Thalassemia

[NewGuy]

Hi all,

 

My girlfriend's one year old granddaughter has been admitted to a Phitsanulok hospital. She has been suspected of having Thalassemia, and has had regular blood tests and meds (I don't know which ones) since age 3 or 4 months. She has been sick almost every time I hear about her.

 

Tomorrow she will will have a procedure, putting a feeding tube in her throat, maybe other things.  I'm not in Thailand just now, have Skype-only communication, so my understanding of the situation is shakey. There is a large family contingent in the room and everybody seems positive (and noisy too).

 

I'm finding it difficult to google up information on Thalassemia (other than it is not uncommon in Thailand). Can anyone give me more information on the condition and why the throat thing may be necessary?

 

Thanks, and cheers.

[Sheryl]

There are different types of thalessemia but from what you say, she would have the "major" type. It causes a chronic anemia and can also lead to accumulation of iron in the blood. People with this are more susceptible to all types of infection, and also to heart failure

 

There is nothing about thalessemia per se that  would necessitate a feeding tube. That is done when people are for some reason unable to safely swallow food. There must be more to the story or some other condition present.

 

Are you sure it is a feeding tube and not an endoscopy (diagnostic procedure in which a tube is passed to the stomach to visualize it)? That would be done to diagnose things like cause of GI bleeding, which in turn can be a complication in just about any acute illness.

 

Between language barrier and the limited medical knowledge of even educated Thais in most cases, and the medical culture here in which doctors give little medical explanation to patients and their families, I doubt you are going to be able to get very far in knowing the details of what is happening, especially long distance.

 

[NewGuy]

Thanks Sheryl,

 

Boy, I know about communication difficulties and the Thai patient's understanding of her treatment.  I probably won't know 100% until I get back (if then) - about the tube.  

 

Can you direct to material which would help in understanding the condition and what role I can play in recovery and care?

 

Cheers

[Sheryl]

http://www.thalassemia.org/learn-about-thalassemia/about-thalassemia/ 

 

Her type is likely Beta Thalessemia Major. At the bottom of this site are a lto of links to pamphlets aimed at patients & caregivers

 

However, as I mentioned there is much more to this story if she is requiring a feeding tube, and thalessemia materials won't help you there. Do  you know if she is in a coma or semi-conscious? As that is the usual reason for needing tube feeding in a young-ish person. In which case prognosis may be poor. Coma can't  be explained by thalessemia per se.