

qys81:
Thanks so much for you guys' replies.
The parents of that boys feels so lonely, because they did not tell their friends (except me) about this. I am SO glad I can help.

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