2 year old under weight and jaundice

Hi all,

I'm new to this forum... My 2 year old has thalassemia major... Our doctor said depending on his blood cell count, he'll either be major or intermidate... Well his blood cell counts only drops to dangerous level when he gets really sick... he's had about 3 transfusion already... this is after he gets sick and cannot recover on his own... he doesn't eat much and mainly craves junk food like chips and chocolate...

Our doctor wants him to have monthly transfusion and for us that's a big step and we're reluctant to... My wife suggest every 3 months but the doctor said it doesn't work like that... she wants him to have the transfusion so that he can put on weight... he's under weight for his age... We really don't know what to do... Not sure what's best for him... If we decide to do it monthly, can we change our minds later on if he improves and puts on significant weight? Or is it once you start monthly there is no turning back?

Forgot to mention his hb normally sits around 50 to 60...

I'm reading through the forum and see people recommend transfusion when it's on 70... Have we made a mistake? I mean doctors who have treated our son when his HB drops to 50 said transfusion is not required unless he drops further...

bino,

The Hb of the child is far too low. This will adversely affect the growth and the development of the child, including development of bones, which will begin to expand and cause changes to the skeletal structure, especially the skull and face, resulting in the defects thalassemia was long known for. The solution is regular transfusions. I know making that decision is not easy, but your child will do so much better and will have a chance to grow and develop, looking like other kids. The bones will be stronger and far less likely to fracture. Hb should be kept above 9.5-10. Once you see that growth is not normal, it is time to intercede with transfusions.

We are here to help advise you. There is a lot to learn about chelation and eventually iron chelation, which can now be accomplished with oral medications. Many countries have dedicated thal treatment centers. Where are you located?

Dear Bino,

As Andy has said, your child's hemoglobin is far too low for him to thrive and grow normally.  In recent years our goal has been to not allow our son's hemoglobin to drop below 10 so that he can enjoy and normal and active life.  This protects his bones, his heart, his spleen and his over all well being. 

When my son's hemoglobin is below 95 he loses his appetite as well.  He eats far more and better when his hemoglobin is above 100.  He also grows more when we maintain higher hemoglobin levels for him.  The body will not apply its energy to growth if it is struggling to survive due to low hemoglobin. 

Thanks a lot for the reply... I was thinking about this all weekend and so worried... I didn't realise being that low was bad for him... Even when it hit 50 the doctor said it's not that low that they would consider a transfusion so I assume 60 was ok... Well our next appointment with the specialist is next feb... So far away but that's the earliest...